Re: Trying something new

[Guest guest]

I am not opposed to trying something new unless of course getting and paying for it becomes a big issue. My first reaction to trying other things whether they be herbs, new drugs, etc. is, are these altenatives not only making you feel better which is a BIG thing, and making us be able to move again, but it is suppose to be preventing further decay of our joints, cartalidge etc. Do all those other things disguise that while making us feel ok?

Just wondering?

From: <kwendt@...>Subject: Trying something newRheumatoid Arthritis Date: Monday, May 4, 2009, 9:30 AM

I feel for you re: your husband, children, etc.So true that if you could wear on the outside what's going on inside . . . other's including family, would "get" how hard it is.Just trying to imagine how many days I would have looked similar to "hellboy"? ugh . . . I've had RA, spondylitis fibro, etc. for several years and when I could no longer get out of my basement up the stairs . . . I went to emergency room. Were it not for that visit - who knows how long before I was diagnosed.I went through all the typical treatments methotrexate to Orencia and had "emergency room" reactions to the last biologic.The diseases took their toll on my physical, mental and a 24 year long marriage ended in divorce. I think even more than the pain was the depression. I discovered friends, other autoimmune folks are key to surviving this. You need to find resources like this group that you can vent and find compassion and understanding.I

finally found my way to a naturopath and am doing so much better. Taking a drug called naltrexone. It's FDA approved but not for autoimmune - it was given to alcohol and drug users to get them sober and clean. For those purposes it's given in high doses.For autoimmune it's given in low doses. I'm taking 3.5 mg every night. Have been on it for 3 months and the results are SO amazing. I don't know what the numbers are re: success rate. All I know is there has been no side effects (which is typical) and the benefits are a God send. I seem to be getting better every day. Yes I have days where I'm sore but the difference is I'm not crippled. I'm following the other changes necessary . . . diet, vitamins, minerals, (fish oil), etc. The naltexone works in conjunction with all of it. I'm sleeping every night (a miracle in itself). My depression has lifted without anti-depression medication. No pain meds except for an occasional ibuprofen. I would urge you

to talk to your MD about low dose naltrexone. Keep in mind that the pharmeceutical companies like your business . . . naltrexone is not a big money maker for them and as such, your docter may or may not want to discuss it (or may not know about it). Yourinsurance company may not cover it . . . I pay for it out of pocket because it's not that expensive. It's gaining in popularity and more and more physician's are learning of the good benefits for their patients. Sometimes we have to take control of our health and look around at other options.Thanks,

[Guest guest]

Do any one out there ever hurt on just one side of the from shoulder to toes when the weather change from good to bad. Even the muscles around my joints hurts. Are am I losing my mind from the pain.

From: <kwendt@...>Subject: Trying something newRheumatoid Arthritis Date: Monday, May 4, 2009, 8:30 AM

I feel for you re: your husband, children, etc.So true that if you could wear on the outside what's going on inside . . . other's including family, would "get" how hard it is.Just trying to imagine how many days I would have looked similar to "hellboy"? ugh . . . I've had RA, spondylitis fibro, etc. for several years and when I could no longer get out of my basement up the stairs . . . I went to emergency room. Were it not for that visit - who knows how long before I was diagnosed.I went through all the typical treatments methotrexate to Orencia and had "emergency room" reactions to the last biologic.The diseases took their toll on my physical, mental and a 24 year long marriage ended in divorce. I think even more than the pain was the depression. I discovered friends, other autoimmune folks are key to surviving this. You need to find resources like this group that you can vent and find compassion and understanding.I

finally found my way to a naturopath and am doing so much better. Taking a drug called naltrexone. It's FDA approved but not for autoimmune - it was given to alcohol and drug users to get them sober and clean. For those purposes it's given in high doses.For autoimmune it's given in low doses. I'm taking 3.5 mg every night. Have been on it for 3 months and the results are SO amazing. I don't know what the numbers are re: success rate. All I know is there has been no side effects (which is typical) and the benefits are a God send. I seem to be getting better every day. Yes I have days where I'm sore but the difference is I'm not crippled. I'm following the other changes necessary . . . diet, vitamins, minerals, (fish oil), etc. The naltexone works in conjunction with all of it. I'm sleeping every night (a miracle in itself). My depression has lifted without anti-depression medication. No pain meds except for an occasional ibuprofen. I would urge you

to talk to your MD about low dose naltrexone. Keep in mind that the pharmeceutical companies like your business . . . naltrexone is not a big money maker for them and as such, your docter may or may not want to discuss it (or may not know about it). Yourinsurance company may not cover it . . . I pay for it out of pocket because it's not that expensive. It's gaining in popularity and more and more physician's are learning of the good benefits for their patients. Sometimes we have to take control of our health and look around at other options.Thanks,

[Guest guest]

I do. My right side affects me more than the left. I also have more damage on the right side. 40% of RA patients have symmetrical symptons so not everyone hurts on both sides at the same time. My son, who is studying medicine, says the dominant side is usually affected first ot worse. I'm right handed so that is my dominant side.

