We can get through this

[Kieran85]

Hi there am new to all this , am 31 year old , and am half way through my diagnosis! My mum and granddad have cmt , my mum only told me about this a year ago! But that's another story ! My hands have muscle waste in them ! I have curled toes and high arches , but my calfs are so muscular ! And I think this is cos I don't walk probably , but now this has come to light ! It' answer a lot of question , especially from my childhood , there no denying it's massive kick in the chopper , and I was fuming for a good month , but understanding this disease is a massive plus , I now realise what I can do !and can't do ! am really in to the gym , I go 5 days a week, I still run , I still play football , even thou am just the keeper now , as my feet go numb from kicking the ball, I can't lift the heavy weights like my friends cos my hands and wrist can't take the weight , which is annoying , but I just do what I can do and keep going , my occupation is a bricklayer , which is very physical , and course I need to use my hands which is demanding , but again , I just try keep going ! Am determined to not let this shocking disease ruin my life , talking about it isn't easy at first as I was in denial ! But feel better about it now , talk the way forward , peace out cmt suffers

[Morllyn]

You have a good attitude about this, that is good. You can still live a somewhat normal life with this condition.

You say that your toes are curled, be careful and watch underneath them, you can get sores due to dampness and or the friction under there. Check under and between toes often or you could get sores that are hard to treat due to infection that can get in the bone. My husband has lost 3 toes due to that. If you find that you are tripping then you may need braces to stop foot drop. You can really cause damage to yourself if you do not do what is necessary to stop the foot drop.

Take care!

[Kieran85 in reply to Morllyn]

Thank you ! Il keep my eye on that

[Cooper01]

Hi I was exactly the same when I was told at 22 and sort of went off the rails but then put things in perspective... would it have changed anything I had done ? Answer no ... would it stop me from doing things in the future... let's see what happens eh but for now let's make the best of things ... life is for living... we could be knocked over by a bus, could get cancer blah blah so much could happen .... I don't read up to much on it as I found the 'sad' stories brought me down and if I was feeling tired I was blaming it on CMT when actually I had just had a really long hard day ... everyone is different but I would keep as positive as poss keep doing what you are doing and enjoy xx

[Exhausted101]

Great attitude (although you're still allowed to get grumpy and pi**ed off sometimes) I've never been one to take much advice so I won't go on but.... watch your energy levels and don't overdo it (that'll help with the frustration and grumpiness!!)

[missspain]

well what can i say ,only keep doing as much as you can,try not to give in.i know it gets you down at times but pick your self up and carry on.that s all you can do.enjoy every thing cos life is short.its no good worrying.keep going to the gym.

wishing you well.x

[Amanita]

Hi, Kieran,

I can so well understand your reaction.

Like you I never heard of CMT until later on - in my case I was 40, and was taken unawares by my Aunt to see a neurologist. He tested my (non existent) reflexes and looked at my high-arched feet and said to her -"yes she certainly has it " as if I were neither there nor involved. So I asked WHAT? and he told me the name and said it slowed down the messages between my brain and my hands and feet, that there was no cure and it would worsen over the years.

I was taken completely by surprise and didn't think of questions to ask him until later, so wrote, but he never replied. I think he was researching CMT and inheritance and wasn't interested in patients. I felt shocked as though I had been ambushed, and though I remained on very good terms, never raised the subject again with my well-meaning aunt (who also had CMT - as, with hindsight, had my late mother) I told my husband and my father about it , but strangely they didn't show any reaction; so after thinking to myself that this CMT might explain my deplorable performance and actual dread of PE at school, I decided to bury the whole miserable thing under my psychological carpet, and just got on with my life, falling rather often and getting breathless running for a bus or cycling half a mile, but able to pursue my career as an artist.

It was not until many years later when I was really struggling to care for my husband and not equal to the physical demands of the task that I dug up CMT from under the "carpet" and went to my GP. At least I knew the name of the condition and that his prescription of a couple of sessions with the practice physio wouldn't sort it out, so eventually persuaded him to send me to a neurologist. A proper diagnosis followed, as did help from the NHS. CMT is so much better understood now, and there is also a great deal more information available to us than in those earlier pre-internet times.

Now I am alone and have no living relatives, but have some very good friends who are a huge support.

I hope that after the initial shock and anger of discovery, you will be able to keep CMT well in the background of your life for a long time, but keep active within your capabilities.

Sounds as though you are making an excellent start.

PS Morilyn is right - look after your feet. If I forget to put anti-Athletes Foot powder between my toes for a couple of days, I get a bad outbreak that is extremely difficult to dislodge

[Kieran85 in reply to Amanita]

Hi amanita, thanks for your reply ! And advice ! I totally understand u burying this ! It's what i did ! But I suppose when your struggling with day to day activities , there no where to hide , and it's a bitter pill to swallow , with there being no cure . It does seem like there no happy ending with this horrible disease ! But am just trying to live life to the full , me getting angry and bitter only got me down , accepting this and challenging it , gives me more believe and will power , sorry to hear your on your own through this , but you keep going , take care

[spabbygirl]

Hi Keiran, I was opposite to you, there was nothing like this in my family yet had had several operations on my feet to stop my toes curling up. I kept asking gps what the problem was and none were really worried, they just told me to forget about it. When I was in my mid=thirties my hands started to get weak too and I was determined to find out why. This time a better dr referred me to an orthopaedic dr & he said he thought it was CMT & I needed a neurologist. It was the neurologist who confirmed it and I was so relieved, I knew something was wrong & was frustrated cos of not being taken seriously. Mine CMT is a new mutation, so I'm the 1st in my family. I had to stop nursing cos walking was difficult, so I moved to social work and had to stop that and now I write novels about social work. When one door closes another opens I reckon. Don't forget if to use the benefits system for disabilities if you need it, unless the Tories stop it as they hate paying out things and want lower taxes for rich folk. take care, Lynne

[PGS7]

Hi Kieran, So sorry you are having to deal with this awful disease, my husband is 76 and has lived his life but you have many years ahead so keep positive and strong, there is a cure out there, great strides are being made in medicine and I hope it will help all CMT sufferers. Looking back my husband had many symptons from his 30/40s onwards, but these were not picked up on, he had two ops to straighteN his toes in his 30s. But he was a keep fit fanatic and I really believe this has helped to a degree, in his 60s he was badly beaten up by a gang of football supporters who kicked his head in, and broke his elbow, this resulted in many ops, and as he is also a diabetic has caused his CMT symptons to be masked by his other problems. He was misdiagnosed 3 years ago with Motor Neurone disease and now after three years he is believed to have CMT and everything points to this. Telling his Son who has two children is going to be hard, he does not see them very often, maybe once a year, but when do you tell them, are you obliged to by the hospital, will they have to be tested ? or is it a case of what you dont know wont worry you ?

I wish you all the best, keep fighting and keep strong. Pam S

[Kieran85]

Hi there thanks for your reply ! Ur poor husband ! Seems like he bin through the mill! I hope this disease does gets a cure ! I defo found the gym has helped me , I can still run and lift weights , but not to the degree of a person that doesn't have cmt ! I just hope it doesn't effect my job in the next 15 years cos I want to buy my house ! But am gonna put a plan in place , and do all my lorry test ! So if my bricklaying job gets to much ! I can then do the driving , take care x