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Fatigue, Exercise and Therapy
What a week for teleconferences - MS Foundation and Shared Solutions both hosted two nights of talks accessible by phone, and they had similar themes. I’ve tried to condense my notes from all four evenings into something readable in case you missed these live chats. Please let me know if this is useful.
The first was the MS Foundation’s “Strategies to Improve Walking, Balance, Strength, and Flexibility”- the speaker was Herbert Karpatkin, PT, DSc, NCS, MSCS . Dr. Karpatkin is a highly regard expert on therapy for MS Patients.
He immediately acknowledged that MS fatigue is the most prevalent and limiting symptom and before treatment can begin, the source of the fatigue has to be determined.
Here was his list of tips to design an effective program -
1. Identify the type of fatigue . Is it primary fatigue? That is caused by the disease, such as the heat sensitivity so many of us experience, or the heavy all-encompassing lassitude where our bodies just won’t go.
The other type is secondary fatigue - this can come from poor sleep habits, nutritional deficits, lack of exercise, infections, depression and the side effect of many of our MS drugs. He stressed that it is the secondary fatigue that responds best to exercise and therapy.
2. Exercise in volume, just doing a few minutes a day or a few times a week is not enough. MS patients need to exercise every day. We need to set a goal of a total amount of exercise but it doesn’t have to be done in one grouping. Break apart the exercise into manageable bits and take frequent breaks when you feel fatigue coming on and then resume the exercise when you feel better. If the goal is to walk 20 minutes, it might require breaking the walk into smaller groups of 5 minutes and resting in between.
Exercise aggressively - with MS taking it slow and easy is not effective for our needs. Exercise for MS should be progressive at a reasonable pace - too much or too little exercise will not help. And often if the therapist writes in the insurance notes that the patient is not progressing, then the benefits will stop.
3. Exercise for MS needs a specific purpose - we need to identify the physical deficit and work specifically to correct that problem. The vague complaints of “I feel off balance” or “I can’t walk like I used to,” don’t make the basis of a good PT plan.
He gave the example for problems with walking, and how with PwMS (people with MS), it isn’t enough to just prescribe a walking program. Our problems could come from loss of flexibility, loss of strength, loss of sensation in our limbs, or decreased endurance. Each one of those causes would be treated differently in PT.
The other example was the question of bad balance. Balance problems can come from gait difficulties, vestibular issues, side effect of drugs, or lesions. Each of those causes would also be treated differently.
As much as I like my Tai Chi, and Dr. Karpatkin acknowledged that it is proven in studies to be good for overall balance, he said that Tai Chi is not sufficient to deal with specific balance problems. Again he offered a variety of examples of when balance might be off and talked about tailoring the PT specific to that problem.
4. Take breaks – too often we don’t want to let fatigue beat us, but we make a big mistake by trying to push through the fatigue. Dr. Karpatkin stressed that PwMS don’t gain anything by working through the fatigue and we should never exercise to the point of fatigue; we must stop and let our bodies recover before pushing on. But we can’t give up, either.
Dr. Karpatkin talked about foot drop and says it can be corrected. The problem is the muscles that work one way and the muscles for the other way other are not worked equally. It does no good to do toe lifts to stretch the muscles if we are not also doing the necessary moves to strengthen the opposing muscles. He also said we need to consciously focus on how we walk, making sure we strike the ground with our heels first and then our toes. He also suggested that we don’t do enough stretching – it should be done a minimum of 5 minutes a day, 7 days a week, to alter the foot drop problem.
Unlike other forms of physical therapy where a certain number of sessions will help a problem, Dr. Karpatkin said PT for PwMs is a lifelong commitment. He made the offer more than once to answer questions through his website and email, and to help us and our PTs (if they are not knowledgeable about working with MS), to develop individual exercise plans. He urged the listeners to contact him with any other questions, too.
