Chris's blog....... more updates march 17th

Hi my names chris I live in West Yorkshire and have been surfing this site and cmt-uk to gain knoledge and Information about my condition.

A little about me,

About 4 years ago (age 21) I noticed that my calf muscles were on the small side so long story short I went to see a doctor about it not long after seeing the doctor (who had refered me for a nerve conduction study) I found Info about cmt that seemed to fit my issues ! I was scarred and shocked that this could be the case and hoped it was not.

But last year after many tests and seeing many specialists I was diagnosed with Distal hereditary motor nuropathy / CMT by this time I had come to terms that it was looking more and more likely to be the case.

In the years leading up to being diagnosed I had been married and had a baby boy who is now 14months old I have recently informed my work and they seem to be supportive only time will tell.

I'm fairly happy but being quite active I now feel a little self concious about the size of my legs as I'm 6ft4" so they are a big part of my if you will parden the pun. I go to the gym 3 times a week and have gained good upper body strength which helps getting about up and down etc.

If anyone wants to chat please do as it would be great to hear from people in the same boat.

Cheers Chris

33 Replies

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  • Hi Chris, well done it seems you have been pro-active in seeking medical info and going to the gym, all healthy stuff. Keep it up. Try not to let your self conscious feelings get in the way of having a positive approach to deal with the condition. That's what people warm to and a good sense of humour. Take care and keep up the good work!

  • Thanks for the kind words its great to get some replys from you guys and gals

  • Hi Chris, I am now 62 and was diagnosed with CMT 1A when I was newly married in my early 20's. My advice to you is to live life and enjoy it and forget about the CMT, it is a pain in the ass but there is currently no cure so don't worry about it. There are plenty of people who suffer a lot more than those of us with CMT, so lets be grateful that's all we have.

  • I could not agree more sometimes I do feel sorry for myself as I'm sure we all do from time to time but the fact is like you say there is much worse off than us and I'm glad for what I have. I'm sure over the years you have had your ups and downs. Do you have any other advice that has helped you I would be great full

    Cheers chris

  • Hi guys and gals

    What do you do for recreational activity ?

    Sports or walks etc please give as much detail as to how you get on and things that you have had to change to help you achive your goals.

    I used to play squash regular before diagnosis to help build up my legs I was ok to be fair I think my long reach helped a lot haha the reason why I stopped was knee pain and ankle pain.

    I currently go to a gym 3x a week and break my workout down like this

    Monday

    Shoulders

    Tuesday

    Chest and triceps

    Friday

    Back and biceps

    I'm waiting on a visit to see my neurophysio as regards to best exercises for my legs as I have has a routine before but felt I was not really doing much good (also I fell out with my legs as I blamed them for the CMT if that makes sense)

    Sometimes to mix it up a bit I will throw in a day of core work and a day of purely arms.

    My diet is generally good eating clean and lean as I feel that if i am carried weight on my burdened legs it may aswell be usefull weight ie not fat

    I'm no professional by any means so if anyone has any tips advice as regards to my regime please comment

    :D

    Chris

  • By all means keep fit but don't try and convince yourself that going to the gym x times a week will beat the disease, in fact some physio's I have talked to have have warned that over excercise can make matters worse. The last time I went to the Gym was last century (lol), but I keep active, eat a sensible diet and watch my weight. Apart from that I take cod liver oil, mini asprin and zinc everyday to help keep the joint supple and the circulation going.

  • Hi Chris, good to hear fron you. I was similar, I was diagnosed in my 20's when I was working as a nurse, riding horses on off days and dancing at the local disco at nights. I was really shocked to hear I had CMT 1A, there's nothing like that in my family. I'm just over twice that age now and have calmed down a lot physically by choice and I just write books now. I learnt to follow my body, I change from nursing to social work cos it's less physical & now ride with riding for the disabled & write books instead of dancing. There have been a few times when lack of function has irritated me but when that happens I generally grieve for a while then get on and do something else. We're lucky we've so much opportunity in this country. I just wish I'd thought of joining riding for the disabled years ago, I might even have made the olympics! I shall just have to be a famous novelist instead!

    Nice to 'meet' you and take care, Lynne

  • Hi Lynne the riding sounds fun ! I have been on a horse only once as 10ish year old and it was enjoyable my next door neighbour has aces horses and they are kept on a field directly behind our houses so we can see them galloping around and playing its really nice.

    What kind of books do you write ? Any published or links to them.

    As regards my job I'm in limbo as I work in the motor trade and I am very concerned about my future prospects either within this company or retraining to something less physical.

    :) Chris

  • I am under no impression that exercise will reverse the disease progression and I have read similer things about exercise possibly making matters worse but currently it helps to put my mind in the right place.

    I understand the reason for cod liver oil but Could you give me a little information on the zinc and small asprin you take daily does it help ?

    :) chris

  • I'll just jump in here about the over-activity thing.