Vicki

From: Etta Sterrett <ettasterrett@...>Rheumatoid Arthritis Sent: Monday, May 4, 2009 10:51:12 AMSubject: Re: Trying something new

Do any one out there ever hurt on just one side of the from shoulder to toes when the weather change from good to bad. Even the muscles around my joints hurts. Are am I losing my mind from the pain.

From: <kwendt (DOT) com>Subject: [rheumatoid_ arthritis] Trying something newrheumatoid_arthriti sgroups (DOT) comDate: Monday, May 4, 2009, 8:30 AM

I feel for you re: your husband, children, etc.So true that if you could wear on the outside what's going on inside . . . other's including family, would "get" how hard it is.Just trying to imagine how many days I would have looked similar to "hellboy"? ugh . . . I've had RA, spondylitis fibro, etc. for several years and when I could no longer get out of my basement up the stairs . . . I went to emergency room. Were it not for that visit - who knows how long before I was diagnosed.I went through all the typical treatments methotrexate to Orencia and had "emergency room" reactions to the last biologic.The diseases took their toll on my physical, mental and a 24 year long marriage ended in divorce. I think even more than the pain was the depression. I discovered friends, other autoimmune folks are key to surviving this. You need to find resources like this group that you can vent and find compassion and understanding.I

finally found my way to a naturopath and am doing so much better. Taking a drug called naltrexone. It's FDA approved but not for autoimmune - it was given to alcohol and drug users to get them sober and clean. For those purposes it's given in high doses.For autoimmune it's given in low doses. I'm taking 3.5 mg every night. Have been on it for 3 months and the results are SO amazing. I don't know what the numbers are re: success rate. All I know is there has been no side effects (which is typical) and the benefits are a God send. I seem to be getting better every day. Yes I have days where I'm sore but the difference is I'm not crippled. I'm following the other changes necessary . . . diet, vitamins, minerals, (fish oil), etc. The naltexone works in conjunction with all of it. I'm sleeping every night (a miracle in itself). My depression has lifted without anti-depression medication. No pain meds except for an occasional ibuprofen. I would urge you

to talk to your MD about low dose naltrexone. Keep in mind that the pharmeceutical companies like your business . . . naltrexone is not a big money maker for them and as such, your docter may or may not want to discuss it (or may not know about it). Yourinsurance company may not cover it . . . I pay for it out of pocket because it's not that expensive. It's gaining in popularity and more and more physician's are learning of the good benefits for their patients. Sometimes we have to take control of our health and look around at other options.Thanks,

[Guest guest]

I am right handed, but my left side is the side that hurt the most.

From: <kwendt (DOT) com>Subject: [rheumatoid_ arthritis] Trying something newrheumatoid_arthriti sgroups (DOT) comDate: Monday, May 4, 2009, 8:30 AM

I feel for you re: your husband, children, etc.So true that if you could wear on the outside what's going on inside . . . other's including family, would "get" how hard it is.Just trying to imagine how many days I would have looked similar to "hellboy"? ugh . . . I've had RA, spondylitis fibro, etc. for several years and when I could no longer get out of my basement up the stairs . . . I went to emergency room. Were it not for that visit - who knows how long before I was diagnosed.I went through all the typical treatments methotrexate to Orencia and had "emergency room" reactions to the last biologic.The diseases took their toll on my physical, mental and a 24 year long marriage ended in divorce. I think even more than the pain was the depression. I discovered friends, other autoimmune folks are key to surviving this. You need to find resources like this group that you can vent and find compassion and understanding.I

