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.
Monday, May 31, 2010
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.
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