    In years gone by,it was felt that if you exercised (at all!) you would over-stimulate the damaged nerves and make the condition progress quicker. So a whole generation of couch potatoes was born (myself included!)

    This has been pretty much pooh-poohed by the current medical thinking - its much more a case of "use it or lose it". Exercising won't halt the progression but it WILL keep the muscles that are working, working - it will keep you more flexible and it will keep you generally fit - so it's all good.

    What our physio adviser says is that when working in the gym, only work to about 60% of your maximum capacity, and if you're doing repetitive stuff, it's better to increase repetitions rather than increasing the weights or tension. As a general rule of thumb, if you're still aching 48 hours after exercising, that's too much!

    Karen

  • Hi Chris, how lovely to be able to look out on horses, I'd love to do that but it's just an average housing estate here. I haven't had any books published yet, I'm not far off completing my first one and I can't wait to get it finished and sent to agents. In reality though it's often the fourth or fifth book that gets sold, once you've learnt the skill a bit more. But never mind, I shall just keep going.

    I live near Swindon & the motor trade seems to be in change here, Honda recently made loads of people redundant, another manufacturer, I forget which, took loads on. I always reckon one door closes another one opens especially if you're open to change. Lynne (can't do smiley faces, must learn!)

  • Hi Chris, my name is Catherine and wad diagnosed 2years ago, I have a Facebook page, CMT Glasgow - Catherine Martin, it's a page to raise awareness and meet other CMTers. My email address is kitbo21@yahoo.co.uk if you want to keep in touch x

  • Hello Chris....

    Your positive metal attitude, is the totally correct way forward, in all types of CMT !

    MANAGEMENT/ACCEPTANCE?/ADJUSTMENT, is the only action you can taken in this "progressively- worsening" medical disease, (always call it a disease - not a condition) !

    No amount of physical exercise will stop your lower limb's muscles from wasting, as the basic component that you need to build, and try to "bulk-up" your legs muscles is not present: Both my two Grandsons, aged 17 & 14 have inherited Cmt from me, via their mother: Over the last four years they have attended football training twice weekly, which has been of benefit to their lower limbs strength: The 17 year old's feet are twisted, with high arches, but he has told his surgeon that he wishes to delay any surgery, until his education is complete:

    Hopefully your efforts will delay the eventual need for you to seek, physical orthotic devices to assist with your mobility:

    Your individual physical needs will require you to consult an Orthotist, who will provide devices such as Splints / Ankle Foot Supports (AFO's) / etc:

    Let's also not forget about the "deaded" Cmt hands, which also will gradually deteriorate as you get much older: They tend to get very weak, and the fingers start to "claw-in": Your fine finger dexterity will be severely reduced: Buttons / tying laces / handling coins will a become difficult to handle, however, you can purchase various devices to assist you;

    But Hey !

    This is when 'YOUR OWN PERSONAL', and most positive mental, and physical attitude, plus management, "kicks-in" and apply:

    You alone, and 'PERSONALLY' must then apply a most 'POSITIVE', and 'mental' approach, and say to Cmt "so-sorry" ! but just you "piss-off" as you ain't gonna beat me" !

    Best of luck !

    John (Glasgow)

  • Hi Chris, I wasn't diagnosed until my fifties so just got on with life thinking that I was just clumsy, awkward, prone to falls and dropping things. When I finally got a diagnosis I was actually relieved that I wasn't imagining the symptoms. I find swimming and water aerobics the best way to keep fit as I can exercise safely in a pool without worrying about over doing it. I also have an exercise bike that I use to keep what little muscle I have. As everyone has said find what works for you and try not to worry.

  • Keep going Chris

    Regards

    Barry-Ex Soldier

  • Thanks for you your comments guys please keep them coming in if you have any comments or things you think relavent :)

  • Well I must say I am looking forward to the summer and having a few BBQS and spending time in the garden with my boy.

    Anyone else have plans for the summer months holidays activitys etc

    Chris

  • Hi Chris

    My little boy was diagnosed with CMT 1a about 18 months ago, he is now 3.No one else in our family have CMT. We started to notice that he too was having issues with muscle bulk and was at 1 year old not taking any steps to try to walk. Like you he had the nerve conduction tests, he also had an MRI and DNA blood tests to finally give a conclusive diagnosis. We were initially devestated that our little boy was not walking unaided and seemed really clumsey. Having the diagnosis has helped us as a family move forward and last Christmas Jospeh began to walk with out any help which was the best xmas gift ever. yes his gait is very stiff but at least hes making progress. Hes such a happy little boy and his condition certainly doesnt hold him back. He doesnt appear to be having issues with his hands but his reflexs in upper and lower body are greatly reduced. He wears special Peidro boots and AFOs to hive his ankles support as he tends to talk on his insides but at least hes walking! I truesly believe that having a positive attitude toward it like you have is one of the best supports, hopefully this is something Jospeh can take with him the older he gets and adjusts to life.