His website is not flashy, but contains his contact information:
http://multiplesclerosisphysicaltherapy.com
CONTINUED in THE NEXT POST
The first was the MS Foundation’s “Strategies to Improve Walking, Balance, Strength, and Flexibility”- the speaker was Herbert Karpatkin, PT, DSc, NCS, MSCS . Dr. Karpatkin is a highly regard expert on therapy for MS Patients.
He immediately acknowledged that MS fatigue is the most prevalent and limiting symptom and before treatment can begin, the source of the fatigue has to be determined.
Here was his list of tips to design an effective program -
1. Identify the type of fatigue . Is it primary fatigue? That is caused by the disease, such as the heat sensitivity so many of us experience, or the heavy all-encompassing lassitude where our bodies just won’t go.
The other type is secondary fatigue - this can come from poor sleep habits, nutritional deficits, lack of exercise, infections, depression and the side effect of many of our MS drugs. He stressed that it is the secondary fatigue that responds best to exercise and therapy.
2. Exercise in volume, just doing a few minutes a day or a few times a week is not enough. MS patients need to exercise every day. We need to set a goal of a total amount of exercise but it doesn’t have to be done in one grouping. Break apart the exercise into manageable bits and take frequent breaks when you feel fatigue coming on and then resume the exercise when you feel better. If the goal is to walk 20 minutes, it might require breaking the walk into smaller groups of 5 minutes and resting in between.
Exercise aggressively - with MS taking it slow and easy is not effective for our needs. Exercise for MS should be progressive at a reasonable pace - too much or too little exercise will not help. And often if the therapist writes in the insurance notes that the patient is not progressing, then the benefits will stop.
3. Exercise for MS needs a specific purpose - we need to identify the physical deficit and work specifically to correct that problem. The vague complaints of “I feel off balance” or “I can’t walk like I used to,” don’t make the basis of a good PT plan.
He gave the example for problems with walking, and how with PwMS (people with MS), it isn’t enough to just prescribe a walking program. Our problems could come from loss of flexibility, loss of strength, loss of sensation in our limbs, or decreased endurance. Each one of those causes would be treated differently in PT.
The other example was the question of bad balance. Balance problems can come from gait difficulties, vestibular issues, side effect of drugs, or lesions. Each of those causes would also be treated differently.
As much as I like my Tai Chi, and Dr. Karpatkin acknowledged that it is proven in studies to be good for overall balance, he said that Tai Chi is not sufficient to deal with specific balance problems. Again he offered a variety of examples of when balance might be off and talked about tailoring the PT specific to that problem.
4. Take breaks – too often we don’t want to let fatigue beat us, but we make a big mistake by trying to push through the fatigue. Dr. Karpatkin stressed that PwMS don’t gain anything by working through the fatigue and we should never exercise to the point of fatigue; we must stop and let our bodies recover before pushing on. But we can’t give up, either.
Dr. Karpatkin talked about foot drop and says it can be corrected. The problem is the muscles that work one way and the muscles for the other way other are not worked equally. It does no good to do toe lifts to stretch the muscles if we are not also doing the necessary moves to strengthen the opposing muscles. He also said we need to consciously focus on how we walk, making sure we strike the ground with our heels first and then our toes. He also suggested that we don’t do enough stretching – it should be done a minimum of 5 minutes a day, 7 days a week, to alter the foot drop problem.
Unlike other forms of physical therapy where a certain number of sessions will help a problem, Dr. Karpatkin said PT for PwMs is a lifelong commitment. He made the offer more than once to answer questions through his website and email, and to help us and our PTs (if they are not knowledgeable about working with MS), to develop individual exercise plans. He urged the listeners to contact him with any other questions, too.
His website is not flashy, but contains his contact information:
http://multiplesclerosisphysicaltherapy.com
CONTINUED in THE NEXT POST
Exercise helps me. My fatigue which is new is completely running out of gas. I go riding, I come home I fall asleep right away and then get up later. I am usually tired the next day after physical or mental exertion.
Alex
Alex
I'm not sure what type of fatigue mine is. I can tell you it lessened after going off antidepressants. I still feel a bit blah, but not nearly as bad and out of touch as while taking the ADs.
