It has been a very long time since I last wrote. I have been very busy working on the MSA compilation as well as dealing with a lot of grief and some good laughs.
Our old Akita, Bear, died in mid June. After 2 weeks we could no longer stand the emptiness without a dog so my husband checked Craigs List, hoping to find a Rhodesian Ridgeback that needed a good home. We were in luck, an ad had been re-posted that day about needing a good home for a Boxer cross Ridgeback. The owner had lost his job in construction and had to give up his 5 acre ranch with horses and cats, and a big, beautiful dog. He had moved into a 1 bedroom apartment and could not keep his beloved dog. We met him that night at a public park and fell in love with Boone. The next day, his owner brought him to our house and watched him play in the yard, meet the Chow next door, and enjoy the experience of running free. We have had him for 3 weeks now and do not know how we could get along without him. The cats were not too certain about him, still aren’t, for that matter, but he just ignores them and their cat food out on the floor. When the heat lessens, we will take him to dog park to play with other dogs. My husband walks him daily to get him out and about and even I have taken him for a walk. He is so big and strong that if I fall in his direction he catches me, and if I fall the other way his leash catches me. The extra exercise is helping me walk better and that is another big plus. Later this week we hope to take him to a dog beach where he can run free and play in the waves on the Gulf (central Florida).
The sadness, other than the loss of our Bear, is the upcoming death of our friend, Willie Waterhouse. He has been our boat captain and more in Utila for many years and is dying of cancer. There is nothing more the doctors can do and he is in pain. We suffer emotionally for him and with him. He is loved by many, especially by us as we go every year and I spend hours with him up in the flying bridge. We talked about everything from politics to education to the sea, mostly the sea and the ecology of nature and how all life is interconnected. We dread the phone call from Honduras, but we will know that he is freed from pain. We pray for him.
Monday, July 26, 2010
Monday, May 31, 2010
Serendipity
My husband bought a used bicycle a month or so ago and wanted me to get a trike to ride with him on a beautiful county park with 6 miles of pavement through the woods. I balked at the 400 dollar price tag, however, and every time one appeared on Craigs List it was old in minutes.
Yesterday a truck was idling outside our house and my husband went outside to see what was going on. In the back of the truck was a trike and my husband asked if it was for sale and for how much. He agreed on a price and ran in for me to try it out. I admit after only 3 minutes my legs felt like lead but I have hopes of building up some extra strength by persevering. We ran in the house, well, I hobbled, and were able to pool our cash to buy it. When we came out the man said 2 other people had tried to buy it from him while we were inside but they were kids and wanted to put a boom box in the back and he hates the music the kids play on those so he told them it was already sold, which was the truth.
Now, some evening or early morning, we will go out and ride. If the little slopes are too steep at first I will go as far as I can, turn around and coast down, then go back up. Since this is Florida and in the summer, it has to be either very early or very late. I doubt if my ride lasts more than five to ten minutes at first but I hope to build it up from there.
I am still practicing a bit of yoga each night, especially rolling my shoulders and doing both should and leg stretches and flexibility asanas.
I keep expanding my horizons and keeping my mind focused on strength and health.
Yesterday a truck was idling outside our house and my husband went outside to see what was going on. In the back of the truck was a trike and my husband asked if it was for sale and for how much. He agreed on a price and ran in for me to try it out. I admit after only 3 minutes my legs felt like lead but I have hopes of building up some extra strength by persevering. We ran in the house, well, I hobbled, and were able to pool our cash to buy it. When we came out the man said 2 other people had tried to buy it from him while we were inside but they were kids and wanted to put a boom box in the back and he hates the music the kids play on those so he told them it was already sold, which was the truth.
Now, some evening or early morning, we will go out and ride. If the little slopes are too steep at first I will go as far as I can, turn around and coast down, then go back up. Since this is Florida and in the summer, it has to be either very early or very late. I doubt if my ride lasts more than five to ten minutes at first but I hope to build it up from there.
I am still practicing a bit of yoga each night, especially rolling my shoulders and doing both should and leg stretches and flexibility asanas.
I keep expanding my horizons and keeping my mind focused on strength and health.
MSA Support Group
Last week there was a question if there was a support group in Tampa. I replied that there wasn’t and then proceeded to create one. In only that week I have set a date, June 26, at three PM at the Temple Terrace Public Library. Now, I have never even been to a support group of any kind and here I am organizing and leading one. I have a flier completed and ready to post at Neurology offices around Tampa and I have notified three other support groups to post our meeting. There will probably be only a few attendees at first, but I hope it will grow. I also will work on finding a better locale for the meetings. I would like to go to a large nursing/assisted living facility or to the College of Medicine Neurology Department at USF.
One of the goals of the group is to expose the residents in the neurology dept. what MSA, PSP, CDB, OPCA, etc. look like and how they impact not just the patient but the families. Perhaps they will pay better attention when someone comes into the clinic with a variety of vague symptoms and think about one of these disorders and save the patient and family a lot of time and money by having to go back and forth from specialist to specialist.
Of course, the main goal, is a place for us to talk and support one another and to learn from each other. It will be a lot of work but I think it will be worth it. As my therapist said, “It’s not as if you do not already have enough to do”. Again, stay active, use my mind, and help others in any way I can.
One of the goals of the group is to expose the residents in the neurology dept. what MSA, PSP, CDB, OPCA, etc. look like and how they impact not just the patient but the families. Perhaps they will pay better attention when someone comes into the clinic with a variety of vague symptoms and think about one of these disorders and save the patient and family a lot of time and money by having to go back and forth from specialist to specialist.
Of course, the main goal, is a place for us to talk and support one another and to learn from each other. It will be a lot of work but I think it will be worth it. As my therapist said, “It’s not as if you do not already have enough to do”. Again, stay active, use my mind, and help others in any way I can.
Wednesday, May 26, 2010
MSA Exercise Video
I received an MSA Exercise video from Gene Rechsteiner this week. He has a physical therapist, Kathy Pistoreal who has designed an exercise program to help his balance and range of motion. From what his wife has said, it has really helped him and Kathy anticipates possible problems and heads them off before they get in the way of his program.
If anyone would like a copy of the DVD Cindy, his wife, will send you one free with the caveat that you make a donation to the MSA Shy-Drager Support Group. I am going to take a copy to my rolfer as well as to my yoga instructor for them to get some additional tips in helping me.
Life is wonderful how it provides us with the information we need before we even know we need it. The universe is unfolding as it should and all is well.
If anyone would like a copy of the DVD Cindy, his wife, will send you one free with the caveat that you make a donation to the MSA Shy-Drager Support Group. I am going to take a copy to my rolfer as well as to my yoga instructor for them to get some additional tips in helping me.
Life is wonderful how it provides us with the information we need before we even know we need it. The universe is unfolding as it should and all is well.
Yoga for Physical Therapy
I started practicing yoga again last week. My first yoga instructor specializes in gentle, therapeutic yoga and is developing a regimen for my specific needs.
The first class consisted of discussing my limitations and abilities. We spent about 30 minutes talking as she took notes. After that, she got out the mats and we started.
We worked on the legs and hips to start with by limbering them up with toe stretches and lifts. After 20 minutes or so we did about 10 minutes with my hands.
That was enough and I told her I had to quit. I should have stopped earlier but I have always been a type A and push myself beyond the limits so I was weak and dizzy. She finished up the exercise with a 10 minutes healing meditation that helped me to once again ground myself.
We discussed future goals and how I need to back off pushing myself to the point of pain and damage and will have shorter sessions from now on. I am not certain if I am going to go weekly or every other week. I think that this combined with my rolfing will add more range of movement and better balance for me.
The first class consisted of discussing my limitations and abilities. We spent about 30 minutes talking as she took notes. After that, she got out the mats and we started.
We worked on the legs and hips to start with by limbering them up with toe stretches and lifts. After 20 minutes or so we did about 10 minutes with my hands.
That was enough and I told her I had to quit. I should have stopped earlier but I have always been a type A and push myself beyond the limits so I was weak and dizzy. She finished up the exercise with a 10 minutes healing meditation that helped me to once again ground myself.
We discussed future goals and how I need to back off pushing myself to the point of pain and damage and will have shorter sessions from now on. I am not certain if I am going to go weekly or every other week. I think that this combined with my rolfing will add more range of movement and better balance for me.
A Tale of Two Tails
I mentioned that on January 27 of this year we rescued a very large neutered male cat whose playmate had been a pit bull. To top it all off, he was declawed and so used his teeth to express his displeasure or playfulness.
Our vet had a brother and sister pair who looked very much like our original cat, Tiki, as well as like Ki. They were feral, one and a half years old, and had not been handled. No one had been willing to give them a chance of life outside a cage and we felt that was just not acceptable so we brought them both home to foster.
The first two days were a trial of try to find a cat as they hid and we pounced to catch them. We finally brought in a large-breed wire dog cage and kept them in the living room where they could get used to us walking around, the TV, dinner, etc.
After three days we opened the cage door and let them choose when to go in and come out. For a few days they still slept on the loft – a board my husband had installed for them to have a higher elevation and provide more space on the floor.
We named them Jazz and Jillie as their names at the vet were Jack and Jillie. Now we have a jazz combo. Ki is the keyboard man, Jazz is the sax man, and Jillie is the diva vocalist.
Watching them come to accept us has been a great distraction from focusing on MSA and my limitations. The other night Jazz climbed onto my husband’s lap, flopped over on his back, and begged to be petted. Last night even shy Jillie jumped on the couch where my husband was sitting and fell asleep.
We still cannot approach them when we are standing up or try to pick them up, but they accept our presence around the house. They are a blessing in disguise. My therapist said that sometimes you don’t get the cat you want, but the cat you need and I think all three of our rescues are that. We are learning so much about ourselves as we learn how to interact with them.
Our vet had a brother and sister pair who looked very much like our original cat, Tiki, as well as like Ki. They were feral, one and a half years old, and had not been handled. No one had been willing to give them a chance of life outside a cage and we felt that was just not acceptable so we brought them both home to foster.
The first two days were a trial of try to find a cat as they hid and we pounced to catch them. We finally brought in a large-breed wire dog cage and kept them in the living room where they could get used to us walking around, the TV, dinner, etc.
After three days we opened the cage door and let them choose when to go in and come out. For a few days they still slept on the loft – a board my husband had installed for them to have a higher elevation and provide more space on the floor.
We named them Jazz and Jillie as their names at the vet were Jack and Jillie. Now we have a jazz combo. Ki is the keyboard man, Jazz is the sax man, and Jillie is the diva vocalist.
Watching them come to accept us has been a great distraction from focusing on MSA and my limitations. The other night Jazz climbed onto my husband’s lap, flopped over on his back, and begged to be petted. Last night even shy Jillie jumped on the couch where my husband was sitting and fell asleep.
We still cannot approach them when we are standing up or try to pick them up, but they accept our presence around the house. They are a blessing in disguise. My therapist said that sometimes you don’t get the cat you want, but the cat you need and I think all three of our rescues are that. We are learning so much about ourselves as we learn how to interact with them.
Wednesday, May 19, 2010
Acceptance
This is an important thing for those of with MSA and our caregivers have to keep reminding ourselves about. Acceptance is just realizing that this is what we have and what we can do and this is what we cannot and then do what we can do with as much joy and pleasure that we can muster.
Granted, we may not be able to change our physical ability, but we can change how we view it. Change the frame around it, as my therapist says. Focus on what can be changed and let go of that which cannot be changed. Emotionally, we do have choices and it is up to us to choose how we look at our disease. How much it limits us or how much it frees us from conventional behavior. Like, I don’t want to go out to dinner with these people, I do not know them well and I am tired, so, choose to say no. If you do not want to be in the presence of someone who is negative or makes you feel uncomfortable, just say no when you might be forced into close contact with that person. I find it very liberating to finally be able to say no without feeling guilty. Time is too short to feel guilty; as is life.
I was treated today to a wonderful experience. A very dear friend of mine is an interior designer and decorator who has a client in Dade City, Florida. This friend raises horses and there were two new three week old colts and I was invited to come up and play with them. No, I cannot ride again, but one of the top things on my bucket list was to hug a horse as I used to have my own horses growing up and in my twenties. Well, I hugged more than one. I rubbed velvety soft noses, felt the smoothness of a foal’s skin, the delightful feel of a mane slipping between my fingers; I was in a state of bliss. I laughed hysterically as my friend drove a gator John Deere all purpose farm vehicle. I had a wet black lab held securely between my legs as we drove along. We had gone to a pond where a Florida Sandhill Crane was nesting and Prissy decided she would like a swim so, of course, she did and since she had arthritis, she needed to ride back in the shotgun seat with me.
