Exercise and the gym

[curlyburli]

For nearly a year I have been going to a local council gym. But since end of january my balance has deteriorated and my foot drop has worsened. I am waiting for new AFO's which I hope will be better. Now does the gym work (wass 20 mins on treadmill and 15 on exercise bike) . During the exercise I dont have probs. But could it be making my CMT worse?. Can it accelerate the symptoms?.

[Amanita]

Hi Curliburli,

I wonder if you may be exercising too vigorously and for too long at a time......... ? I suppose that would be determined by a combination of your age, general fitness, and the stage of your CMT.

I have always been exercise-averse (dates back to horrible school sport and gym), but for very many years rode a bicycle once or twice a week ( half a mile to the shops and half a mile back) and walked with my husband for three or four miles in the country every Sunday regardless of weather . I am absolutely sure now that it helped to keep me going. My husband's mobility deteriorated (not CMT) some years ago, and we moved house (300 yards to Post Office; weekly shopping 8 miles away; country roads far too dangerous for bicycles), so I no longer got the regular rides or the Sunday walks. (plus I started driving) I attribute my own mobility deterioration to a combination of that, and the progression of the CMT ( can't estimate the proportions, though).

My physiotherapist has given me a series of exercise sessions supervised by a colleague at the hospital gym (5 mins on exercise bike, a short spell on a gadget where you lift weights with your legs, some stretching and some balance exercises) . I am sure these sessions helped. On Monday I see the physiotherapist again for her to decide what regular exercise I should do in the future (paying, at a local gym?) to keep the deterioration at bay. I'll let you know what she says.

Meanwhile I have a collection of exercises she has set me to do at home. Discipline is a problem, but I really have been doing most of them on most days for about a year now..

[curlyburli]

Thanks. I went yesterday morning and restricted myself to 5 mins on treadmill and 5 on rowing machine. I did leg press too .

Its just as cmt is a slow progressive thing, I want to try to keep ,muscle mass in my thighs . But up to january I didnt see a deteriation and suddenly there is. My neighbour, who I see almost daily has noticed it too.

As I have osteoporosis and diabetes too. I need to exercise but if it is effecting my cmt to such a degree , do I stop?..

[Amanita]

It does seem strange that your symptoms deteriorated so rapidly. Do you have access to a physiotherapist - directly or via your neurologist ? You would do much better to ask a health professional who knows about your particular case. Diabetes 2 can certainly cause peripheral neuropathy, so maybe that is exacerbating your problems. Meanwhile I would be inclined to do regular, but not too vigorous, exercise.

(NB. I have no medical training whatever, but speak from personal experience, and the fairly intensive swotting up I have done in the last year, since my official CMT diagnosis - and learning to use the internet)

[John1945]

Hello to Curliburli....

You don't mention your gender, age or type of Cmt that you have been diagnosed with ? Your previous history of determined exercise shows that you intend to "fight-off" the symptoms of this most debilitating disease ! (always call it a DISEASE, and not a medical condition) :

You have been born with this "inherited£ neurological disease which is normally passed from a parent to their "offspring" : The normal symptoms, such as 'poor balance' - 'curling toes' - 'high arches' (pes cavus) - 'walking on tiptoes' etc, may all show at different stages of your growth : My own symptoms appeared with a vengeance, as a teenager at 16 years of age, although long before that I knew there was something not quite right with me:

In the 60's / 70's the disease was treated as an 'orthopaedic' defect' of my "funny" feet : The surgeons at that time reduced my high arches by removing a wedge section of bone from both my foot arches : A 1 year recovery time followed :

However, whilst the operations did stabilize both feet, nobody realized that my muscles would still continue to deteriorate, albeit very slowly as I progressed through my working life : I am now 68 years old, and managed to work for an unbroken service of 47 years - 272 days : Not a bad work record ? Thanks to the magnificent Westmarc Orthotic Services based here in Glasgow, they provided me with 'bespoke' Ankle Foot Orthotic "toe-to-knee" lightweight polypropylene "splints, which gave me a new lease of life, and total support to eliminate my "foot-drop", and also by now the quickly wasting muscles in my lower limbs : The next stage came in my 60's when both my hands/fingers started to waste : Loss of "fine-finger" dexterity followed, serious trouble with buttons / zips, unable to pick-up coins, etc : You then purchase a "button-puller" to cure this problem :

Exercise ?