This was such a timely topic for me. I decided to try PT to help with the fatigue and general conditioning. The initial evaluation is next week. I'm really hoping to see some improvement with this. I told her my goal is to get 4 hours of physical work in 5 days a week.
Thanks for posting!
This was such a timely topic for me. I decided to try PT to help with the fatigue and general conditioning. The initial evaluation is next week. I'm really hoping to see some improvement with this. I told her my goal is to get 4 hours of physical work in 5 days a week.
Thanks for posting!
Thank you so much for bumping this thread up... And for posting it in the first place. :) I want to see that PT!
Shell asked that I find this one and bump it up for the new foks who are having questions about fatigue. I hope this information helps - if I get the time later I will split the fatigue information into a new, separate post.
Thanks Lullu! I don't have a phone were i can listen in on these things. great to have you posted your notes. also to be able to hear the talk online too.
I have been bad about trying to work through fatigue and telling myself I'm being lazy when I just can't get up to get to work. I know I'm not lazy. I was working full time and a full time caregiver and this fatigue is so much different and more then that ever was. This has helped explain it and maybe what can help slowly with things. more then my doctors have done.
Raz
I have been bad about trying to work through fatigue and telling myself I'm being lazy when I just can't get up to get to work. I know I'm not lazy. I was working full time and a full time caregiver and this fatigue is so much different and more then that ever was. This has helped explain it and maybe what can help slowly with things. more then my doctors have done.
Raz
Thank you for this, Lu.
Education and awareness we hear, read,or are fortunate enough to physically experience that helps us understand better what we are dealing with arms us for the battle!
I can't thank you enough for the thorough synopsis you provide us because I did not get to tune in to it either.
And, though we individually deal w/varying levels of capability, thank god for those doctors and therapists who put themselves out there everyday for OUR long haul. Where would we be without them.
-Shell
Education and awareness we hear, read,or are fortunate enough to physically experience that helps us understand better what we are dealing with arms us for the battle!
I can't thank you enough for the thorough synopsis you provide us because I did not get to tune in to it either.
And, though we individually deal w/varying levels of capability, thank god for those doctors and therapists who put themselves out there everyday for OUR long haul. Where would we be without them.
-Shell
Thank you so much for the link Lu. I missed the teleconferences and was disappointed.
It's just that darn lassitude that gets me every time. Nothing really to do about it except wait it out. Sometimes it can be a long wait..... :-0
It's just that darn lassitude that gets me every time. Nothing really to do about it except wait it out. Sometimes it can be a long wait..... :-0
Dr. Karpatkin's talk is now up - the first evening of the two presentations. The second night will be posted soon.
You can access it through the MSF website
http://www.msfocus.org/mobility-accessibility.aspx
scroll down the page and you will see AUDIOS toward the bottom. His presentation is titled Strategies to improve walking...........
You can access it through the MSF website
http://www.msfocus.org/mobility-accessibility.aspx
scroll down the page and you will see AUDIOS toward the bottom. His presentation is titled Strategies to improve walking...........
Thank you..I will be looking the recorded version of the teleconference when it is posted on the MS Foundation website!!! I go to yoga 5 to 6 days a week and it has helped me so much!! I will be looking forward to hear Dr. Karpatkins approach. I really believe maintaining a positive attitude Is so important !!
My MSologist is a well respected, nationally and internationally known for his work in MS. He is a neurologist and a medical doctor. He is also a very wise young man and knows when things are out of his area of expertise. That is why he refers his patients to physical therapists, who are schooled specifically in ways the body can respond to PT.
He also does referrals to Urologists, Psychiatrists, Social Workers, etc. That is why eveyrone talks about assembling a medical team - the neurologists can't do it all on their own. They don't have the expertise to do so.
Dr. Karpatkin is also well respected, is known all over the country in the PT circles as one of, if not the #1 PT expert in dealing with MS patients. The head of our PT program, who is also a PT DR who specializes in neurological PT, especially for MS and Parkinsons, immediately recognized the name and said he has met Herb and heard him speak and that he is genuinely one of the good guys.