finally found my way to a naturopath and am doing so much better. Taking a drug called naltrexone. It's FDA approved but not for autoimmune - it was given to alcohol and drug users to get them sober and clean. For those purposes it's given in high doses.For autoimmune it's given in low doses. I'm taking 3.5 mg every night. Have been on it for 3 months and the results are SO amazing. I don't know what the numbers are re: success rate. All I know is there has been no side effects (which is typical) and the benefits are a God send. I seem to be getting better every day. Yes I have days where I'm sore but the difference is I'm not crippled. I'm following the other changes necessary . . . diet, vitamins, minerals, (fish oil), etc. The naltexone works in conjunction with all of it. I'm sleeping every night (a miracle in itself). My depression has lifted without anti-depression medication. No pain meds except for an occasional ibuprofen. I would urge you

to talk to your MD about low dose naltrexone. Keep in mind that the pharmeceutical companies like your business . . . naltrexone is not a big money maker for them and as such, your docter may or may not want to discuss it (or may not know about it). Yourinsurance company may not cover it . . . I pay for it out of pocket because it's not that expensive. It's gaining in popularity and more and more physician's are learning of the good benefits for their patients. Sometimes we have to take control of our health and look around at other options.Thanks,

[Guest guest]

That is something my husband and I were talking about. I am an aritist and wouldn't you know now that this is settling in and I know what all this is, here it comes in my right hand.

Been pretty consisitent in a bit of swelling and weakened,this does not make me happy as I need my hands. I can sit but I need to do my art and handwork. Only second day of meds not going to freak yet. Do ice packs really help the swelling for you all? And do your knees ever get to feeling like your old knees without the swelling and pain after you have been on a good steady med program.

Thanks,

From: <kwendt (DOT) com>Subject: [rheumatoid_ arthritis] Trying something newrheumatoid_arthriti sgroups (DOT) comDate: Monday, May 4, 2009, 8:30 AM

I feel for you re: your husband, children, etc.So true that if you could wear on the outside what's going on inside . . . other's including family, would "get" how hard it is.Just trying to imagine how many days I would have looked similar to "hellboy"? ugh . . . I've had RA, spondylitis fibro, etc. for several years and when I could no longer get out of my basement up the stairs . . . I went to emergency room. Were it not for that visit - who knows how long before I was diagnosed.I went through all the typical treatments methotrexate to Orencia and had "emergency room" reactions to the last biologic.The diseases took their toll on my physical, mental and a 24 year long marriage ended in divorce. I think even more than the pain was the depression. I discovered friends, other autoimmune folks are key to surviving this. You need to find resources like this group that you can vent and find compassion and understanding.I

finally found my way to a naturopath and am doing so much better. Taking a drug called naltrexone. It's FDA approved but not for autoimmune - it was given to alcohol and drug users to get them sober and clean. For those purposes it's given in high doses.For autoimmune it's given in low doses. I'm taking 3.5 mg every night. Have been on it for 3 months and the results are SO amazing. I don't know what the numbers are re: success rate. All I know is there has been no side effects (which is typical) and the benefits are a God send. I seem to be getting better every day. Yes I have days where I'm sore but the difference is I'm not crippled. I'm following the other changes necessary . . . diet, vitamins, minerals, (fish oil), etc. The naltexone works in conjunction with all of it. I'm sleeping every night (a miracle in itself). My depression has lifted without anti-depression medication. No pain meds except for an occasional ibuprofen. I would urge you

to talk to your MD about low dose naltrexone. Keep in mind that the pharmeceutical companies like your business . . . naltrexone is not a big money maker for them and as such, your docter may or may not want to discuss it (or may not know about it). Yourinsurance company may not cover it . . . I pay for it out of pocket because it's not that expensive. It's gaining in popularity and more and more physician's are learning of the good benefits for their patients. Sometimes we have to take control of our health and look around at other options.Thanks,

[Guest guest]

What kind of new things have you attempted to do? (without success)

I play the harmonica, because I have never had the skill to play any other

instrument. I tried the piano, and I always loved to play the songs by ear and

with one finger, but that's about it... The harmonica is great for CMT fingers,

though...

I don't try to do new things (physical), I am glad if I can cope with the old

ones. But I think that you get better and better by practicing. Like chopping

food, for example. I used to be horrible and slow, but regular cooking has made

me quite profficient.

Beata

________________________________

From: <agraham2k@...>

Sent: Wednesday, August 5, 2009 11:18:10 PM

Subject: Trying something new

 

Joan,

 

You play sax?  I play the flute, well used to...only pick it up once or twice a

year now, but your comments got me thinking...

 

You play the saxophone, which requires a wide grip, which may make it easier for

you to do the hand grip squeezer and the reason you're doing it so you don't

lose strength, which means you have strength to preserve.