It was a completely perfect day forged by friendship with my special friend and now a new friend who is gracious and charming and loves horses as much as I do. I cannot thank my friend enough for taking time out of her busy schedule to provide me with four hours of her time. Not only was she having to go almost straight to a client’s house as soon as we got home, she is also hosting a ninetieth birthday for her husband’s mother this weekend with an expected attendance of 50.
So, bless busy friends who take time to bring pleasure to another person’s world. Life sure is wonderful, isn’t it.
Acceptance Isn’t Surrender
By PAVEL G. SOMOV, PH.D.
Acceptance isn’t passivity or surrender, but an active engagement in reality, in real time, on its terms. As such, acceptance is realism, a seeing of reality as is, which, of course, requires existential courage rather than an escapist, idealistic flight into what should be.
Accepting the reality as it is now means just that: accepting the reality as it is now! If you don’t like the way reality is right now, change the future – but you first have to accept the present.
You might think: “If I am to accept that at any given time I am doing the best that I can, then how am I to achieve my goals? How am I to improve myself?” The false choice here is this: either accept or change. Acceptance of the fact that at any given time you are doing your practical (not theoretical) best doesn’t mean that you cannot try to improve the next moment. Of course, you can.
Accept and change: accept that at any given moment you are doing the best you can do and, having learned from the experience of this given moment, try to change and improve the next moment to the extent that you can. Automatic, reflexive, on-the-fly perfectionistic rejection of reality as not being good enough triggers a mindless rush to improve it.
Acceptance, that begins with the acknowledgment of what is as being the best that it can be at the given moment, is the beginning of mindful change.
Granted, we may not be able to change our physical ability, but we can change how we view it. Change the frame around it, as my therapist says. Focus on what can be changed and let go of that which cannot be changed. Emotionally, we do have choices and it is up to us to choose how we look at our disease. How much it limits us or how much it frees us from conventional behavior. Like, I don’t want to go out to dinner with these people, I do not know them well and I am tired, so, choose to say no. If you do not want to be in the presence of someone who is negative or makes you feel uncomfortable, just say no when you might be forced into close contact with that person. I find it very liberating to finally be able to say no without feeling guilty. Time is too short to feel guilty; as is life.
I was treated today to a wonderful experience. A very dear friend of mine is an interior designer and decorator who has a client in Dade City, Florida. This friend raises horses and there were two new three week old colts and I was invited to come up and play with them. No, I cannot ride again, but one of the top things on my bucket list was to hug a horse as I used to have my own horses growing up and in my twenties. Well, I hugged more than one. I rubbed velvety soft noses, felt the smoothness of a foal’s skin, the delightful feel of a mane slipping between my fingers; I was in a state of bliss. I laughed hysterically as my friend drove a gator John Deere all purpose farm vehicle. I had a wet black lab held securely between my legs as we drove along. We had gone to a pond where a Florida Sandhill Crane was nesting and Prissy decided she would like a swim so, of course, she did and since she had arthritis, she needed to ride back in the shotgun seat with me.
It was a completely perfect day forged by friendship with my special friend and now a new friend who is gracious and charming and loves horses as much as I do. I cannot thank my friend enough for taking time out of her busy schedule to provide me with four hours of her time. Not only was she having to go almost straight to a client’s house as soon as we got home, she is also hosting a ninetieth birthday for her husband’s mother this weekend with an expected attendance of 50.
So, bless busy friends who take time to bring pleasure to another person’s world. Life sure is wonderful, isn’t it.
Acceptance Isn’t Surrender
By PAVEL G. SOMOV, PH.D.
Acceptance isn’t passivity or surrender, but an active engagement in reality, in real time, on its terms. As such, acceptance is realism, a seeing of reality as is, which, of course, requires existential courage rather than an escapist, idealistic flight into what should be.
Accepting the reality as it is now means just that: accepting the reality as it is now! If you don’t like the way reality is right now, change the future – but you first have to accept the present.
You might think: “If I am to accept that at any given time I am doing the best that I can, then how am I to achieve my goals? How am I to improve myself?” The false choice here is this: either accept or change. Acceptance of the fact that at any given time you are doing your practical (not theoretical) best doesn’t mean that you cannot try to improve the next moment. Of course, you can.
Accept and change: accept that at any given moment you are doing the best you can do and, having learned from the experience of this given moment, try to change and improve the next moment to the extent that you can. Automatic, reflexive, on-the-fly perfectionistic rejection of reality as not being good enough triggers a mindless rush to improve it.
Acceptance, that begins with the acknowledgment of what is as being the best that it can be at the given moment, is the beginning of mindful change.
Saturday, May 8, 2010
Overdoing it
Yesterday, I was feeling really good and walking better than I have in months so I decided to go to the grocery and load up. I took in 4 reusable bags and hopped on the motorized scooter cart. I bought 8 cans of dogfood, milk, 2 big bags of apples, and 5 boxes of cookies and crackers for my husband, and a variety of other stuff. I also stopped and purchased 2 cases of water with 24 bottles in each case. I had to carry these out of the store where I purchased them. When I got home he was busy building a mesh shelter for our dog so I decided to carry everything in by myself. BIG MISTAKE.
Last night I had muscle cramps from top to toe and had to take a muscle relaxant in order to sleep. When I woke up this morning my gait was once again compromised. I was dizzy and my legs felt leaden and did not want to pick up my feet.
I should know by now that I need to ask for help. After all, it is listed in my Things MSA has taught me blog.
I know from past experience that I should not push my body like that. Moderate exercise and carrying objects are good for me, but heavy lifting and walking while carrying heavy objects sets me back and makes me look at myself somewhat critically. I need to be careful with this body; it is the only one I have right now and I am not yet ready to trade it in for a new model.
So, advice to others with MSA type diseases, do not overdo it. Respect your limits and listen to what your body tells you. Ignore the little bird in the mind that says that, of course you can do this now because you used to be able to. This is advice aimed at me. I just need to follow my own advice.
Last night I had muscle cramps from top to toe and had to take a muscle relaxant in order to sleep. When I woke up this morning my gait was once again compromised. I was dizzy and my legs felt leaden and did not want to pick up my feet.
I should know by now that I need to ask for help. After all, it is listed in my Things MSA has taught me blog.
I know from past experience that I should not push my body like that. Moderate exercise and carrying objects are good for me, but heavy lifting and walking while carrying heavy objects sets me back and makes me look at myself somewhat critically. I need to be careful with this body; it is the only one I have right now and I am not yet ready to trade it in for a new model.
So, advice to others with MSA type diseases, do not overdo it. Respect your limits and listen to what your body tells you. Ignore the little bird in the mind that says that, of course you can do this now because you used to be able to. This is advice aimed at me. I just need to follow my own advice.
Friday, May 7, 2010
MSA in person support group in Tampa Bay area
Well, here I am. I have never attended any type of support group or therapy group and here I am volunteering to establish one in the Greater Tampa Bay Area.
Someone on the Shy-Drager.org online support group asked if there was one somewhere near Tampa and I responded that there wasn’t one and asked the question if there were others nearby who would be interested in such a group. So far there are 5 of us interested.
I asked my therapist today what does one do in such a group? How should I proceed? He suggested that a guest speaker like my neurologist could be invited to speak and answer questions – something that all of us have are lots of questions. I also suggested my friend, the former Chair of the Department of Neurology at the USF College of Medicine.
I think my first step will be to figure out a day of the week and a time of day that works out best for everyone. Then I will find a location that is easy to find and reach for almost everyone. Most folks will have to travel in order to have the location somewhat centralized since most live in all directions outside of Tampa and Hillsborough County. Possibly the University will allow us to use a room in the neurology department and even, perhaps, residents in neurology can attend for part of the time to learn first-hand what MSA is and what it looks like in all it’s myriad forms.
I have formed a group in my email for this support group and the moderator of the Shy-Drager group will post our meeting dates on the calendar as well as reminders so everyone will know there is now a group in Tampa.
I am cautiously optimistic about the group. I just hope that people follow through and come to the meetings, especially if I am able to have them at the College of Medicine.
Someone on the Shy-Drager.org online support group asked if there was one somewhere near Tampa and I responded that there wasn’t one and asked the question if there were others nearby who would be interested in such a group. So far there are 5 of us interested.
I asked my therapist today what does one do in such a group? How should I proceed? He suggested that a guest speaker like my neurologist could be invited to speak and answer questions – something that all of us have are lots of questions. I also suggested my friend, the former Chair of the Department of Neurology at the USF College of Medicine.
I think my first step will be to figure out a day of the week and a time of day that works out best for everyone. Then I will find a location that is easy to find and reach for almost everyone. Most folks will have to travel in order to have the location somewhat centralized since most live in all directions outside of Tampa and Hillsborough County. Possibly the University will allow us to use a room in the neurology department and even, perhaps, residents in neurology can attend for part of the time to learn first-hand what MSA is and what it looks like in all it’s myriad forms.
I have formed a group in my email for this support group and the moderator of the Shy-Drager group will post our meeting dates on the calendar as well as reminders so everyone will know there is now a group in Tampa.
I am cautiously optimistic about the group. I just hope that people follow through and come to the meetings, especially if I am able to have them at the College of Medicine.
Tuxedo Cat
About 9 months ago, a small, sleek, young adult Hemingway tuxedo cat came calling on us as we walked in the front yard. He was very friendly and loving, loved getting his tummy rubbed, and had 6 toes on all 4 paws. Since he was well fed and so sleek and healthy, we assumed he belonged to a neighbor. A few months went by with no sign of him and I finally saw him crossing the street in front of a house where the owner had 3 or 4 cats so I assumed he was one of hers. We did not see him in our yard again until 3 weeks ago.
We debated some about adopting him; taking him in and getting him neutered and all his shots and bring him inside with our newly acquired neutered male whom we also rescued. When he had first appeared and we figured he belonged to someone, we talked about him some in case he did not but at that time our elderly female cat was ill and the trauma of introducing a new cat into her house was not conceivable.
She replied to my email with one of the most moving emails I have ever received. She provided me with comfort and understanding that further cemented our friendship.
We know when we send our love out to mangy, ragged ,or abandoned and lonely, or little or big, and of all assorted colors and meow tones, that we risk losing our hearts, each and every time. And being ill, Paws had your care & attention for however long it took to make his life better. I've found myself in that situation many times....sometimes I'm really selfish and keep them around me longer, so I have more time to love them up, and other times, before the attachment really has a chance to turn into cement, I know it's time to let go. So, you knew it was time to let go. How lucky that he was loved & has someone to remember him. We should all be so lucky.
Peace,
S
| Sara, Thank you for your comforting and loving words. I knew he would be better off not suffering, even though it meant I would no longer hear his ragged cry and scratch his little white belly. Sometimes you just feel a connection with an animal - like maybe he was a reincarnation or was sent by a former beloved companion. Anyway, I loved him and he was fed and loved every day for the last 2 weeks of his life. As I took him in the crate to the vet, I put my finger in the cage door and he rubbed against it with his snaggly face. I was good to love him and I am a better person for it. Your words made me realize that. Thank you. Mary |
Added later in an edited posting
I have a huge admission of lack of something in my heart. I apologized to Ki for not being able to love him as I had loved Paws. I am ashamed of this feeling, despite my MSA teachings were to allow myself to feel what I feel is OK. But, somehow, this does not feel OK.
Monday, May 3, 2010
What MSA has taught me
I am afraid my last couple of posts were unusual for me. The fatigue from the trip wore me out to the point that I was not thinking clearly and not appreciating all that I have learned from MSA.
Things I have learned:
To appreciate the beauty of small things, from a smile to a flower to an insect or a slug.
That even when I am in the darkest places of my soul, a light still shines, even if dimly, until I am ready to open myself to the fullness of light again.
My humanity, my compassion for all living beings, to realize that everyone has a cross to bear and mine is no worse than anyone else’s.
That sleep is a necessity for me to live fully. My body recovers as it sleeps so that, even though it has taken a week, I am finally not as dizzy as I was last week.