His credentials and his body of work are obviously sufficient for the MS Foundation to use him as an expert for this presentation. I have no doubts that he is qualified to speak on the topic of PT for MS patients.
He also does referrals to Urologists, Psychiatrists, Social Workers, etc. That is why eveyrone talks about assembling a medical team - the neurologists can't do it all on their own. They don't have the expertise to do so.
Dr. Karpatkin is also well respected, is known all over the country in the PT circles as one of, if not the #1 PT expert in dealing with MS patients. The head of our PT program, who is also a PT DR who specializes in neurological PT, especially for MS and Parkinsons, immediately recognized the name and said he has met Herb and heard him speak and that he is genuinely one of the good guys.
His credentials and his body of work are obviously sufficient for the MS Foundation to use him as an expert for this presentation. I have no doubts that he is qualified to speak on the topic of PT for MS patients.
I deal with both neuromuscular fatigue and lassitude. I practice Yoga at home, lift 1 kg dumbells a few reps at a time for various muscle groups, and when the weather cooperates, I can still ride my bike.
I have no problem taking rests when my body demands. I'm so determined to keep going, but that ol' Lassitude Blues (now, THERE'S a song...) is sooo hard to deal with. Luckily for me, it's been more or less predictable in that it's hit me between 2 -3 o'clock in the afternoon, and I perk up at about 7. I still sleep 8-10 hrs a night, except when muscle spasms jolt me right out of bed (1-4 times a night).
I can see why no meds have been approved for lassitude. I tried Nuvigil this week, and when it kicks in, I feel like I've had about 6 cups of coffee! The mid-afternoon slump is occasionally averted, but just as often, I hit the brick wall of lassitude. Zombie!
So I just keep on keepin' on...
I have no problem taking rests when my body demands. I'm so determined to keep going, but that ol' Lassitude Blues (now, THERE'S a song...) is sooo hard to deal with. Luckily for me, it's been more or less predictable in that it's hit me between 2 -3 o'clock in the afternoon, and I perk up at about 7. I still sleep 8-10 hrs a night, except when muscle spasms jolt me right out of bed (1-4 times a night).
I can see why no meds have been approved for lassitude. I tried Nuvigil this week, and when it kicks in, I feel like I've had about 6 cups of coffee! The mid-afternoon slump is occasionally averted, but just as often, I hit the brick wall of lassitude. Zombie!
So I just keep on keepin' on...
COMMUNITY LEADER
Thanks for clarrifying, it has to be lassitude = what I call type 2 fatigue. Yep house on fire, not going to happen, I have to conciously and with effort, close my mouth to stop drooling lol I hate hate hate this crap!
I maybe doing it right after all, its a battle that does my head in with frustration!
Cheers.............JJ
(Still not smoking)
I maybe doing it right after all, its a battle that does my head in with frustration!
Cheers.............JJ
(Still not smoking)
Yes, Dr. Karpatkin is a doctorate level physical therapist with speciality training in MS as was stated in the original post. He has treated many patients successfully and is certainly qualified to have an expert opinion.
I enjoyed the teleconference presentation, learned a lot and stopped by here to share a bit of what struck me most. Anyone wanting to listen to a recorded version of the teleconference can do so when it is posted on the MS Foundation website. That would be the best place to get a real feel for the type of exercise activity Dr. Karpatkin recommends (it's not body building gym work). For those not inspired to find out more, that's ok too.
No need to explain or defend yourself. Excuse me for stating the obvious. It isn't clear to me what is so disturbing here.
Mary
I enjoyed the teleconference presentation, learned a lot and stopped by here to share a bit of what struck me most. Anyone wanting to listen to a recorded version of the teleconference can do so when it is posted on the MS Foundation website. That would be the best place to get a real feel for the type of exercise activity Dr. Karpatkin recommends (it's not body building gym work). For those not inspired to find out more, that's ok too.