 

This raised some questions in my mind and I welcome everyone's feedback.

 

Here are the questions:  For most of us, the nerve impulses to our limbs are

slowed or in some cases no longer even detectible. 

Is there perhaps some phenomenon at play when we repeat an activity we've done

all our lives, like muscle memory or less required nerve activity, that makes it

easier to continue doing that activity? 

Whereas, there' s not always enough nerve/muscle power there when we try

something new?

 

Kind of like an elderly person who can do things they've always done without

much thought but would be at high risk of injury if attempting a new activity.

 

For me, when I try something new, it's nearly impossible to do it more than once

or twice without suffering consequences in my body that cause me to stop. 

However, when I do some activity that I've always done, I don't experience the

same type of punishment.

 

I'm apparently 'an old dog who can't learn any new tricks'!  So I've concluded I

should just focus on trying to maintain what I can do and avoid risking injury

with new movement.

 

Does anyone else experience this phenomenon?

 

[Guest guest]

That says a lot. As my son begins with CMT the doctors have told us numerous

times and it also holds true for Non CMT people. If you don't use it, you

lose it! My father in law late 70's is a cyclist. He rides miles with no

issue because he has always done it. I am in my 40's and could not possibly

do what he does even now. So basically for my son if he doesn't run around

now while he still can he may not be able to in a couple years. If he just

keeps going doing as much as he can regardless of the CMT he will be able to

do those activities for a longer period of time. Make sense? Oh and just

took up the trombone.!

Lori

From: [mailto: ] On Behalf Of

Sent: Wednesday, August 05, 2009 5:18 PM

Subject: Trying something new

Joan,

You play sax? I play the flute, well used to...only pick it up once or

twice a year now, but your comments got me thinking...

You play the saxophone, which requires a wide grip, which may make it easier

for you to do the hand grip squeezer and the reason you're doing it so you

don't lose strength, which means you have strength to preserve.

This raised some questions in my mind and I welcome everyone's feedback.

Here are the questions: For most of us, the nerve impulses to our limbs are

slowed or in some cases no longer even detectible.

Is there perhaps some phenomenon at play when we repeat an activity we've

done all our lives, like muscle memory or less required nerve activity, that

makes it easier to continue doing that activity?

Whereas, there's not always enough nerve/muscle power there when we try

something new?

Kind of like an elderly person who can do things they've always done without

much thought but would be at high risk of injury if attempting a new

activity.

For me, when I try something new, it's nearly impossible to do it more than

once or twice without suffering consequences in my body that cause me to

stop. However, when I do some activity that I've always done, I don't

experience the same type of punishment.

I'm apparently 'an old dog who can't learn any new tricks'! So I've

concluded I should just focus on trying to maintain what I can do and avoid

risking injury with new movement.

Does anyone else experience this phenomenon?

[Guest guest]

, i not so sure about that because i use to walk like 6 miles a day, then

i walked at work(no longer walking the 6 miles) waitress. now the last month i

had to quit working because i can hardly walk at all. so for me as far as the

legs, i think it has made them worse. this has happened over 6 year period.

tina

cmt1a

michigan

From: agraham2k@...

Date: Wed, 5 Aug 2009 14:18:10 -0700

Subject: Trying something new

Joan,

You play sax? I play the flute, well used to...only pick it up once or twice a

year now, but your comments got me thinking...

You play the saxophone, which requires a wide grip, which may make it easier for

you to do the hand grip squeezer and the reason you're doing it so you don't

lose strength, which means you have strength to preserve.

This raised some questions in my mind and I welcome everyone's feedback.

Here are the questions: For most of us, the nerve impulses to our limbs are

slowed or in some cases no longer even detectible.

Is there perhaps some phenomenon at play when we repeat an activity we've done

all our lives, like muscle memory or less required nerve activity, that makes it

easier to continue doing that activity?

Whereas, there's not always enough nerve/muscle power there when we try

something new?

Kind of like an elderly person who can do things they've always done without

much thought but would be at high risk of injury if attempting a new activity.

For me, when I try something new, it's nearly impossible to do it more than once

or twice without suffering consequences in my body that cause me to stop.

However, when I do some activity that I've always done, I don't experience the

same type of punishment.

I'm apparently 'an old dog who can't learn any new tricks'! So I've concluded I

should just focus on trying to maintain what I can do and avoid risking injury

with new movement.

Does anyone else experience this phenomenon?