Although my progression through MSA is a slower one than some others, I still experience the loss of function and can appreciate what I still have left.
That a connection with people is vital to my soul. I cannot live as a hermit, all alone, cooped in my house. I need friendships and I need to be a friend to others and meet their needs, even if not convenient for me at that time.
That getting angry at the disease is OK. That anger is not a bad thing so long as I express it appropriately and do not harm others with it.
That I do not have to get a mammogram or any other medical procedure if I do not want to.
That I must walk with my head looking straight and slightly down to see where my feet are stepping. If I want to look up, I must stop and place myself. If I want to look to the side, I must stop and turn my body and not just my head. That if there is something, like a truck mirror, is above the level of my eyes, I am going to smack it with my head, and that is OK for I need to look at my feet first.
That I need to provide more love and understanding to everyone I come in contact with, whether I like them or not.
That I do not have to spend time with those who are negative or who express negative emotions of racism or religious intolerance. Yes, I have to provide love and understanding, but I do not have to remain in their presence.
That it is OK to say no.
That it is OK to admit I cannot do something and ask for assistance.
That even a bad dive underwater is better than no dive at all.
That peace and happiness come from within me and not from someone else.
That life, no matter the hardships, is worth living and fighting for.
Things I have learned:
To appreciate the beauty of small things, from a smile to a flower to an insect or a slug.
That even when I am in the darkest places of my soul, a light still shines, even if dimly, until I am ready to open myself to the fullness of light again.
My humanity, my compassion for all living beings, to realize that everyone has a cross to bear and mine is no worse than anyone else’s.
That sleep is a necessity for me to live fully. My body recovers as it sleeps so that, even though it has taken a week, I am finally not as dizzy as I was last week.
Although my progression through MSA is a slower one than some others, I still experience the loss of function and can appreciate what I still have left.
That a connection with people is vital to my soul. I cannot live as a hermit, all alone, cooped in my house. I need friendships and I need to be a friend to others and meet their needs, even if not convenient for me at that time.
That getting angry at the disease is OK. That anger is not a bad thing so long as I express it appropriately and do not harm others with it.
That I do not have to get a mammogram or any other medical procedure if I do not want to.
That I must walk with my head looking straight and slightly down to see where my feet are stepping. If I want to look up, I must stop and place myself. If I want to look to the side, I must stop and turn my body and not just my head. That if there is something, like a truck mirror, is above the level of my eyes, I am going to smack it with my head, and that is OK for I need to look at my feet first.
That I need to provide more love and understanding to everyone I come in contact with, whether I like them or not.
That I do not have to spend time with those who are negative or who express negative emotions of racism or religious intolerance. Yes, I have to provide love and understanding, but I do not have to remain in their presence.
That it is OK to say no.
That it is OK to admit I cannot do something and ask for assistance.
That even a bad dive underwater is better than no dive at all.
That peace and happiness come from within me and not from someone else.
That life, no matter the hardships, is worth living and fighting for.
Wednesday, April 28, 2010
I Hate this Frigging Disease
I have entered a state of mind where I have come to hate in all capital letters this frigging disease. I hate seeing how my body slowly deteriorates. I hate looking back at what I used to be able to do and now cannot.
This is a different feeling for me. I had been so tranquil and accepting of the disease. And, in a way, I still am at peace with the knowledge that I am going to live a shorter lifespan than most folks, but I am not at peace with the experience of dying piecemeal. This slow dying process is frustrating and depressing.
Yes, I am overjoyed I can still drive and walk short distances without too much pain or danger of falling. I can still dive with a lot more assistance from other people helping me. It took two men to get me to step on and off the boat. And, despite the type of diving that was chosen by others, I still was measurably more comfortable in the water and was able to really experience the freedom of movement underwater.
Flying was horrible, or, at least, the airport waits were horrible. We live only 2 hours from Utila by plane if we could fly straight from Tampa, but it took us 17 hours to get home. We got up at 4 AM in Utila and arrived home at midnight, exhausted and spent.
I look back at what I could do last year, or even a few months ago, and am struck at what has been lost. Still, I am so very blessed that my disease is progressing slowly. It gives me and my husband time to prepare for what is to come. When I think of those who go from walking to bedridden in only a few months, I know I am so very, very lucky. Not only that, I feel fortunate that I have this disease instead of other, much worse scenarios. Life is much worse for the majority of the world’s population that I feel guilty in even complaining about my own condition, but I am only human.
I hope I have not disappointed any of my followers with my mood of the month, but I feel I must be honest in my humanity. I really do hate this frigging disease.
This is a different feeling for me. I had been so tranquil and accepting of the disease. And, in a way, I still am at peace with the knowledge that I am going to live a shorter lifespan than most folks, but I am not at peace with the experience of dying piecemeal. This slow dying process is frustrating and depressing.
Yes, I am overjoyed I can still drive and walk short distances without too much pain or danger of falling. I can still dive with a lot more assistance from other people helping me. It took two men to get me to step on and off the boat. And, despite the type of diving that was chosen by others, I still was measurably more comfortable in the water and was able to really experience the freedom of movement underwater.
Flying was horrible, or, at least, the airport waits were horrible. We live only 2 hours from Utila by plane if we could fly straight from Tampa, but it took us 17 hours to get home. We got up at 4 AM in Utila and arrived home at midnight, exhausted and spent.
I look back at what I could do last year, or even a few months ago, and am struck at what has been lost. Still, I am so very blessed that my disease is progressing slowly. It gives me and my husband time to prepare for what is to come. When I think of those who go from walking to bedridden in only a few months, I know I am so very, very lucky. Not only that, I feel fortunate that I have this disease instead of other, much worse scenarios. Life is much worse for the majority of the world’s population that I feel guilty in even complaining about my own condition, but I am only human.
I hope I have not disappointed any of my followers with my mood of the month, but I feel I must be honest in my humanity. I really do hate this frigging disease.
Back from Utila
We went to Utila again last week. The flight over was brutal and left me drained, confused, and I had trouble with balance and speech. It was what we thought was an endurance trial of 14 hours of airports and planes, despite upgrading to Business Class.
On Sunday, our first true day at Utila Lodge, I prepared to go diving and realized at once that I was not the person I had been last year. I was unable to accomplish climbing the ladder without great pain and loss of breath followed by generalized muscle weakness. I completed the first dive but was so fatigued that I slept through the second one. On that first dive, however, I saw the tiniest lobster I have ever seen; a baby of about half an inch long. I found it quite by accident when I stuck my fingers in front of a small hole in a coral mound so I could have cleaner shrimp climb on my hand to clean me. Instead, I felt a wee bite on my little finger and looked in more closely to see the baby lobster try to taste me for lunch. A wonderful experience.
I am what I call a sand diver. I like to find a nice sand hole in among the coral heads and search for tiny critters to watch and intently study their behavior. Unfortunately, the other 10 divers on the boat liked a different type of diving so I had only a few that allowed me to rest quietly in the sand. As a result, my two alternating dive-buddy divemasters had to do some towing in order for me to follow the group across the coral reefs. My husband took over the duty of keeping me safe and towing me on the last dive day on Thursday. I did see a very large spotted eagle ray swim by in the deep, a young hawksbill turtle, and an enormous green moray eel so the reef dives were certainly not without excitement.
Because of this type of diving, I saw very few little creatures and was unable to fully experience my dives. Being underwater again, however, was wonderful as always. To float effortlessly with no gravity pulling me down, no pain from aching joints, is rejuvenating for me. I guess my buddies did not find it so effortless, but being underwater still beats standing on dry land any day of the week.
On Sunday, our first true day at Utila Lodge, I prepared to go diving and realized at once that I was not the person I had been last year. I was unable to accomplish climbing the ladder without great pain and loss of breath followed by generalized muscle weakness. I completed the first dive but was so fatigued that I slept through the second one. On that first dive, however, I saw the tiniest lobster I have ever seen; a baby of about half an inch long. I found it quite by accident when I stuck my fingers in front of a small hole in a coral mound so I could have cleaner shrimp climb on my hand to clean me. Instead, I felt a wee bite on my little finger and looked in more closely to see the baby lobster try to taste me for lunch. A wonderful experience.
I am what I call a sand diver. I like to find a nice sand hole in among the coral heads and search for tiny critters to watch and intently study their behavior. Unfortunately, the other 10 divers on the boat liked a different type of diving so I had only a few that allowed me to rest quietly in the sand. As a result, my two alternating dive-buddy divemasters had to do some towing in order for me to follow the group across the coral reefs. My husband took over the duty of keeping me safe and towing me on the last dive day on Thursday. I did see a very large spotted eagle ray swim by in the deep, a young hawksbill turtle, and an enormous green moray eel so the reef dives were certainly not without excitement.
Because of this type of diving, I saw very few little creatures and was unable to fully experience my dives. Being underwater again, however, was wonderful as always. To float effortlessly with no gravity pulling me down, no pain from aching joints, is rejuvenating for me. I guess my buddies did not find it so effortless, but being underwater still beats standing on dry land any day of the week.
Saturday, April 10, 2010
COPING WITH LOSS
Here are some suggested ways for coping with the everyday feelings and realities that occur during the time of loss, grief and bereavement.
• Be gentle with your own feeling process. Avoid self-judgment. Do not say “I should have”.
• Find a supportive person or persons you can trust. Share your honest feelings. Give yourself time for healing. The timing of grief cannot be rushed. Plan your time so that you have specific time to focus on your loss and special time to escape from the pain of the reality of what you are facing.
• When you experience fear, anger, helplessness, sorrow, pain, emptiness, isolation, depression, and relief - it can be very confusing. Questions to ask yourself which help you to focus are: How do I feel right now? (Check body sensations, thoughts and emotions); What do I need right now? (Focus on immediate, attainable needs) How can I meet (or get a supportive friend to help me meet) these needs right now?
• Try to maintain as regular a schedule as possible. Avoid unrealistic expectations/goals for yourself.
• Maintain an awareness of your body’s need for nutrition and rest. If symptoms arise that are new or unusual, see your physician.
• Listening to your body is critical during this period of time. Listening is different than doing something for your body. Listening means to honor the messages your body is sending you. Words or tears that are unexpressed can cause a lump in our throats. Anger that is held inside can give us an upset stomach, headache, or tight neck and shoulders. Wringing hands, shakiness or queasy stomach can express fear. Guilt or resentment can feel like physical burdens we are carrying (I feel like I weigh a ton). Sorrow or depression can feel like pressure or breaking in our heart or chest area. Breathing may be labored or we may breath great sighs. Often a combination of these feelings is felt. It can be helpful to ask the part of the body that feels these sensations the following questions: If you could talk, what would you say? What picture or symbol best expresses you right now? What do you look like? What is happening right now?
• Writing a letter or drawing a picture of your loss or grief can be a healing way to get your feelings from the inside to the outside. Writing to others whom you feel incomplete with, or writing a letter to yourself, or to an institution, physician, hospital, or even to God, enables you to process what your body longs to say. It also enables you to release anger, frustration, and isolation and move to a forgiving, life-affirming love for yourself and those who have touched your life.
From The Life Center of the Suncoast, Inc. www.lifecentertampa.org
• Be gentle with your own feeling process. Avoid self-judgment. Do not say “I should have”.
• Find a supportive person or persons you can trust. Share your honest feelings. Give yourself time for healing. The timing of grief cannot be rushed. Plan your time so that you have specific time to focus on your loss and special time to escape from the pain of the reality of what you are facing.
• When you experience fear, anger, helplessness, sorrow, pain, emptiness, isolation, depression, and relief - it can be very confusing. Questions to ask yourself which help you to focus are: How do I feel right now? (Check body sensations, thoughts and emotions); What do I need right now? (Focus on immediate, attainable needs) How can I meet (or get a supportive friend to help me meet) these needs right now?
• Try to maintain as regular a schedule as possible. Avoid unrealistic expectations/goals for yourself.
• Maintain an awareness of your body’s need for nutrition and rest. If symptoms arise that are new or unusual, see your physician.
• Listening to your body is critical during this period of time. Listening is different than doing something for your body. Listening means to honor the messages your body is sending you. Words or tears that are unexpressed can cause a lump in our throats. Anger that is held inside can give us an upset stomach, headache, or tight neck and shoulders. Wringing hands, shakiness or queasy stomach can express fear. Guilt or resentment can feel like physical burdens we are carrying (I feel like I weigh a ton). Sorrow or depression can feel like pressure or breaking in our heart or chest area. Breathing may be labored or we may breath great sighs. Often a combination of these feelings is felt. It can be helpful to ask the part of the body that feels these sensations the following questions: If you could talk, what would you say? What picture or symbol best expresses you right now? What do you look like? What is happening right now?