No need to explain or defend yourself. Excuse me for stating the obvious. It isn't clear to me what is so disturbing here.
Mary
Here is a short easy to read article from the American Journal of Neuroradiology that talks about the level of disability in those with spinal cord lesions and my guess would be the heavier the load the more likely the disability. If I had the time or patience, I could find many studies to back this theory up. I don't so I leave it to you.
Again, we have too many professionals (PT's, PCP, Internists, etc.) that see MS as only a disease of the brain and naturally assume we all should be responding like **** and Sue. Well, we ain't all **** and Sue. These professionals need training before taking on an MS patient. Why? Because they can do so much damage not only physically but emotionally. I have had both types. Today I can look those kind of doctors in the eye and question them on their knowledge. Most have no clue.
Again, we have too many professionals (PT's, PCP, Internists, etc.) that see MS as only a disease of the brain and naturally assume we all should be responding like **** and Sue. Well, we ain't all **** and Sue. These professionals need training before taking on an MS patient. Why? Because they can do so much damage not only physically but emotionally. I have had both types. Today I can look those kind of doctors in the eye and question them on their knowledge. Most have no clue.
Dr. Karpatkin is not a neurologist but holds a PhD in PT. Of course you can exercise from a wheelchair. You can also transfer from a wheelchair to a recumbent bike or other equipment. Sometimes those pieces of equipment have to be tailored to the patient...many of the things I use have been.
I only read what was said here. I haven't seen the entire thing. However, reading the above makes him sound like a guru that has all the answers and that he is capable with his method to get us all up walking. Now with more information it makes sense.
And by the by, I do still walk with the help of a walker. However, there are days I am only able to use the scooter or motorized chair. On those days I still get on my equipment and exercise. It doesn't take a brain surgeon to know lack of movement only brings more pain.
You can't possibly believe that there are people out there working their buns off yet lose nerves that can't be repaired nor can they find a new path that will fix it....This is especially true of those with a heavy load of spinal lesions.
I only read what was said here. I haven't seen the entire thing. However, reading the above makes him sound like a guru that has all the answers and that he is capable with his method to get us all up walking. Now with more information it makes sense.
And by the by, I do still walk with the help of a walker. However, there are days I am only able to use the scooter or motorized chair. On those days I still get on my equipment and exercise. It doesn't take a brain surgeon to know lack of movement only brings more pain.
You can't possibly believe that there are people out there working their buns off yet lose nerves that can't be repaired nor can they find a new path that will fix it....This is especially true of those with a heavy load of spinal lesions.
JJ - the fatigue you describe is what Dr. Ward talked about as lassitude. If your house is on fire, you would have a debate as to whether you could actually move off the couch. That type of fatigue is one you have to wait out. That is a fatigue you can't bully yourself through - and both doctors talked about having to stop with that until it passes.
The other 4 types she describes are the fatigue that both doctors talk about adapting ways to overcome. They were clear about the different types of fatigue and what each one does to us - I hope I didn't gloss over that in my notes. And they both were emphatic that we must start slow. If we try too hard, we just make our fatigue worse, we feel defeated and then give up. Dr. Ward said she literally will start some patients with 2 minutes of exercise a day and add one minute more each week.
Both also stressed that when we feel the fatigue starting to revisit us we MUST stop immediately and allow our bodies to rest. And then resume the exercise when our systems have recovered.
best, L
The other 4 types she describes are the fatigue that both doctors talk about adapting ways to overcome. They were clear about the different types of fatigue and what each one does to us - I hope I didn't gloss over that in my notes. And they both were emphatic that we must start slow. If we try too hard, we just make our fatigue worse, we feel defeated and then give up. Dr. Ward said she literally will start some patients with 2 minutes of exercise a day and add one minute more each week.
Both also stressed that when we feel the fatigue starting to revisit us we MUST stop immediately and allow our bodies to rest. And then resume the exercise when our systems have recovered.
best, L
COMMUNITY LEADER
Thanks for doing that, its always greatly appreciated!