[Guest guest]

I agree that muscle memory is involved in lots of skills, but I just started

playing sax

four years ago. My son played in high school and there was this sax lying

around the

house. I always loved the sound of it and decided to take some lessons.

It's a little tricky with

less muscle mass in my hands, but I've managed to get to intermediate level.

Playing any instrument is a good way to maintain hand function and

coordination,

it seems to me, whether it's flute, drums, harmonica, etc. It's also a

great brain booster and

fun if you can find a community group to play with (I do.)

So I guess it depends on the old dog :-) Luckily, we don't have to play

with our feet :-0

Joan

On Wed, Aug 5, 2009 at 5:18 PM, <agraham2k@...> wrote:

>

>

> Joan,

>

> You play sax? I play the flute, well used to...only pick it up once or

> twice a year now, but your comments got me thinking...

>

> You play the saxophone, which requires a wide grip, which may make it

> easier for you to do the hand grip squeezer and the reason you're doing it

> so you don't lose strength, which means you have strength to preserve.

>

> This raised some questions in my mind and I welcome everyone's feedback.

>

> Here are the questions: For most of us, the nerve impulses to our limbs

> are slowed or in some cases no longer even detectible.

>

> Is there perhaps some phenomenon at play when we repeat an activity we've

> done all our lives, like muscle memory or less required nerve activity, that

> makes it easier to continue doing that activity?

>

> Whereas, there's not always enough nerve/muscle power there when we try

> something new?

>

> Kind of like an elderly person who can do things they've always done

> without much thought but would be at high risk of injury if attempting a new

> activity.

>

> For me, when I try something new, it's nearly impossible to do it more than

> once or twice without suffering consequences in my body that cause me to

> stop. However, when I do some activity that I've always done, I don't

> experience the same type of punishment.

>

> I'm apparently 'an old dog who can't learn any new tricks'! So I've

> concluded I should just focus on trying to maintain what I can do and avoid

> risking injury with new movement.

>

> Does anyone else experience this phenomenon?

>

>

>

>

[Guest guest]

Thank you to those who responded last week to my question about doing a new

exercise/activity.  Hopefully, researchers will figure out what type of

exercise/strength training is valuable and at what point in our lives.  For

example, if doing certain types of strength training or trying new activities at

a young age keeps a person going longer, that would be great to know.

 

Frequently, insurance companies will not pay for physical therapy unless they

believe it is “likely to result in significant improvementâ€.  If something

could be established medically, showing what types of movements are beneficial

at different ages, perhaps it could become part of a " best practices " treatment

plan and covered by insurance for those who would benefit from it.

 

Lori – Your comments were exactly what I was thinking.

 

Geoff – I agree with you.  Keep the music in your life.  I know there is

concern about overuse, but when it’s something you’ve always done and you

aren’t getting sore/feeling weakness AND it brings you emotional fulfillment,

then I’m all for it.  I linedanced for about 9 years in my 30’s, before I

knew I had CMT.  I wrapped my ankles in multiple types of bandages, wore

high-top laced boots, took handfuls of anti-inflammatories, ignored the pain,

and went out and had great time several times a week.   Once I learned about

CMT, I realized that pushing myself that far probably wasn’t a great idea. 

However, I’m not sure how much I would have changed, because my muscles in my

thighs did get a lot stronger and I lost weight.  Even more importantly, I got

such tremendous pleasure from doing it.  Sometimes quality of life trumps

longevity.

 

Tina – I agree there is nothing we can do, yet, to stop the muscles from

atrophying.  No amount of walking is going to make your atrophied muscles comes

back if the atrophy is caused by damaged nerves.  However, what I still wonder

is if we keep moving, doing a movement we’ve always done (like walking) each

day, will that keep us out of a wheelchair longer.  I’m talking about not

walking too much, not until we are fatigued or sore, but just continuing to

move.  The opposite of this would be not walking at all, which seems to me

would speed up atrophy.  I’m not recommending anything for you, just

wondering.  This is something I struggle with myself, trying to try to find the

right balance of movement, as my body continues to decline.    

 

Beata – you asked for an example of what I have tried with my hands but

can’t do with success.   I’ve tried stress balls, exercise grippers,

aquatic gloves, and even simple hand exercises where I moved my fingers

side-to-side in a certain sequence and other hand exercises.  All of these

things caused my fingers to ache and feel weaker.  What I find interesting,

however, is that I can still type, which I believe is because it’s something

I’ve done since I was young.  The muscle memory is there.  I can still chop

food too, although no one wants to be near me when I have a knife in my hand.