• Writing a letter or drawing a picture of your loss or grief can be a healing way to get your feelings from the inside to the outside. Writing to others whom you feel incomplete with, or writing a letter to yourself, or to an institution, physician, hospital, or even to God, enables you to process what your body longs to say. It also enables you to release anger, frustration, and isolation and move to a forgiving, life-affirming love for yourself and those who have touched your life.
From The Life Center of the Suncoast, Inc. www.lifecentertampa.org
How to Deal with Grief
What is grief?
Grief is the normal response of sorrow, emotion, and confusion that comes from losing someone or something important to you. It is a natural part of life. Grief is a typical reaction to death, divorce, job loss, a move away from family and friends, or loss of good health due to illness.
How does grief feel?
Just after the death or loss, you may feel empty and number, as if you are in shock. You may notice physical changes such as trembling, nausea, trouble breathing, muscle weakness, dry mouth, or trouble sleeping and eating.
You may become angry – at a situation, a particular person, or just angry in general. Almost everyone in grief also experiences guilt. Guilt is often expressed as “I could have, I should have, and I wish I would have” statements.
People in grief may have strange dreams or nightmares, be absent-minded, withdraw socially, or lack the desire to return to work. While these feelings and behaviors are normal during grief, they will pass.
How long does grief last?
Grief lasts as long as it takes you to accept and learn to live with your loss. For some people, grief lasts a few months. For others, grieving may take years.
The length of time spent grieving is different for each person. There are many reasons for the differences, including personality, health, coping style, culture, family background, and life experiences. The time spent grieving also depend on your relationship with the person lost and how prepared you were for the loss.
How will I know when I am done grieving?
Every person who experiences a death or other loss must complete a four-step grieving process.
The grieving process is over only when a person completes these four steps:
1. Accept the loss
2. Work through and feel the physical and emotional pain of grief
3. Adjust to living in a world without the person or item lost
4. Move on with life
How does grief differ from depression?
Depression is more than a feeling of grief after losing someone or something you love. Clinical depression is a whole body disorder. It can take over the way you think and feel.
Symptoms of depression include:
o A sad, anxious, or “empty” mood that won’t go away
o Loss of interest in what you used to enjoy
o Low energy, fatigue, feeling “slowed down”
o Changes in sleep patterns
o Loss of appetite, weight loss, or weight gain.
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief is the normal response of sorrow, emotion, and confusion that comes from losing someone or something important to you. It is a natural part of life. Grief is a typical reaction to death, divorce, job loss, a move away from family and friends, or loss of good health due to illness.
How does grief feel?
Just after the death or loss, you may feel empty and number, as if you are in shock. You may notice physical changes such as trembling, nausea, trouble breathing, muscle weakness, dry mouth, or trouble sleeping and eating.
You may become angry – at a situation, a particular person, or just angry in general. Almost everyone in grief also experiences guilt. Guilt is often expressed as “I could have, I should have, and I wish I would have” statements.
People in grief may have strange dreams or nightmares, be absent-minded, withdraw socially, or lack the desire to return to work. While these feelings and behaviors are normal during grief, they will pass.
How long does grief last?
Grief lasts as long as it takes you to accept and learn to live with your loss. For some people, grief lasts a few months. For others, grieving may take years.
The length of time spent grieving is different for each person. There are many reasons for the differences, including personality, health, coping style, culture, family background, and life experiences. The time spent grieving also depend on your relationship with the person lost and how prepared you were for the loss.
How will I know when I am done grieving?
Every person who experiences a death or other loss must complete a four-step grieving process.
The grieving process is over only when a person completes these four steps:
1. Accept the loss
2. Work through and feel the physical and emotional pain of grief
3. Adjust to living in a world without the person or item lost
4. Move on with life
How does grief differ from depression?
Depression is more than a feeling of grief after losing someone or something you love. Clinical depression is a whole body disorder. It can take over the way you think and feel.
Symptoms of depression include:
o A sad, anxious, or “empty” mood that won’t go away
o Loss of interest in what you used to enjoy
o Low energy, fatigue, feeling “slowed down”
o Changes in sleep patterns
o Loss of appetite, weight loss, or weight gain.
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief a normal response to loss
From the Life Center of the Suncoast, Inc., www.lifecentertampa.org
Grief is a normal response to the loss of a loved one. Reactions from grief can affect the whole person. These reactions may include physical, emotional, psychological and behavioral changes. The most important thing for you to remember is that these reactions are a normal response to loss. You may experience none, some, or all of the following:
Physical Psychological
o Weakness
o Tightness in the chest
o Loss of energy
o Loss of sexual desire
o Upset stomach
o Feelings of exhaustion
o Restlessness o Feelings of confusion
o A sense of unreality
o Difficulty concentrating
o Preoccupation with thoughts of your loved one
o Dreams of your loved one
o A sense of the presence of your loved one
Emotional Behavioral
o Sadness
o Anxiety
o Fear
o Anger
o Guilt
o Despair
o Feelings of helplessness
o Loneliness
o Feelings of emptiness
o Feeling numb
o Loss of ability to fee pleasure o Angry outbursts
o Impatience
o Agitation
o Withdrawal from relatives and friends
o Social isolation
Grief is a normal response to the loss of a loved one. Reactions from grief can affect the whole person. These reactions may include physical, emotional, psychological and behavioral changes. The most important thing for you to remember is that these reactions are a normal response to loss. You may experience none, some, or all of the following:
Physical Psychological
o Weakness
o Tightness in the chest
o Loss of energy
o Loss of sexual desire
o Upset stomach
o Feelings of exhaustion
o Restlessness o Feelings of confusion
o A sense of unreality
o Difficulty concentrating
o Preoccupation with thoughts of your loved one
o Dreams of your loved one
o A sense of the presence of your loved one
Emotional Behavioral
o Sadness
o Anxiety
o Fear
o Anger
o Guilt
o Despair
o Feelings of helplessness
o Loneliness
o Feelings of emptiness
o Feeling numb
o Loss of ability to fee pleasure o Angry outbursts
o Impatience
o Agitation
o Withdrawal from relatives and friends
o Social isolation
LEAN ON ME: HELPING A PARTNER COPE WITH GRIEF
The loss of a friend, family member or loved one can be overwhelming for anyone, but by being part of a strong support system you can play an important role in his or her healing process. Being a great listener is a given, but by recognizing and understanding the complexity of the emotions of grief you will be in a much better position to help someone through the healing process.
The History of the 5 Stages - are they appropriate?
Many doctors, clinicians, and caregivers still use the following stages as milestones for the bereaved. Yet for those struggling with the loss of a loved one, the idea that grief recovery follows a standard timeline of set stages can seem ridiculous, if not infuriating. Certainly those who have had to heal from a painful loss are well aware that the process doesn't fit in to neat little boxes.
These five stages were originally outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying, and referred to the steps that a terminally ill patient may go through upon learning of the finality of their situation. These five stages synthesized what caregivers had witnessed in dying patients from studying their coping mechanisms. The stages at that point were not yet known as the 5 Stages of Grief, but rather “The 5 Stages of Receiving Catastrophic News.” Since then, these stages have morphed into what is commonly known as The 5 Stages of Grief:
Denial - This isn’t happening; this isn't real.
Anger - Why has this befallen me? What have I done to deserve this suffering?
Bargaining - If I can get out of this, I promise will be a better person.
Depression - I don’t know what I’m going to do. I don’t care anymore what happens to me.
Acceptance - Okay. This is real, and I’m ready for whatever I have to go through.
How long is too long to be grieving?
On the surface, these 5 Stages of Grief seem sensible. And when the world is spiraling seemingly out of control due to grief, these stages may provide a certain comfort in their structure. But the idea that everyone could go through the same stages at the same time and in the same order led to the early notion that those not following the standard progress of grief may have a pathological form that needed professional help. Worse still, if the bereaved weren’t completely through the stages by a certain time, some might be treated as if their grief was out of sorts or inappropriate to their situation.
More recent efforts have been underway by bereavement researchers to look at how people grieve over time. Synthesizing several grief theories, Jacobs (1993) presented a hypothesized set of responses to grief that expanded the stages:
1. Numbness-disbelief
2. Yearning-anger-anxiety
3. Depression-mourning
4. Recovery
Recent studies (Bonanno, Wortman, et al 2002; 2004) have also highlighted several distinct recovery paths, and found that normal grief reactions persisted even eighteen months after the loss occurred.
Testing the theory that grief occurred in stages, a 2007 study (Maciejewski, Zhan, Block, Prigerson,) found that participants whose partners died due to natural causes simultaneously felt all of the stages of grief to various degrees at each time point measured, with the feelings of acceptance being greatest even at the beginning when a person was closest to the loss, and this acceptance increased over time. And while many might feel that depression/sadness would be next on the list, yearning was the next most frequent response reported throughout the study.
This last study highlights a significant fact: anger and depression do not have to be the defining, lasting features of the grief process. It's important to note that this study raised controversy when it was first published because all of the grief indicators were in decline by six months after the loss, and the authors implied that further evaluation and potential referral for treatment may be necessary after that time. But the timeframe for the course of normal grief and adjustment could last much longer, with survivors incorporating positive memories into their lives years after their loss.
Carnelley, Wortman, Bolger and Burke (2006) found that widowed respondents continued to experience memories and even participate in conversations about their deceased loved one beyond the first four years after the loss. Contrary to popular belief, this was a normal response to the loss of a loved one, not inappropriate attachment or dependence. This was also a sign of good adjustment when participants were able to focus on the positive aspects of memories of their loved one. They also found that “anniversary reactions (i.e., painful reminders of the loss during a specified time/reminder)” were sometimes experienced for decades, with the intensity of these reactions dropping quickly in the first few years. While these might be considered a setback in recovery, it’s important to emphasize the commonality of such reactions (infrequently as they may be) as a normal response in the grief process, not a pathological one. In fact, respondents of a study by Harvey and Hansen (2000) reported that they frequently engaged in “account making and confiding:” talking about their previous relationships with their new partners and /or close others as a way of coping with the loss (although this was used more by women than with men). Many emphasized the positive impact this had on their well being. So if your partner continues to discuss memories and tell stories of the deceased well after the loss, do not despair it can be a normal part of the healing process.
How to help those that are grieving
The grief work premise is that those grieving must confront and express their emotions in order to fully heal from their loss. Most who are familiar with grief work would say that people should reflect, process, and express all that is coming forth regarding the loss of their loved one. But researchers have found that disclosing grief isn’t always beneficial. Stroebe and colleagues (1996; 1997, from Pennebaker 2001) found those that were asked to disclose their grief through writing didn’t differ in the physical or mental health after a one year follow-up. In another study, family members were rated by those grieving as less helpful than friends (Marwit and Carusa 1998).
Obviously this is an intense time, and many factors need to be considered when helping those affected by grief and loss. Being sensitive to the type of loss, overall impact, and, if you are involved your own feelings of grief, may improve your support to those that are grieving. For instance, death due to an unexpected event versus a long-term, painful illness might elicit different reactions from survivors. In the case of a partner passing after a long struggle with a terminal illness, the survivor may have already worked though some of their grieving during the time of their partner’s illness. In addition to grief, the survivor may also feel relief that their partner isn't suffering. But when a partner has died suddenly and unexpectedly, talking about the loss and processing the feelings can be beneficial in coming to terms with the event.
When an intimate partner dies, it’s quite possible to set off a crisis of the entire support system, and friends and family may have difficulty providing support to a partner because they are grieving themselves. Other researchers found that outsiders may be unaware of the full magnitude of the loss, with changes in financial security, emotional support, practical help, and so forth for the survivor. Death can elicit powerful feelings that might overwhelm the surrounding survivors with tumultuous and vulnerable feelings, and often not knowing what to do, those genuinely trying to help might create more harm than good.