I dont know if i'm doing it right or wrong, but from my perspective fatigue is the only thing that stops me from activity, exercising and sometimes even stretching. When its here I just have to bide my time, ride it out and once it starts to lift, i can start to 'do' until then a trip to the loo is energy wasted, even thinking is energy wasted lol.
I really feel there are different types of fatigue, One type of fatigue you experience from doing more than your body can reasonable cope with, heat, depression, attitude, drugs etc. all play a role but this type of fatigue can be altered by changing internal or exteral factors. The second type of fatigue has nothing to do with you, nothing you do or not do will change its course. It hits you 'baby big time', coming and going when it does and you cant do anything about it, it is just here!
I sort of get miffed at the theory of how to combat fatigue, the suggestion is that If you do more it will be different or better for you and thats not totally true. Type 1 yes but type 2, i do more and i am worse. To suggest i'm not doing enough physically when i'm in fatigue type 2, just frustrates me even more. If I could I would, and there is absolutely nothing I can do about it. The should, would, could and want, doesnt make a damb difference to the reality of type 2 fatigue.
Fatigue type 2 for me is constantly fighting gravity, energy is spent doing the basics, like sitting, talking, standing etc lol making a cup of coffee is a work out, well my body reacts like one! As soon as it lifts i can go back to keeping stretched, healthy and active but when type 2 fatigue is here, all i can 'do' is sleep and ride it out. Being told to keep moving or do more exercise, just doesn't sound like there is complete understanding of what fatigue can really be like or just how bad it can get.
I'm a move it or loose it thinker, got enough endorphins to happy a small nation, i sleep 2-3 hours for ever 3-4 hours of being awake, muscles will spasm or stick, stuck muscles hurt and dont not hurt unless i rest it, use it and it just hurts even more and from doing less. Fatigue type 2 is not something i can push my body through, it is in total control and i bide my time until it lifts.
Maybe i am doing it wrong but I cant seem to do anything more than I am, which isn't much at all.
Cheers.......JJ
I dont know if i'm doing it right or wrong, but from my perspective fatigue is the only thing that stops me from activity, exercising and sometimes even stretching. When its here I just have to bide my time, ride it out and once it starts to lift, i can start to 'do' until then a trip to the loo is energy wasted, even thinking is energy wasted lol.
I really feel there are different types of fatigue, One type of fatigue you experience from doing more than your body can reasonable cope with, heat, depression, attitude, drugs etc. all play a role but this type of fatigue can be altered by changing internal or exteral factors. The second type of fatigue has nothing to do with you, nothing you do or not do will change its course. It hits you 'baby big time', coming and going when it does and you cant do anything about it, it is just here!
I sort of get miffed at the theory of how to combat fatigue, the suggestion is that If you do more it will be different or better for you and thats not totally true. Type 1 yes but type 2, i do more and i am worse. To suggest i'm not doing enough physically when i'm in fatigue type 2, just frustrates me even more. If I could I would, and there is absolutely nothing I can do about it. The should, would, could and want, doesnt make a damb difference to the reality of type 2 fatigue.
Fatigue type 2 for me is constantly fighting gravity, energy is spent doing the basics, like sitting, talking, standing etc lol making a cup of coffee is a work out, well my body reacts like one! As soon as it lifts i can go back to keeping stretched, healthy and active but when type 2 fatigue is here, all i can 'do' is sleep and ride it out. Being told to keep moving or do more exercise, just doesn't sound like there is complete understanding of what fatigue can really be like or just how bad it can get.
I'm a move it or loose it thinker, got enough endorphins to happy a small nation, i sleep 2-3 hours for ever 3-4 hours of being awake, muscles will spasm or stick, stuck muscles hurt and dont not hurt unless i rest it, use it and it just hurts even more and from doing less. Fatigue type 2 is not something i can push my body through, it is in total control and i bide my time until it lifts.