 It makes them too nervous to even watch, but, when I’m up to it, I do it,

because I think it keeps my fingers working.  When I stop doing it for awhile,

I seem to lose ability even faster.

 

Joan – it’s wonderful you have been successful at taking up the saxophone in

recent years.   That’s something that even those without CMT might find too

daunting.  So, congrats!

Trying something new

Joan,

You play sax? I play the flute, well used to...only pick it up once or twice

a year now, but your comments got me thinking...

You play the saxophone, which requires a wide grip, which may make it easier

for you to do the hand grip squeezer and the reason you're doing it so you

don't lose strength, which means you have strength to preserve.

This raised some questions in my mind and I welcome everyone's feedback.

Here are the questions: For most of us, the nerve impulses to our limbs are

slowed or in some cases no longer even detectible.

Is there perhaps some phenomenon at play when we repeat an activity we've

done all our lives, like muscle memory or less required nerve activity, that

makes it easier to continue doing that activity?

Whereas, there's not always enough nerve/muscle power there when we try

something new?

Kind of like an elderly person who can do things they've always done without

much thought but would be at high risk of injury if attempting a new

activity.

For me, when I try something new, it's nearly impossible to do it more than

once or twice without suffering consequences in my body that cause me to

stop. However, when I do some activity that I've always done, I don't

experience the same type of punishment.

I'm apparently 'an old dog who can't learn any new tricks'! So I've

concluded I should just focus on trying to maintain what I can do and avoid

risking injury with new movement.

Does anyone else experience this phenomenon?

[Guest guest]

I have played tuba for 35 years, and have recently gotten to the point where my

hands just don't do the fingerings, I get painful tendonitis in my arms, aka

tennis elbow, and shoulder strain from holding the horn up to play. For me,

there is no muscle memory, unless you maybe consider memory of what my muscles

used to do, but can't anymore.

Now I play the bass drum in my community band. I have to stand, but it is much

less strain.

O

[Guest guest]

Hi O,

 

Totally makes sense!  The tuba...that's amazing you played it for 35 years!

 

I hope I didn't confuse anyone.  I'm not trying to say that anything is a cure

or that there's any way to extends someone's ability indefinitely.

 

Just wondering if one's ability to do something lasts a little longer if the

muscle training is done early and/or we continue doing what our bodies can

safely do in later years, as opposed to not doing things.  I'm thinking there

might be incremental improvement for a limited period of time, that's all.

 

Just trying to figure out how to do things, like walk, longer.  Every little bit

helps.

 

[Guest guest]

O,

 

May I ask you a question, in a little different way:

 

Do you feel that there was benefit to you physically from playing the tuba for

35 years, i.e. core strength, breathing, or anything advantages like that?  Or,

was it not worth it, in terms of the toll it took on you physically?  Would you

do it again? 

 

Thank you,

[Guest guest]

,

I'm a late onset of CMT2, with gradual symptoms over the last 20 years. The

last 3-5 years have accelerated the symptoms to where what I did six months

ago I cannot do now. Playing a large brass instrument is just an example of

something I did for years that only recently I can no longer do.

I'm 6'9 " and have swam laps since the early '80s for exercise. Even in the

midst of the most dire (for me) bronchitis attacks, my lung capacity was off

the charts.

I wish that I'd started yoga at an earlier age. Otherwise I guess I did what

I did when I did it and have no regrets.

O

[Guest guest]

Insightful comments, ! And the subject is one we all deal with: how

to keep doing

something you love (or start doing something you'd like to learn) despite

having a neuromuscular

problem.

I think if the motivation and joy is there, we're willing to maybe do the

activity with a little less

power than the next guy/girl, but participate nonetheless. I don't think

any type of physical activity,

whether it's playing an instrument or paddling a kayak, is wasted.

Joan

On Mon, Aug 10, 2009 at 11:28 AM, <agraham2k@...> wrote:

>

>

> Thank you to those who responded last week to my question about doing a new

> exercise/activity. Hopefully, researchers will figure out what type of

> exercise/strength training is valuable and at what point in our lives. For

> example, if doing certain types of strength training or trying new

> activities at a young age keeps a person going longer, that would be great

> to know.

>

> Frequently, insurance companies will not pay for physical therapy unless

> they believe it is “likely to result in significant improvement”. If

> something could be established medically, showing what types of movements

> are beneficial at different ages, perhaps it could become part of a " best

> practices " treatment plan and covered by insurance for those who would

> benefit from it.