Wortman, Wolff and Bonanno (2004) provide culled evidence of three behavior types that can be detrimental to the bereaved:
1. Discouraging open expression or discussion of feelings about the loss
2. Encouraging recovery
3. Falling back on clich'd or scripted support attempts that trivialize the bereaved issues.
What is beneficial is allowing survivors the opportunity to talk about their feelings on their own terms. Expressing concern without pushing advice, as well as reaffirming the presence of support (without necessarily forcing it) is also helpful. If you’re unsure how to approach the situation, it might be best to take a cue from your partner in how open and willing they are to talk about the loss. Finally, talking with others in a similar situation (e.g., a grief support group) is also thought to be beneficial.
Grief Work: Moving Beyond the 5 Stages
The Counseling for Loss and Life Changes group (TLC) suggests that grief work actually begins where the last “stage” of acceptance leaves off. A common definition they use is summarized by the acronym TEAR:
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the loss
R = Reinvest in the new reality
If you know someone who is grieving right now, make sure they understand they can come to you on their terms. If you are struggling with how best to support them, sometimes asking then “What can I do that would be helpful to you?” or “What do you need from me?” may get a beneficial discussion started.
If you are grieving and would like to seek professional help yourself, pick a counselor who is trained specifically in grief intervention work, and if something isn’t working for you, be sure to let them know. Complicated grief does exist, and if you feel you are experiencing thoughts and emotions beyond what is considered “normal” try reaching out to a trusted doctor, clinician, or caregiver for more information and support. While interventions and therapy can be appropriate for some individuals, it isn't necessary for everyone. Sometimes the best way to heal is just by accepting that adjustment and recovery go beyond five easy stages. Those closest to you can be a great source of support.
by: Heather Setrakian, MA, Associate Research Scientist
eHarmonylabs.com
References and Further Reading:
Counseling For Loss & Life Changes (1997). Article 8- Beware the 5 Stages of “Grief.” Retrieved June 7, 2007 from http://www.counselingforloss.com/article8.htm
Carnelley, K.B., Wortman, C.B., Bolger, N., & Burke, C.T. (2006). The time course of grief reactions to spousal loss: Evidence from a national probability sample. Journal of Personality and Psychology, 91, 476-492.
Harvey, J.H., & Hansen, A.M (2000). Loss and bereavement in close romantic relationships. In C. Hendrick & S.S. Hendrick (Eds.), Close relationships: A sourcebook (pp. 359-370). Thousand Oaks, CA: Sage Publications, Inc.
Jacobs, S. (1993). Pathological grief: Maladaptation to loss. Washington, D.C.: American Psychiatric Press.
Maciejewski, P.K., Zhang, B., Block, S.D., Prigerson, H.G., (2007). An empirical examination of the stage theory of grief. Journal of American Medical Association, 297, 716-724.
Marwit, S.J., & Carusa, S.S. (1998). Communicated support following loss: Examining the experiences of parental death and parental divorce in adolescence. Death Studies, 22, 237-255.
Pennebaker, J.W., Zech, E., and Rime, B (2001). Disclosing and Sharing Emotion: Psychological, Social and Health Consequences. In M.S. Stroebe, W. Stroebe, R.O. Hansson, & H. Schut (Eds.) Handbook of bereavement research: Consequences, coping, and care (pp. 517-539). Washington D.C.: American Psychological Association.
Wortman, C.B., Wolff, K., Bonanno, G.A. (2004). Loss of an intimate partner through death. In D.J. Mashek, D.J.,& A. Aron (Eds.), Handbook of Closeness and Intimacy (pp.305-320). Mahweh, NJ: Lawrence Erlbaum Associates.
The History of the 5 Stages - are they appropriate?
Many doctors, clinicians, and caregivers still use the following stages as milestones for the bereaved. Yet for those struggling with the loss of a loved one, the idea that grief recovery follows a standard timeline of set stages can seem ridiculous, if not infuriating. Certainly those who have had to heal from a painful loss are well aware that the process doesn't fit in to neat little boxes.
These five stages were originally outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying, and referred to the steps that a terminally ill patient may go through upon learning of the finality of their situation. These five stages synthesized what caregivers had witnessed in dying patients from studying their coping mechanisms. The stages at that point were not yet known as the 5 Stages of Grief, but rather “The 5 Stages of Receiving Catastrophic News.” Since then, these stages have morphed into what is commonly known as The 5 Stages of Grief:
Denial - This isn’t happening; this isn't real.
Anger - Why has this befallen me? What have I done to deserve this suffering?
Bargaining - If I can get out of this, I promise will be a better person.
Depression - I don’t know what I’m going to do. I don’t care anymore what happens to me.
Acceptance - Okay. This is real, and I’m ready for whatever I have to go through.
How long is too long to be grieving?
On the surface, these 5 Stages of Grief seem sensible. And when the world is spiraling seemingly out of control due to grief, these stages may provide a certain comfort in their structure. But the idea that everyone could go through the same stages at the same time and in the same order led to the early notion that those not following the standard progress of grief may have a pathological form that needed professional help. Worse still, if the bereaved weren’t completely through the stages by a certain time, some might be treated as if their grief was out of sorts or inappropriate to their situation.
More recent efforts have been underway by bereavement researchers to look at how people grieve over time. Synthesizing several grief theories, Jacobs (1993) presented a hypothesized set of responses to grief that expanded the stages:
1. Numbness-disbelief
2. Yearning-anger-anxiety
3. Depression-mourning
4. Recovery
Recent studies (Bonanno, Wortman, et al 2002; 2004) have also highlighted several distinct recovery paths, and found that normal grief reactions persisted even eighteen months after the loss occurred.
Testing the theory that grief occurred in stages, a 2007 study (Maciejewski, Zhan, Block, Prigerson,) found that participants whose partners died due to natural causes simultaneously felt all of the stages of grief to various degrees at each time point measured, with the feelings of acceptance being greatest even at the beginning when a person was closest to the loss, and this acceptance increased over time. And while many might feel that depression/sadness would be next on the list, yearning was the next most frequent response reported throughout the study.
This last study highlights a significant fact: anger and depression do not have to be the defining, lasting features of the grief process. It's important to note that this study raised controversy when it was first published because all of the grief indicators were in decline by six months after the loss, and the authors implied that further evaluation and potential referral for treatment may be necessary after that time. But the timeframe for the course of normal grief and adjustment could last much longer, with survivors incorporating positive memories into their lives years after their loss.
Carnelley, Wortman, Bolger and Burke (2006) found that widowed respondents continued to experience memories and even participate in conversations about their deceased loved one beyond the first four years after the loss. Contrary to popular belief, this was a normal response to the loss of a loved one, not inappropriate attachment or dependence. This was also a sign of good adjustment when participants were able to focus on the positive aspects of memories of their loved one. They also found that “anniversary reactions (i.e., painful reminders of the loss during a specified time/reminder)” were sometimes experienced for decades, with the intensity of these reactions dropping quickly in the first few years. While these might be considered a setback in recovery, it’s important to emphasize the commonality of such reactions (infrequently as they may be) as a normal response in the grief process, not a pathological one. In fact, respondents of a study by Harvey and Hansen (2000) reported that they frequently engaged in “account making and confiding:” talking about their previous relationships with their new partners and /or close others as a way of coping with the loss (although this was used more by women than with men). Many emphasized the positive impact this had on their well being. So if your partner continues to discuss memories and tell stories of the deceased well after the loss, do not despair it can be a normal part of the healing process.
How to help those that are grieving
The grief work premise is that those grieving must confront and express their emotions in order to fully heal from their loss. Most who are familiar with grief work would say that people should reflect, process, and express all that is coming forth regarding the loss of their loved one. But researchers have found that disclosing grief isn’t always beneficial. Stroebe and colleagues (1996; 1997, from Pennebaker 2001) found those that were asked to disclose their grief through writing didn’t differ in the physical or mental health after a one year follow-up. In another study, family members were rated by those grieving as less helpful than friends (Marwit and Carusa 1998).
Obviously this is an intense time, and many factors need to be considered when helping those affected by grief and loss. Being sensitive to the type of loss, overall impact, and, if you are involved your own feelings of grief, may improve your support to those that are grieving. For instance, death due to an unexpected event versus a long-term, painful illness might elicit different reactions from survivors. In the case of a partner passing after a long struggle with a terminal illness, the survivor may have already worked though some of their grieving during the time of their partner’s illness. In addition to grief, the survivor may also feel relief that their partner isn't suffering. But when a partner has died suddenly and unexpectedly, talking about the loss and processing the feelings can be beneficial in coming to terms with the event.
When an intimate partner dies, it’s quite possible to set off a crisis of the entire support system, and friends and family may have difficulty providing support to a partner because they are grieving themselves. Other researchers found that outsiders may be unaware of the full magnitude of the loss, with changes in financial security, emotional support, practical help, and so forth for the survivor. Death can elicit powerful feelings that might overwhelm the surrounding survivors with tumultuous and vulnerable feelings, and often not knowing what to do, those genuinely trying to help might create more harm than good.
Wortman, Wolff and Bonanno (2004) provide culled evidence of three behavior types that can be detrimental to the bereaved:
1. Discouraging open expression or discussion of feelings about the loss
2. Encouraging recovery
3. Falling back on clich'd or scripted support attempts that trivialize the bereaved issues.
What is beneficial is allowing survivors the opportunity to talk about their feelings on their own terms. Expressing concern without pushing advice, as well as reaffirming the presence of support (without necessarily forcing it) is also helpful. If you’re unsure how to approach the situation, it might be best to take a cue from your partner in how open and willing they are to talk about the loss. Finally, talking with others in a similar situation (e.g., a grief support group) is also thought to be beneficial.
Grief Work: Moving Beyond the 5 Stages
The Counseling for Loss and Life Changes group (TLC) suggests that grief work actually begins where the last “stage” of acceptance leaves off. A common definition they use is summarized by the acronym TEAR:
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the loss
R = Reinvest in the new reality
If you know someone who is grieving right now, make sure they understand they can come to you on their terms. If you are struggling with how best to support them, sometimes asking then “What can I do that would be helpful to you?” or “What do you need from me?” may get a beneficial discussion started.
If you are grieving and would like to seek professional help yourself, pick a counselor who is trained specifically in grief intervention work, and if something isn’t working for you, be sure to let them know. Complicated grief does exist, and if you feel you are experiencing thoughts and emotions beyond what is considered “normal” try reaching out to a trusted doctor, clinician, or caregiver for more information and support. While interventions and therapy can be appropriate for some individuals, it isn't necessary for everyone. Sometimes the best way to heal is just by accepting that adjustment and recovery go beyond five easy stages. Those closest to you can be a great source of support.
by: Heather Setrakian, MA, Associate Research Scientist
eHarmonylabs.com
References and Further Reading:
Counseling For Loss & Life Changes (1997). Article 8- Beware the 5 Stages of “Grief.” Retrieved June 7, 2007 from http://www.counselingforloss.com/article8.htm
Carnelley, K.B., Wortman, C.B., Bolger, N., & Burke, C.T. (2006). The time course of grief reactions to spousal loss: Evidence from a national probability sample. Journal of Personality and Psychology, 91, 476-492.
Harvey, J.H., & Hansen, A.M (2000). Loss and bereavement in close romantic relationships. In C. Hendrick & S.S. Hendrick (Eds.), Close relationships: A sourcebook (pp. 359-370). Thousand Oaks, CA: Sage Publications, Inc.
Jacobs, S. (1993). Pathological grief: Maladaptation to loss. Washington, D.C.: American Psychiatric Press.
Maciejewski, P.K., Zhang, B., Block, S.D., Prigerson, H.G., (2007). An empirical examination of the stage theory of grief. Journal of American Medical Association, 297, 716-724.
Marwit, S.J., & Carusa, S.S. (1998). Communicated support following loss: Examining the experiences of parental death and parental divorce in adolescence. Death Studies, 22, 237-255.
Pennebaker, J.W., Zech, E., and Rime, B (2001). Disclosing and Sharing Emotion: Psychological, Social and Health Consequences. In M.S. Stroebe, W. Stroebe, R.O. Hansson, & H. Schut (Eds.) Handbook of bereavement research: Consequences, coping, and care (pp. 517-539). Washington D.C.: American Psychological Association.
Wortman, C.B., Wolff, K., Bonanno, G.A. (2004). Loss of an intimate partner through death. In D.J. Mashek, D.J.,& A. Aron (Eds.), Handbook of Closeness and Intimacy (pp.305-320). Mahweh, NJ: Lawrence Erlbaum Associates.