Maybe i am doing it wrong but I cant seem to do anything more than I am, which isn't much at all.
Cheers.......JJ
Heaven forbid Sumana. Don't get sick over this. Nobody was laying blame anywhere, especially Dr. Karpatkin. The man exuded compassion. I hope you take the opportunity to hear him yourself when the recorded presentation is available. Besides, I wasn't quoting him, only sharing my impressions of what was said.
I admit I should have proofread more carefully. Let me add a most important word to the statement. Dr. Karpatkin was confident it is possible for SOME (again - SOME) PwMS to exercise out of a wheelchair. I think that is significant, even if it is for short excursions in the house. What's to lose in trying something that can deliver potential gain with very little risk?
It is certainly possible to exercise IN a wheelchair. That was the real point. Using a chair or scooter fosters joint and limb immobility even as it increases a person's ability to remain active in life. Chair ambulation means joints stay flexed for extended periods of time. That promotes spasticity and contractures unless there is a specific plan to stretch and move frequently during the day. It is as much about stretching muscles and tendons and ligaments as it is about strengthening. All bodies benefit from movement.
You haven't dampened my enthusiasm a bit. MS can try to take whatever it wants. It will most likely get plenty. I'm not giving anything away.
Mary
I admit I should have proofread more carefully. Let me add a most important word to the statement. Dr. Karpatkin was confident it is possible for SOME (again - SOME) PwMS to exercise out of a wheelchair. I think that is significant, even if it is for short excursions in the house. What's to lose in trying something that can deliver potential gain with very little risk?
It is certainly possible to exercise IN a wheelchair. That was the real point. Using a chair or scooter fosters joint and limb immobility even as it increases a person's ability to remain active in life. Chair ambulation means joints stay flexed for extended periods of time. That promotes spasticity and contractures unless there is a specific plan to stretch and move frequently during the day. It is as much about stretching muscles and tendons and ligaments as it is about strengthening. All bodies benefit from movement.
You haven't dampened my enthusiasm a bit. MS can try to take whatever it wants. It will most likely get plenty. I'm not giving anything away.
Mary
Take the PT doctor up on his offer to answer emails and questions and send him your questions and ask your therapist to communicate with him about plans that might be used for you. He repeated this offer several times and is sincere in his desire to help anyone and everyone.
His comments were not about blame, but about not just accepting that we are going to be immobile from this disease.
When they get his talk posted on the website I will be sure to post the link so you can listen to his examples and ideas.
His comments were not about blame, but about not just accepting that we are going to be immobile from this disease.
When they get his talk posted on the website I will be sure to post the link so you can listen to his examples and ideas.
I wouldn't be without my PT. I meet with her when I am ready to start something new or things she has suggest are not working. However, I warn that even with hard work (and I do work hard) you may find yourself still in that wheelchair or scooter. I am all about not blaming the patient but the disease. What exercise will do is strengten what is there. Keep you able to move longer. Give you a chance of not ending up in nursing care. I don't want to put a damper on things but MS takes what she wants. Keep positive. Keep moving. Keep trying. But DO NOT place blame on yourself or allow others to place that blame. It makes me physically ill to hear a so called professional telling MS patients that they can somehow overcome what MS wants to do......
Just my two cents...
Just my two cents...
Thanks for adding the additional comments, Mary.
Dr. Karpatkin gave examples of people in wheelchairs - I'm thinking he said about 25-30% of the people who come to see him are in chairs - who were able to regain mobility through long, dedicated work in doing the necessary exercises.
Both doctors talked about the need to work smart in exercise and both gave examples of starting with small amounts, even if it is just a few minutes, and slowly adding a minute or two at a time.
Dr. Karpatkin gave examples of people in wheelchairs - I'm thinking he said about 25-30% of the people who come to see him are in chairs - who were able to regain mobility through long, dedicated work in doing the necessary exercises.
Both doctors talked about the need to work smart in exercise and both gave examples of starting with small amounts, even if it is just a few minutes, and slowly adding a minute or two at a time.
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