>

> Lori – Your comments were exactly what I was thinking.

>

> Geoff – I agree with you. Keep the music in your life. I know there is

> concern about overuse, but when it’s something you’ve always done and you

> aren’t getting sore/feeling weakness AND it brings you emotional

> fulfillment, then I’m all for it. I linedanced for about 9 years in my

> 30’s, before I knew I had CMT. I wrapped my ankles in multiple types of

> bandages, wore high-top laced boots, took handfuls of anti-inflammatories,

> ignored the pain, and went out and had great time several times a week.

> Once I learned about CMT, I realized that pushing myself that far probably

> wasn’t a great idea. However, I’m not sure how much I would have changed,

> because my muscles in my thighs did get a lot stronger and I lost weight.

> Even more importantly, I got such tremendous pleasure from doing it.

> Sometimes quality of life trumps longevity.

>

> Tina – I agree there is nothing we can do, yet, to stop the muscles from

> atrophying. No amount of walking is going to make your atrophied muscles

> comes back if the atrophy is caused by damaged nerves. However, what I

> still wonder is if we keep moving, doing a movement we’ve always done (like

> walking) each day, will that keep us out of a wheelchair longer. I’m

> talking about not walking too much, not until we are fatigued or sore, but

> just continuing to move. The opposite of this would be not walking at all,

> which seems to me would speed up atrophy. I’m not recommending anything for

> you, just wondering. This is something I struggle with myself, trying to

> try to find the right balance of movement, as my body continues to decline.

>

>

> Beata – you asked for an example of what I have tried with my hands but

> can’t do with success. I’ve tried stress balls, exercise grippers, aquatic

> gloves, and even simple hand exercises where I moved my fingers side-to-side

> in a certain sequence and other hand exercises. All of these things caused

> my fingers to ache and feel weaker. What I find interesting, however, is

> that I can still type, which I believe is because it’s something I’ve done

> since I was young. The muscle memory is there. I can still chop food too,

> although no one wants to be near me when I have a knife in my hand. It

> makes them too nervous to even watch, but, when I’m up to it, I do it,

> because I think it keeps my fingers working. When I stop doing it for

> awhile, I seem to lose ability even faster.

>

> Joan – it’s wonderful you have been successful at taking up the saxophone

> in recent years. That’s something that even those without CMT might find

> too daunting. So, congrats!

>

>

>

>

> Trying something new

>

> Joan,

>

> You play sax? I play the flute, well used to...only pick it up once or

> twice

> a year now, but your comments got me thinking...

>

> You play the saxophone, which requires a wide grip, which may make it

> easier

> for you to do the hand grip squeezer and the reason you're doing it so you

> don't lose strength, which means you have strength to preserve.

>

> This raised some questions in my mind and I welcome everyone's feedback.

>

> Here are the questions: For most of us, the nerve impulses to our limbs are

>

> slowed or in some cases no longer even detectible.

>

> Is there perhaps some phenomenon at play when we repeat an activity we've

> done all our lives, like muscle memory or less required nerve activity,

> that

> makes it easier to continue doing that activity?

>

> Whereas, there's not always enough nerve/muscle power there when we try

> something new?

>

> Kind of like an elderly person who can do things they've always done

> without

> much thought but would be at high risk of injury if attempting a new

> activity.

>

> For me, when I try something new, it's nearly impossible to do it more than

>

> once or twice without suffering consequences in my body that cause me to

> stop. However, when I do some activity that I've always done, I don't

> experience the same type of punishment.

>

> I'm apparently 'an old dog who can't learn any new tricks'! So I've

> concluded I should just focus on trying to maintain what I can do and avoid

>

> risking injury with new movement.

>

> Does anyone else experience this phenomenon?

>

>

>

>

[Guest guest]

Thank you, O.

 

All make sense.  And good idea about starting the yoga earlier, especially since

many seem to be able to do some form of it later in the disease with beneficial

results.  I've tried it in recent years with no success, but perhaps if I had

started when I was younger, then I could do it now in a modified way.

 

Yoga may be an example of what I was hypothesizing about, i.e. an activity

that would be beneficial for someone to start when they are younger, if they

can, and then modify as the body declines, since this is easier than trying to

begin after significant decline has already occurred.

 

Don't know for sure, just putting the idea out there.  If true, then perhaps

this concept can be incorporated into medical standard for treating younger CMT

patients.