Tuesday, April 6, 2010
Dealing with frustration
I have come to realize that I no longer tolerate other people trying to coerce me into doing something I do not want to do. It is also frustrating for someone to try to make me feel guilty for my lack of desire to do something or go somewhere. I do not have time to waste on those things.
Yes, I still do things I don’t want to do if I think it benefits the other person in a meaningful way. That is the loving and caring thing to do. I try to live my life without causing harm to any other living being. I am human, however, and have been known to shout at someone when I am frustrated in some way.
In talking with my therapist I have learned that frustration leads to anger and that anger unexpressed leads to depression. Since I have a predisposition to depression, both hereditary, emotional, and physical, I have to watch out.
Last week I was especially frustrated and I needed to release it before I got any worse. I seem to be incapable of yelling, hitting things, etc. so I did the only thing I could think of, I yelled at my therapist by email. I felt sorry afterward and apologized and told him today that I was embarrassed to come back because I had yelled but he said he was glad I had done so. It seems like that may work for me and he does not mind receiving my frustrated, angry, fighting mad emails. After all, they are not directed at him, and, even if they were, it is important for him to know if he has somehow said or done something that has frustrated me.
Today I am much calmer and happier. I have less than two very, very busy weeks before out trip to Utila where all my stress and frustration will evaporate in the beautiful coral reef seas. I am focusing as much of my self as I can on maintaining that image in the front of my mind.
As the song says, Let it Be, and so I shall try.
Yes, I still do things I don’t want to do if I think it benefits the other person in a meaningful way. That is the loving and caring thing to do. I try to live my life without causing harm to any other living being. I am human, however, and have been known to shout at someone when I am frustrated in some way.
In talking with my therapist I have learned that frustration leads to anger and that anger unexpressed leads to depression. Since I have a predisposition to depression, both hereditary, emotional, and physical, I have to watch out.
Last week I was especially frustrated and I needed to release it before I got any worse. I seem to be incapable of yelling, hitting things, etc. so I did the only thing I could think of, I yelled at my therapist by email. I felt sorry afterward and apologized and told him today that I was embarrassed to come back because I had yelled but he said he was glad I had done so. It seems like that may work for me and he does not mind receiving my frustrated, angry, fighting mad emails. After all, they are not directed at him, and, even if they were, it is important for him to know if he has somehow said or done something that has frustrated me.
Today I am much calmer and happier. I have less than two very, very busy weeks before out trip to Utila where all my stress and frustration will evaporate in the beautiful coral reef seas. I am focusing as much of my self as I can on maintaining that image in the front of my mind.
As the song says, Let it Be, and so I shall try.
Michael J Fox interview
As I mentioned in my previous post, the May, 2010, Reader’s Digest had an interview by Amy Wallace with Michael J. Fox. I was moved beyond belief by his interview. His inspiration has given me hope of further acceptance of this menace that “eats” our brains. I am quoting parts of the interview here with some minor paraphrasing where I have left out parts of a sentence at the beginning of a paragraph. I hope you enjoy it as much as I did and do.
Most of the following are direct quotations from that interview.
Michael J Fox philosophy
I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, “In this moment, I’m struggling and I can’t do what I want to do”, not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.
Let me make this suggestion. Don’t spend a lot of time imagining he worst-case scenario. It rarely goes down as you imagine it well, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide, it will take time, but you’ll find that even the gravest problems are finite, and your choices are infinite.
There is one basic lesson I’ve learned, it is the cardinal importance of this moment – right now.
At first (when he was first diagnosed at age 30) I went into denial. Refusing to disclose my situation to everyone but family, and covering the symptoms with medication, I was really trying to hide from myself. But with no escape from the disease, its symptoms, and its challenges, I was forced, after exercising in vain all other options, to resort to acceptance, which simply means acknowledging the reality of a situation. As my acceptance grew, I came to understand that loss is not a vacuum. If I didn’t impulsively try to fill the space it creates, it gradually began to fill itself, or at least present choices.
Most of the following are direct quotations from that interview.
Michael J Fox philosophy
I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, “In this moment, I’m struggling and I can’t do what I want to do”, not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.
Let me make this suggestion. Don’t spend a lot of time imagining he worst-case scenario. It rarely goes down as you imagine it well, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide, it will take time, but you’ll find that even the gravest problems are finite, and your choices are infinite.
There is one basic lesson I’ve learned, it is the cardinal importance of this moment – right now.
At first (when he was first diagnosed at age 30) I went into denial. Refusing to disclose my situation to everyone but family, and covering the symptoms with medication, I was really trying to hide from myself. But with no escape from the disease, its symptoms, and its challenges, I was forced, after exercising in vain all other options, to resort to acceptance, which simply means acknowledging the reality of a situation. As my acceptance grew, I came to understand that loss is not a vacuum. If I didn’t impulsively try to fill the space it creates, it gradually began to fill itself, or at least present choices.
Off to the Dentist
Over the weekend I chipped one of my lower front teeth so Monday morning found me in as an emergency for a fix. It turns out I need a veneer but I was not prepared to sit in the chair with my mouth open for that long. I got a temporary fix instead and the cost of that will go toward the cost of the veneer later.
The problem I discovered almost as soon as I sat down and a technician looked at me was the pain I experienced as soon as I opened my mouth. When my dentist came in to do the repair and I had to keep my mouth open for about 15 minutes my lower job started trembling from the pressure of just keeping my mouth open.
Afterward, my jaw hurt all the way up through my eyes and out my ears. Even all of my teeth hurt, although he had used no anesthetic. I worry how I am going to manage it when I have to keep my mouth open for more than 30-45 minutes for the drilling, molds, etc. to be done. The Parkinson’s part of this disease has really hit me harder than I had thought.
On another note, I had posted a rather negative post over the weekend which I have deleted. I am human, I admit, and I have down days like everyone else, but that one was too down to post. I see my therapist today and will go over it all with him. He responded to my email over the weekend and that helped. I am still not 100 percent back to my cheery, sunshiny self, but I will get there soon as we go to Utila in less than 2 weeks.
One technique I used while I was down was to visualize an experience I had on a night dive in Utila. I found a small, baby peacock flounder who was only about 4 inches long. I shone my light down right in front of him and lay in the sand and watched him eat. His little eye stalks looked from me to his food and he was so cute. I use he as I have no idea how to determine a flounders sex. I lay in the and about a foot away from him where I could study him up close and personal. After about 15 minutes I looked up and realized I was the only person in the water and surfaced back to the boat. I just love those eyeball to eyeball glimpses into another creature’s life.
I just read an interview with Michael J. Fox in the Reader’s Digest. It inspired me and made me feel somewhat embarrassed to let some bad moments interfere with my experiencing life in all its glory. I am glad, though, that I was able to calm myself with something from my diving experience. Those memories and visualizations are an important arsenal in my fight against depression, anxiety, and this disease. Thank you, Michael J. Fox, for your inspiration and your help to fight Parkinson’s Disease, and, hopefully, help us with MSA also get assistance in finding a cure.
The problem I discovered almost as soon as I sat down and a technician looked at me was the pain I experienced as soon as I opened my mouth. When my dentist came in to do the repair and I had to keep my mouth open for about 15 minutes my lower job started trembling from the pressure of just keeping my mouth open.
Afterward, my jaw hurt all the way up through my eyes and out my ears. Even all of my teeth hurt, although he had used no anesthetic. I worry how I am going to manage it when I have to keep my mouth open for more than 30-45 minutes for the drilling, molds, etc. to be done. The Parkinson’s part of this disease has really hit me harder than I had thought.
On another note, I had posted a rather negative post over the weekend which I have deleted. I am human, I admit, and I have down days like everyone else, but that one was too down to post. I see my therapist today and will go over it all with him. He responded to my email over the weekend and that helped. I am still not 100 percent back to my cheery, sunshiny self, but I will get there soon as we go to Utila in less than 2 weeks.
One technique I used while I was down was to visualize an experience I had on a night dive in Utila. I found a small, baby peacock flounder who was only about 4 inches long. I shone my light down right in front of him and lay in the sand and watched him eat. His little eye stalks looked from me to his food and he was so cute. I use he as I have no idea how to determine a flounders sex. I lay in the and about a foot away from him where I could study him up close and personal. After about 15 minutes I looked up and realized I was the only person in the water and surfaced back to the boat. I just love those eyeball to eyeball glimpses into another creature’s life.
I just read an interview with Michael J. Fox in the Reader’s Digest. It inspired me and made me feel somewhat embarrassed to let some bad moments interfere with my experiencing life in all its glory. I am glad, though, that I was able to calm myself with something from my diving experience. Those memories and visualizations are an important arsenal in my fight against depression, anxiety, and this disease. Thank you, Michael J. Fox, for your inspiration and your help to fight Parkinson’s Disease, and, hopefully, help us with MSA also get assistance in finding a cure.
Thursday, March 25, 2010
The Mask
One area I did not get rolfed was my face. I decided my walking ability, and the ability to put my arms up and back were more important. However, the past month I have watched my face steadily take on a fixed image. My mouth no longer smiles and I have what looks like frown lines from the corners of my lips. I did try to force my lips up into a smile as my own form of physical therapy and the pain was immense. I did, however, manage to lift the corner of my left lip ever so slightly.
When I first looked into a mirror and saw my face with the mask, I was shocked. That could not be me! I am a person who has always smiled and laughed and now I looked like an old hag or crone with a bad attitude. I have always avoided looking into mirrors which is why I did not notice the subtle changed in my face any earlier. It hurts to see yourself looking like a completely different person. First I gained 60 pounds from all my meds and then my face changes. I admit, I feel a bit sorry for myself and I cried for a short time, actually I leaked since I don’t ever actually cry. Just tears leaking from my eyes. I had to put a stop to that pity party as quickly as possible as that is not who I want to be.
I am contented with the person inside this skin, even if I am not contented with the outside shell. I guess I just need to remember that, after all, my outside body is just a shell that holds my soul and my self. I just need to remind myself of that when I happen to glance in a mirror.
May peace and health be with you all.
When I first looked into a mirror and saw my face with the mask, I was shocked. That could not be me! I am a person who has always smiled and laughed and now I looked like an old hag or crone with a bad attitude. I have always avoided looking into mirrors which is why I did not notice the subtle changed in my face any earlier. It hurts to see yourself looking like a completely different person. First I gained 60 pounds from all my meds and then my face changes. I admit, I feel a bit sorry for myself and I cried for a short time, actually I leaked since I don’t ever actually cry. Just tears leaking from my eyes. I had to put a stop to that pity party as quickly as possible as that is not who I want to be.
I am contented with the person inside this skin, even if I am not contented with the outside shell. I guess I just need to remember that, after all, my outside body is just a shell that holds my soul and my self. I just need to remind myself of that when I happen to glance in a mirror.
May peace and health be with you all.
Rolfed Again
I had another Rolfing session last Thursday. The results of the first, if you read about it, allowed me to walk, albeit with my cane, 2 miles which was a tremendous accomplishment for me. The session took about 2 hours but on Friday I woke up and was free from the pain in my hip that had been there for 20 years and actually was able to walk, unassisted without a limp and without my left heal dragging behind me. On Saturday we ate dinner with our rolfer and his wife (who works hand in hand with him) and even they were amazed how stable I was. I though I would need to sleep more for a day or so as my body adjusts to all the adjustments made to it but I was so well on Friday I did not even take a nap.
Several people asked me about Rolfing when I first mentioned it so I though I would include the address here
www.rolf.org. This is a brief introduction to what Rolfing does.
Rolfing® Structural Integration
A form of hands-on manipulation and movement education developed by Ida P. Rolf over 50 years ago, Rolfing Structural Integration works on the connective tissue (fascia) to release,realign and balance the whole body.
Rolfing Structural Integration enhances your posture and freedom of movement. It is not painful, and may bring dramatic results, including
• injury recovery, including repetitive motion
• pain reduction, including back pain
• stress relief
• increased flexibility
• headache relief
• better balance and ease
Yesterday my husband and I went to a place out of town where there was an older gentleman who sold old bikes. He had a fixer upper trike that we purchased for seventy-five dollars. Our next door neighbor is putting on new tires, a more comfortable seat that was supplied with the purchase, and fixing some other minor problems. I expect later this weekend my husband and I will go out to Flatwoods County Park, a six mile paved loop through the woods for bicycling and skating. The last time we went I rode my scooter but it ran out of battery too fast and my husband was unable to go such a slow speed. I doubt if I go much faster on a trike, but I will turn around after 30 minutes and head back to the truck to sit in the shade and wait for him to finish the course.