Yes in moderation, will assist you to keep mobile : Cmt, and exercise results is a "Catch 22" situation !

>Exercise and you will get fatigued ?

>Don't excercise and your muscles will get "Floopy" ?

My neurologist told me Cmt is like going down a set of stairs : You go down very slowly, one step/stage carefully at a time : When you reach the next step, you then ADJUST, and must MANAGE your changed medical circumstances : A 'POSITIVE-MENTAL-ATTITUDE' is most essential for you, Cmt the sufferer to defeat the ongoing of this most frustrating of neurological disease's :

Your SUDDEN ? and further deterioration should be investigated by your neurologist, as Cmt is a slowly progressive worsening neurological disease :

Tell CMT ! Hoi, you can just "p**s-off", as you ain't gonna beat me ! ! !

John.... (Glasgow)

[lowther1 in reply to John1945]

I have a very similar life as you. I am now 63 and no longer able to work. I tried going to the gym for aged and infirm, really enjoyed it, but have had to give it up for now as i have a prolapse. My GP would like them to sort it with an op as she says i go through enough, but no, the surgeon has me going to physio and is dragging it out. I also have AFO's which have made my life so much easier. I use a respirator at night. But i too have noticed a rapid deterioration in muscle, so exercise must help. Stay happy and positive .x

[John1945]

Hello to Curliburli....

Ps, I forgot to mention, watch out for DIABETES TYPE 2, which has many similar symptoms to Cmt:

It also attacks your PERIPHERAL (near to the surface) NERVES, resulting in loss of SENSORY (touch/feelings) nerves, and lack of signals from your brain to your muscles, MOTOR (command/instuction) nerves ! ! !

[curlyburli in reply to John1945]

Yes got diabetes type 2. 😕. Was diagnosed cmt way back in 2002. So very knowledgeable sadly.

[curlyburli]

Thanks I do have diabetes T2 as well. I have CMT T1. . I am due to see neurologist soon and I hope he/she knows about cmt. The deterioration seems to have come since about january. MY normal afo's usually are good keeping me from tripping and falling , but my balance has got worse. I have going to the gym for 11 months and its only these last few weeks my balance and walking has worsened. I just wondered if the exercise has made it worse. I am on insulin for diabetes (my choice)

[Amanita]

If your neurologist knows in advance about your CMT diagnosis, it will give him/her a chance to swot up on the subject before your appointment. My neurologist is no CMT boffin, having to cover a huge range of neuro-probs including epilepsy, but he is genuinely interested in helping his patients and has certainly done a fair bit of homework on my account. I hope yours is equally diligent and willing to learn. Good luck!

[curlyburli]

I have seen one last year and I requested seeing one nearer home. So the new one I havent met yet. I plan to ask him/her if they know CMT.

[Amanita]

That update I referred to :

I did see the physiotherapist today, and she indeed prescribed a weekly session in a gym, at a reduced fee. I agreed this would be better than buying an exercise machine and probably failing to use it regularly. She said I would have a programme devised to meet my capabilities and needs ; ie not too strenuous. She reminded me (I had forgotten) that everyone, even with CMT, should aim to have half an hour of moderate exercise five times a week. It sounds daunting, but it can be made up of various components, (walking a bit, climbing the stairs a few times, a little gardening), and needn't be done all in one go. Of course if you walk as slowly as I do, you will only manage a short distance and get tired ,But I can see that it should all help to keep the weedy muscles working, and may even strengthen them a little - but it will be a real challenge !

Good luck with seeing your new neurologist, Curliburli.

[curlyburli]

Thanks. I will give thew gym a rest for a while at least till I have seen the Neurologist, as my walking is a little better now after a two week absence from the gym.

[Amanita]

Really does sound as if you were being too enthusiastic with the vigorous exercise ! Maybe just a bit of walking every day could keep you going until your appointment. Let us know how you get on with the new person.

I got my 30 mins all in one go today - shovelling snow. And had to go and lie down afterwards to recover.

[curlyburli]

Know the feeling !. Shovelling snow .. I cannot walk without difficulty and use a mobility scooter.