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.
Thursday, March 25, 2010
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:
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
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