Being able to move is such a wonderful thing. I never imagined I would be able to walk so well. Everyone is so amazed. I go in for another session the week before we leave for Utila to go diving. I want to make certain I am in tip top shape for that.
If you live in a city and you want to try getting rolfed, look under either rolfing or massage therapy in your yellow pages. Some phone companies list it differently. Just look for a certified rolfer who has gone through the complete Rolf Institute training, and, preferably, an advanced rolfer and movement specialist. It is worth every penny, and the cost is a pittance compared to the cost of doctors and other treatments.
Have a wonderful weekend
Several people asked me about Rolfing when I first mentioned it so I though I would include the address here
www.rolf.org. This is a brief introduction to what Rolfing does.
Rolfing® Structural Integration
A form of hands-on manipulation and movement education developed by Ida P. Rolf over 50 years ago, Rolfing Structural Integration works on the connective tissue (fascia) to release,realign and balance the whole body.
Rolfing Structural Integration enhances your posture and freedom of movement. It is not painful, and may bring dramatic results, including
• injury recovery, including repetitive motion
• pain reduction, including back pain
• stress relief
• increased flexibility
• headache relief
• better balance and ease
Yesterday my husband and I went to a place out of town where there was an older gentleman who sold old bikes. He had a fixer upper trike that we purchased for seventy-five dollars. Our next door neighbor is putting on new tires, a more comfortable seat that was supplied with the purchase, and fixing some other minor problems. I expect later this weekend my husband and I will go out to Flatwoods County Park, a six mile paved loop through the woods for bicycling and skating. The last time we went I rode my scooter but it ran out of battery too fast and my husband was unable to go such a slow speed. I doubt if I go much faster on a trike, but I will turn around after 30 minutes and head back to the truck to sit in the shade and wait for him to finish the course.
Being able to move is such a wonderful thing. I never imagined I would be able to walk so well. Everyone is so amazed. I go in for another session the week before we leave for Utila to go diving. I want to make certain I am in tip top shape for that.
If you live in a city and you want to try getting rolfed, look under either rolfing or massage therapy in your yellow pages. Some phone companies list it differently. Just look for a certified rolfer who has gone through the complete Rolf Institute training, and, preferably, an advanced rolfer and movement specialist. It is worth every penny, and the cost is a pittance compared to the cost of doctors and other treatments.
Have a wonderful weekend
Sunday, March 7, 2010
Launched not
On February 4, I was getting a rolfing session to loosen up some of my stuck body so I could walk more easily, when my husband mentioned to our rolfer and good friend that we were going to go to Kennedy Space Station to see the last night launch of the space shuttle. My husband asked if he and his wife wanted to ride along since we were going in the RV. They both said a definite YES and he asked if his folks could come along, too. Of course they could. We had known them for over 20 years, also.
So, Saturday afternoon, Feb. 6, we set off with 6 people in our RV designed for 2. We had a good time as we drove over as we are all good friends. We had reserved a spot in an RV park where we were going to sleep until time for the launch, but they suggested we go reconnoiter to see the lay of the land. We drove along US 1 and came to a boat ramp directly opposite the space shuttle launch pad. We could see the shuttle across the Indian River Lagoon. So, instead of going to the RV park, we back into a good spot and visited until about midnight. The launch was set to go up at 4:39 so I set an alarm for 3:15 and around midnight we tried to get some sleep. It was very, very cold that night and we were not really prepared for it so we huddled down as best we could.
When the alarm went off everyone went about making coffee and getting ready for the launch. Preparing cameras, etc. At 4:10 I walked out to the end of the pier to get a good place to watch from where I could sit down. When I saw the parking lot I was amazed; the cars were parked 4 and 5 deep with only a foot between any of them. Everyone was cheerful and having a good time. Some folks had brought lawn chairs and a cooler and were sitting out on another pier next to where I was. Excitement was high as we eagerly awaited the launch. I had never been to one; the other two times we had driven over, it had been scrubbed. Someone with a smart phone kept us up to date about whether or not the launch would go. At 4:29 he announced that the launch had been scrubbed, just ten minutes before go. Disappointed, we went back to the RV and waited for traffic to clear so we could get out. Everything was organized and there were no traffic problems. We decided to drive straight back and skip sleeping at the RV park. We were totally drained when we got back to Tampa around 11 AM on Sunday. No shuttle launch. It was a launch not.
The good part of this story is that the rolfing session enabled me to walk down to that pier without a cane. To move my legs freely for the first time in over a year. Now I am going to schedule an appointment once a month to keep from freezing up as much as I had. Thank God for rolfers!
So, Saturday afternoon, Feb. 6, we set off with 6 people in our RV designed for 2. We had a good time as we drove over as we are all good friends. We had reserved a spot in an RV park where we were going to sleep until time for the launch, but they suggested we go reconnoiter to see the lay of the land. We drove along US 1 and came to a boat ramp directly opposite the space shuttle launch pad. We could see the shuttle across the Indian River Lagoon. So, instead of going to the RV park, we back into a good spot and visited until about midnight. The launch was set to go up at 4:39 so I set an alarm for 3:15 and around midnight we tried to get some sleep. It was very, very cold that night and we were not really prepared for it so we huddled down as best we could.
When the alarm went off everyone went about making coffee and getting ready for the launch. Preparing cameras, etc. At 4:10 I walked out to the end of the pier to get a good place to watch from where I could sit down. When I saw the parking lot I was amazed; the cars were parked 4 and 5 deep with only a foot between any of them. Everyone was cheerful and having a good time. Some folks had brought lawn chairs and a cooler and were sitting out on another pier next to where I was. Excitement was high as we eagerly awaited the launch. I had never been to one; the other two times we had driven over, it had been scrubbed. Someone with a smart phone kept us up to date about whether or not the launch would go. At 4:29 he announced that the launch had been scrubbed, just ten minutes before go. Disappointed, we went back to the RV and waited for traffic to clear so we could get out. Everything was organized and there were no traffic problems. We decided to drive straight back and skip sleeping at the RV park. We were totally drained when we got back to Tampa around 11 AM on Sunday. No shuttle launch. It was a launch not.
The good part of this story is that the rolfing session enabled me to walk down to that pier without a cane. To move my legs freely for the first time in over a year. Now I am going to schedule an appointment once a month to keep from freezing up as much as I had. Thank God for rolfers!
Saturday, March 6, 2010
Shy Drager online support group mandala
This Mandala was created by Phyllis Wilcox, an active member of the Shy Drager Support Group.Bob Summers Hello, Susan and I would like to share an idea with all of you 883 Miracle Fans . Why don't we use the month of March each year as "Multi Systems Awareness Month". The first day of Spring falls during this month, a time of renewal or rebirth. It seems to be a fitting time of year to reflex and dream big about our role to promote awareness and raise money for the much needed research. There are Fans on this Miracle page from around the world. There is a saying, "little things make big things happen!" This is one positive thing that we can all do together. We could wear purple ribbons or something that is purple which will bring attention to OUR CAUSE!
I'm for anything that is purple. I found the following meaning for purple:
Purple is the color of good judgment. It is the color of people seeking spiritual fulfillment. It is said if you surround yourself with purple you will have peace of mind. Purple is a good color to use in meditation. Purple has been used to symbolize magic and mystery, as well as royalty. Being the combination of red and blue, the warmest and coolest colors, purple is believed to be the ideal color. Most children love the color purple. Purple is the color most favored by artists. Thursday's color is purple.
A flower that I think would be good is the Purple Passion flower. One reason is because it a complex flower that is almost alien and that's how MSA is complex and alien. There is more to this flower then you see. Much like MSA. It is a vine but it's tendril take hold and it won't dislodged. It has blotchy purple & white coloration of the coronal filaments . Which remains me of how the brain is becoming with the neurons being attacked. The flower is beautiful , but below it's surface it is poisonous. Which is how the patient are, they look fine on the outside but the inside is poisoned by MSA.
I had one of these growing on the side of my house. I had to take it out because it was taken over everything much like MSA does
The Yahoo Groups MSA Shy Drager group ended up choosing the Purple Passion Flower after much discussion. One of the members, Phyllis Wilcox, co-compiler of this booklet, designed a mandala of the flower. Here is a description of the mandala in Phillis’ words:
Mandalas are used by many cultures to represent the passage of time as cyclical. Examples are that day follows night follows day as the planet turns, and the four seasons repeat as the Earth orbits. The center of the mandala can represent the beginning of life or the heart-center of each person's spiritual body. Most all life begins with a seed and grows outward from that tiny beginning. Thoughts start as a spark of insight and grow from there and feelings blossom and grow.
In the MSA Passion Flower Mandala art the twelve large purple spikes are the numbers in a clock. The teal triangles are the hours in a day. The white circle is the endless cycle of year following year and the points along the circle are the months. The middle is birth and the turquoise and purple border could be seen as the end of life. All of the shapes and colors in the artwork were taken from the petals of the flower and of course, altered. I used Corel Paintshop Pro to create this art. I really liked the idea someone suggested that it be called a "Compassion Flower.
Ribbons are available from the following source: when you go to the website you go directly to the ribbon chosen.
MSA Awareness magnetic ribbon for automobiles:
http://www.supportourribbons.com/custom-ribbon-magnet/299726/MSA-AWARENESS
March is Multiple System Atrophy Awareness Month
March is Multiple System Atrophy Awareness Month
info@msaawareness.org
FOR IMMEDIATE RELEASE Contact: Pam Bower
info@msaawareness.org
“Miracles For MSA” Proclaims March
as Multiple System Atrophy Awareness Month
(FACEBOOK, WORLDWIDE – March 3, 2010) – There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.
Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson’s Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy, or MSA, affects multiple systems of the body. It’s a disease that’s hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.
“Miracles For MSA,” a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler’s Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness was sparked by Bryant’s former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers’ wife suffers from MSA.
“MSA is so rare that many cases are wrongly diagnosed as Parkinson’s or some other similar disease,” said Pam Bower , an active member of the Facebook page, who’s mother-in-law was afflicted with MSA. “My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds.”
Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.
Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.
According to the National Institutes of Health, “Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.”
The group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website,www.msaawareness.org, will be live mid- to late-March.
For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet at http://www.ninds.nih.gov/disorders/msa/detail_msa.htm.
To join the “Miracles for MSA” Facebook page, visit http://www.facebook.com/pages/Miracles-for-MSA/138909258573.
“Miracles for MSA” is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts. The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.
info@msaawareness.org
FOR IMMEDIATE RELEASE Contact: Pam Bower
info@msaawareness.org
“Miracles For MSA” Proclaims March
as Multiple System Atrophy Awareness Month
(FACEBOOK, WORLDWIDE – March 3, 2010) – There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.
Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson’s Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy, or MSA, affects multiple systems of the body. It’s a disease that’s hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.
“Miracles For MSA,” a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler’s Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness was sparked by Bryant’s former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers’ wife suffers from MSA.
“MSA is so rare that many cases are wrongly diagnosed as Parkinson’s or some other similar disease,” said Pam Bower , an active member of the Facebook page, who’s mother-in-law was afflicted with MSA. “My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds.”
Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.
Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.
According to the National Institutes of Health, “Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.”
The group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website,www.msaawareness.org, will be live mid- to late-March.
For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet at http://www.ninds.nih.gov/disorders/msa/detail_msa.htm.
To join the “Miracles for MSA” Facebook page, visit http://www.facebook.com/pages/Miracles-for-MSA/138909258573.
“Miracles for MSA” is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts. The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.
From a concerned caregiver
I had a most amazing conversation with a man who took time to help me as his wife was dying of MSA. His concern that I get evaluated at the Mayo Clinic in Jacksonville is obvious from his message. He could not save his wife but he hoped to help prolong the life and ease the suffering of another woman who has the same name as his wife. I hope you find this as uplifting as I do. The exchange still brings tears to my eyes.
On Thu, Mar 4, 2010 at 2:24 PM
Dear Mary
My wife has MSA, and we simply for a number of years believed she only had orthostatic hypotension, together with symptoms of post prandial hypotension, since she often fainted and fell after eating. Later other symptoms became evident, and she had a bad fall in October of 2008, after which her level of energy decreased, together with walking problems, drooling at the mouth etc. MSA, as the name implies ( multiple system atrophy ) displays itself in many ways which can be different with each person.