 

Thank you,

 

From: Oltmann <joltman1@...>

Subject: Re: Trying something new

Date: Monday, August 10, 2009, 5:03 PM

 

,

I'm a late onset of CMT2, with gradual symptoms over the last 20 years. The

last 3-5 years have accelerated the symptoms to where what I did six months

ago I cannot do now. Playing a large brass instrument is just an example of

something I did for years that only recently I can no longer do.

I'm 6'9 " and have swam laps since the early '80s for exercise. Even in the

midst of the most dire (for me) bronchitis attacks, my lung capacity was off

the charts.

I wish that I'd started yoga at an earlier age. Otherwise I guess I did what

I did when I did it and have no regrets.

O

[Guest guest]

Hi ,

I am still catching up with old messages.

I was reading that when you try new things your body doesn't react well - in

what way? I find when I start new things I feel sore and tight, but with

regular stretching out and also repeating the new activity regularly it

becomes easier and more routine.

You mention building nerve memory - yes, this is true. One of the things my

swim training is doing is re-wiring me to do my stroke differently - and

more efficiently. It take a while to build a new neural memory. A long

while (like 8 weeks of constant practice for each change) but slowly I am

getting there.

Hope you are well. I asked my physio therapist for any research that they

have on how building muscle strength is possible and recommended. We had a

discussion on this topic, and apparently the original P Vinci study on

overuse of muscles has been disproven by another study and also is under

review by Shy and team. I will forward the names of the researchers

and studies when I get them.

Donna from London

www.myfitnessyear.com

[Guest guest]

Hi Donna,

You asked, " How does your body not react well when you exercise? The

answer: pain and fatigue. This is very different than the soreness and

tightness you describe.

When I was younger (like in my 30s), I was able to workout and had a

wonderful personal trainer. Occasionally, I would feel muscle soreness, but it

was usually mild and would peak about 1-2 days after the activity, then I would

grow stronger and be able to do the exercise the same or better at the next

workout. I didnt experience tightness very often since he would have me do

special stretches after each exercise. Muscle soreness of this kind is viewed

by many as a kind of €˜badge of honor, in that it is evidence of a

successful workout and progress.

Wow, how different things are for me now. Not sure if you saw the post I wrote

to Beata about the type of pain I experience. For you or others who did, I

apologize for any redundancy in this post.

Briefly, Ill summarize. Muscle soreness isn't my problem. (I wish I was

able to workout enough to experience that muscle soreness again.) The problem

is primarily nerve, tendon, and joint related. The joints (hips, knees, and

one ankle) swell, stiffen up, and are painful to move. I feel like the Tin

Man from Wizard of Oz. Where is my oil? The tendons are inflammed. For

example, I have iliopsoas tendonitis and bursitis in my hips. In addition,

the nerve pain is excruciating down the leg to the calf. I also get skin

soreness and overwhelming fatigue like I'm ill with the flu. The fatigue is a

huge issue, which weve discussed in other posts.

Total body pain and fatigue, being bedridden for days at a time, difficulty

bathing and getting dressed each day, these are just a few of the challenges I

face due to trying to move. Its difficult to adequately describe. Until

someone lives it and feels it, I dont think they can truly appreciate the

severity.

I know there are many out there who have similar experiences. On the other

hand, there are also many who are still able to exercise and build muscle. For

the majority who are still able to improve, I think the research you and your

doctors are doing is wonderful and will definitely make a difference in the

lives of others.

Please keep sharing what you learn. Thank you!

From: Donna deWick <donna.dewick@...>

Subject: Re: Trying something new

Date: Sunday, August 30, 2009, 6:21 AM

 

Hi ,

I am still catching up with old messages.

I was reading that when you try new things your body doesn't react well - in

what way? I find when I start new things I feel sore and tight, but with

regular stretching out and also repeating the new activity regularly it

becomes easier and more routine.

You mention building nerve memory - yes, this is true. One of the things my

swim training is doing is re-wiring me to do my stroke differently - and

more efficiently. It take a while to build a new neural memory. A long

while (like 8 weeks of constant practice for each change) but slowly I am

getting there.

Hope you are well. I asked my physio therapist for any research that they

have on how building muscle strength is possible and recommended. We had a

discussion on this topic, and apparently the original P Vinci study on

overuse of muscles has been disproven by another study and also is under

review by Shy and team. I will forward the names of the researchers

and studies when I get them.

Donna from London

www.myfitnessyear. com