I would recommend that you go to the Mayo Clinic near Tampa, and ask to be seen by Dr. Low. He has done some excellent work in studying MSA and I believe that he would be able to help you understand your illness, if it is indeed MSA.
Date: Friday, March 5, 2010, 2:51 PM
Thank you for the advice. There is no Mayo clinic in Tampa. I went to USF College of Medicine Neurology Dept. and saw an inept neuro. Had already been to another one prior to them. Finally found someone who knew about movement disorders and specializes in MSA, etc. I am friends with the former Chair of the Dept of Neuro at the Neurology Dept and spoke with him about the doctor and resident I had seen there. Gave him my symptoms, my MRIs, etc. and he was furious and the next week went in and held a special conference for all the neuros about MSA and movement disorders. I trust my neuro knows what she is talking about and all my symptoms are following a typical course for this atypical disease. My face has recently started showing the "mask" and I have an almost permanent straight look from my mouth, smiling is very difficult and I am someone who has always smiled and laughed, now have "frown" lines instead of laugh lines. Had there been a Mayo Clinic in driving distance for me, I would have gone. My case is just complicated by my kidney disease, RA, Sjongrens, and a few other misc. problems. Mary (Mershanti) in Tampa
On Fri, Mar 5, 2010 at 3:49 PM
Mary: it is in Florida, maybe Jacksonville. Look it up on the internet. My wife is dying, so I can't help you further just now.
Date: Friday, March 5, 2010, 4:33 PM
I am so sorry about your wife. Yes, there is one in Jacksonville, but that is a 4-5 hour trip from Tampa. Please accept my deepest condolences on your wife's condition. This is a horrible disease. Mary (Mershanti) in Tampa
On Fri, Mar 5, 2010 at 8:13 PM
Mary: since my last email, my wife died at 5 pm. Thank you for your message of condolence. May I suggest that you phone the Mayo Clinic in Jacksonville, and see if you can speak with Dr. Low. He can give you the latest on treatment of MSA, actually on rats with success( rifampicin, resagiline ), and perhaps make a trip of five hours from Tampa to Jacksonville worthwhile. Good luck.
On Fri, Mar 5, 2010 at 8:30 PM
Oh, I am so sorry. Being the one with the disease, I have to feel she is free now - free from pain and this illness. I am certain you were a caring and supportive caregiver to her. My heart goes out to you. I will discuss with my PCP and my husband about the Mayo trip. I am scheduled on regular other doc visits and freeing up the time is difficult - but I will certainly give your suggestion serious thought. Thank you for caring enough to get in touch with me at this most difficult time for you. Mary (Mershanti) in Tampa
On Thu, Mar 4, 2010 at 2:24 PM
Dear Mary
My wife has MSA, and we simply for a number of years believed she only had orthostatic hypotension, together with symptoms of post prandial hypotension, since she often fainted and fell after eating. Later other symptoms became evident, and she had a bad fall in October of 2008, after which her level of energy decreased, together with walking problems, drooling at the mouth etc. MSA, as the name implies ( multiple system atrophy ) displays itself in many ways which can be different with each person.
I would recommend that you go to the Mayo Clinic near Tampa, and ask to be seen by Dr. Low. He has done some excellent work in studying MSA and I believe that he would be able to help you understand your illness, if it is indeed MSA.
Date: Friday, March 5, 2010, 2:51 PM
Thank you for the advice. There is no Mayo clinic in Tampa. I went to USF College of Medicine Neurology Dept. and saw an inept neuro. Had already been to another one prior to them. Finally found someone who knew about movement disorders and specializes in MSA, etc. I am friends with the former Chair of the Dept of Neuro at the Neurology Dept and spoke with him about the doctor and resident I had seen there. Gave him my symptoms, my MRIs, etc. and he was furious and the next week went in and held a special conference for all the neuros about MSA and movement disorders. I trust my neuro knows what she is talking about and all my symptoms are following a typical course for this atypical disease. My face has recently started showing the "mask" and I have an almost permanent straight look from my mouth, smiling is very difficult and I am someone who has always smiled and laughed, now have "frown" lines instead of laugh lines. Had there been a Mayo Clinic in driving distance for me, I would have gone. My case is just complicated by my kidney disease, RA, Sjongrens, and a few other misc. problems. Mary (Mershanti) in Tampa
On Fri, Mar 5, 2010 at 3:49 PM
Mary: it is in Florida, maybe Jacksonville. Look it up on the internet. My wife is dying, so I can't help you further just now.
Date: Friday, March 5, 2010, 4:33 PM
I am so sorry about your wife. Yes, there is one in Jacksonville, but that is a 4-5 hour trip from Tampa. Please accept my deepest condolences on your wife's condition. This is a horrible disease. Mary (Mershanti) in Tampa
On Fri, Mar 5, 2010 at 8:13 PM
Mary: since my last email, my wife died at 5 pm. Thank you for your message of condolence. May I suggest that you phone the Mayo Clinic in Jacksonville, and see if you can speak with Dr. Low. He can give you the latest on treatment of MSA, actually on rats with success( rifampicin, resagiline ), and perhaps make a trip of five hours from Tampa to Jacksonville worthwhile. Good luck.
On Fri, Mar 5, 2010 at 8:30 PM
Oh, I am so sorry. Being the one with the disease, I have to feel she is free now - free from pain and this illness. I am certain you were a caring and supportive caregiver to her. My heart goes out to you. I will discuss with my PCP and my husband about the Mayo trip. I am scheduled on regular other doc visits and freeing up the time is difficult - but I will certainly give your suggestion serious thought. Thank you for caring enough to get in touch with me at this most difficult time for you. Mary (Mershanti) in Tampa
Monday, February 8, 2010
A NEW FRIEND
On Monday, January 25, a change took place in our household. We rescued a 1 year old adult male cat who had been declawed and neutered, of course. His mother had lost her job and could no longer afford to keep him. He spent several weeks in a cage, waiting for someone to take him to a forever home. When we first met him, I was concerned as he seemed to not want much contact, and he was BIG. I had never had such a large cat. I guess I have always had petite females. However, he is magnificent looking. A striking tiger cat, not mackerel but actual stripes like a tiger, only all in a silver gray with darker gray stripes with light tan underbelly and inside his back legs. He is very athletic, agile, and fast; necessarily forcing me to watch where he might be next before I fall over him. He particularly prefers to lie down directly behind me in the kitchen.
His name was Frankie but he is too self-assured and confident to have such a name so we named him Ki, pronounced like key which is a Japanese word for the heart of strength and energy. He is lovable and gradually learning to trust us. He went through a traumatic event in his life, being abandoned and caged after having a home with a dog for a companion. He is alone with us now and we will see how he adjusts to solitary status. Of course, he is the king of the house and made sure he claimed every inch of his territory.
It is amazing how much difference a simple thing like a cat can change your mood from depression to pleasure. We had missed our Tiki, and now we have Ki. Sometimes I find myself calling him Kiki and have to rein myself back in. He adjusted to his new name with no complaint.
I went to the grocery today for some catfood for him and he was so excited when he heard the bags come in. He pranced around the kitchen inspecting every bag and immediately homed in on the catfood bags. I poured some into his bowl and he dove right in. Earlier, I had a yogurt for lunch and when he heard the lid of the yogurt lift up, there he was waiting. He ate 3 teaspoons and then went under his couch for a nap.
What a joy it is to have a warm, fuzzy back in the house. No, he isn?t Tiki and can never take her place, but he is totally himself and has already wormed his way into our hearts. As he has gradually learned to trust us our bond has grown deeper. We think he was not allowed on the beds or the furniture as he has turned down our invitations to come up. In time, he has learned that we welcome his body snuggled next to ours. Welcome home, Ki.
Although he came to us with no manners, he is eager to please and has caught on quite quickly that he is not welcome on our food tables and respectfully removes himself to the hallway until we are finished. His idea, not ours.
His name was Frankie but he is too self-assured and confident to have such a name so we named him Ki, pronounced like key which is a Japanese word for the heart of strength and energy. He is lovable and gradually learning to trust us. He went through a traumatic event in his life, being abandoned and caged after having a home with a dog for a companion. He is alone with us now and we will see how he adjusts to solitary status. Of course, he is the king of the house and made sure he claimed every inch of his territory.
It is amazing how much difference a simple thing like a cat can change your mood from depression to pleasure. We had missed our Tiki, and now we have Ki. Sometimes I find myself calling him Kiki and have to rein myself back in. He adjusted to his new name with no complaint.
I went to the grocery today for some catfood for him and he was so excited when he heard the bags come in. He pranced around the kitchen inspecting every bag and immediately homed in on the catfood bags. I poured some into his bowl and he dove right in. Earlier, I had a yogurt for lunch and when he heard the lid of the yogurt lift up, there he was waiting. He ate 3 teaspoons and then went under his couch for a nap.
What a joy it is to have a warm, fuzzy back in the house. No, he isn?t Tiki and can never take her place, but he is totally himself and has already wormed his way into our hearts. As he has gradually learned to trust us our bond has grown deeper. We think he was not allowed on the beds or the furniture as he has turned down our invitations to come up. In time, he has learned that we welcome his body snuggled next to ours. Welcome home, Ki.
Although he came to us with no manners, he is eager to please and has caught on quite quickly that he is not welcome on our food tables and respectfully removes himself to the hallway until we are finished. His idea, not ours.
Monday, January 18, 2010
When MSA comes Calling, again
I was getting cocky. I had gone one and a half years, ever since I had finally found a neuro who diagnosed me and got me on various medications, including Florinef, Midodrine, Neurontin, and others. Oh, sure, I had fallen back onto couch when trying to get up and had stumbled but always caught myself until. Until Last night when I was sitting at the kitchen table reading a large print book resting on the table. The next thing I knew, I was going down. In a merger of slow and fast motion, my head hit the cabinet, my right elbow hit the table leg, my left arm hit the leg of the cabinet, and both knees were skinned and sore.
My husband came running to ask what had happened and all I could say was that I fell. Up until this point, he had not really grasped what MSA was and how it could suddenly make you fall flat on your face while sitting or standing. We had a good talk about it, then, and now he does understand.
MSA is a sneaky little devil. You can go along and think all is hunky-dory and the next thing you know you are flat on your ass. When I go back to my neuro next month I expect a change in meds.
In addition to the MSA factor, I also recently suffered the third bout of stomach virus in one and a half years. Yes, I had the flu shot, both of them. But I went 30 hours unable to keep any fluids in me. Even a tbs of water took the express route and out, bypassing my kidney. This is bad, for I also suffer from kidney disease and have only one kidney.
Last week, when I was talking with my therapist, I told him I was tired and just ready to give up (I am not always thinking of being positive, I am only human). He said he could totally understand. I was dealing with a lot of hard stuff and it is bound to get me down from time to time. It made me feel so much better. It is a struggle to always be up and positive; sometimes I just want some sympathy for how badly I feel.
So, I am back on track, sorta, waiting to see my neuro. If I keel over again I will call and go in early. It is a very unpleasant feeling to suddenly just fall over or out of a chair. I would rather not do it again.
My husband came running to ask what had happened and all I could say was that I fell. Up until this point, he had not really grasped what MSA was and how it could suddenly make you fall flat on your face while sitting or standing. We had a good talk about it, then, and now he does understand.
MSA is a sneaky little devil. You can go along and think all is hunky-dory and the next thing you know you are flat on your ass. When I go back to my neuro next month I expect a change in meds.
In addition to the MSA factor, I also recently suffered the third bout of stomach virus in one and a half years. Yes, I had the flu shot, both of them. But I went 30 hours unable to keep any fluids in me. Even a tbs of water took the express route and out, bypassing my kidney. This is bad, for I also suffer from kidney disease and have only one kidney.
Last week, when I was talking with my therapist, I told him I was tired and just ready to give up (I am not always thinking of being positive, I am only human). He said he could totally understand. I was dealing with a lot of hard stuff and it is bound to get me down from time to time. It made me feel so much better. It is a struggle to always be up and positive; sometimes I just want some sympathy for how badly I feel.
So, I am back on track, sorta, waiting to see my neuro. If I keel over again I will call and go in early. It is a very unpleasant feeling to suddenly just fall over or out of a chair. I would rather not do it again.
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