    Sarah

  • Bless him I bet he loves toddling about as my boy does at that age they are so care free and happy. I'm glad you finally got a diagnosis so you can move on and deal with it but it must have been hard especially as he could not have told you about problems he was suffering.

    But I will bet he's a busy little boy he's got all that playing to do and in the night garden to watch haha. Keep in touch x

  • Ahhh yes the Night Garden, luckily we have now moved on from Iggle Piggle and pals and now into Scooby Doo!

    Sorry just wanted to clarify where i put no one in our family has CMT, should have put to our knowledge. No one on either side has shown symptoms so its likeley that if we do have it its so mild it causes no issues.

    Received an appt yesterday from Josephs Pediatric Neurologist, have scheduled another MRI for the summer just to check on him. Apparently on his initial scan there was a small degree of white matter change. Did you have an MRI? We have been told by our genetisist that a very small % of people with CMT can have this abnormality....

    Sarah x

  • I also know of no one in my family that has the diesease I asked grandparents on both sides and they don't recall or know of anyone that has it.

    I have had MRI on my spine about 18months ago and they said I had excessive wear on my lower back spine for someone of my age they never said anything about white matter.

    I have not heard of white matter could you give a little information.

    Thanks Chris

  • Sorry, should have been clearer. My son had an MRI of his brain and the white matter was a section of the brain which showed white areas meaning an abnormality according to the radiologist and consultant.... I have contact CMT United Kingdom about this for more info and they too were unsure of this type of finding on a person with CMT. My sons a mystery!!

  • Hi Chris, I was diagnosed with distal hereditary motor neuropathy type II officially last year, initially I was diagnosed with cmt and the distal spinal muscular atrophy. I'm 35 and have had symptoms since earlies 20's which started with recurrent ankle sprains. I now wear a safo (silicone ankle foot orthotic -I think) on my right foot always and have one for my left which I wear when I know I'll be on my feet longer. The downside of supports is that it does waste the muscles quicker (evidence of the use it or lose it approach) but the plus side means I can get further when walking. I have continued with exercise and swim regularly (swimming pool steps can be tricky so I use my arms to pull myself out, and I can use a cross trainer at the gym. I still cycle although stick to paths now as I struggle with hills but there are always electric bikes to try.

    Mostly I have found it easier to be open about my condition. In the past I tried to hide it but then would be pretty screwed when people hike off! I have recently started a new career path as I was a dental hygienist and am aware of my hands starting to be affected ( no one wants a hygienist with a poor grip ;-). I completed a psychology degree and now work as an assistant psychologist with children. I love it!! So changes can bring about positive things.

    Anyway crazy long answer, I have ups and downs but approaching it positively definitely helps! It would be worth checking if you can get any support with retraining?

    Steph

  • Hi I have already spoke to my disability employment advisor but as I'm in work currently (paint sprayer for a car company) which has become extremely difficult and awkward she says I cannot get funding with retraining as I'm in work.

    As I said before I have a 14mongh old and my wife works 3 days a week and it looks like her company is going bust in the next month and I work 5 days a week not a night goes past when I don't fret about paying the bills/mortgage in the coming months.

    I feel trapped in my place of work currently although I have made them aware about the diesease in the last week and I will be getting HR to come out and see a out making changes to help me work but to be honest I cannot see how they can implement the things that I need help with.

    I would retrain I have no problems with that but I worry about paying bills in the mean time my entire working life so far has consisted of car maintence and repair with me always being physically involved with the job.

    Any advice or pointers on moving forward with retraining would be appriciated

  • Hi there CNKH,

    Looks as though you're keeping as active as is reasonably possible, and trying not to become too preoccupied with the CMT (= very difficult after diagnosis) . I was always treated as competely "normal" in spite of being a lot worse at school sport and gym than the next-worst person, and suffered a lot of misery and humiliation accordingly. Consequently "sport" is an honorary 4-letter word for me ! Later I went for regular country walks with my husband; he was pretty tolerant, and would wait for me to catch up , and give me a hand for the difficult bits requiring balance.

    When I had an unofficial diagnosis (that's another story) of CMT 25 years ago ("it will get worse and there's no cure") my academically preoccupied husband didn't react at all when I told him, and obviously there was no point in going to a doctor. So I just continued living "normally" and falling over etc., until 18 months ago. My (older) husband needed a lot of care by then , and I really wasn't coping, so decided to try the NHS, to see if there was a cure for CMT after all that time, and at least get a proper diagnosis.

    I know now that my mother, who died 40 years ago, had CMT (did she know?), but no allowances were made for her, either.

    Although it was sometimes very tough, I think I probably benefitted from this attitude on balance, especially from the beautiful country walks. My mobility certainly deteriorated when my husband had to stop, as I had no-one else to walk with, and couldn't have kept up with a group.

    Also, I mostly managed to avoid situations (except falls) where my problem was shown up in public. Other people just seemed to accept the falls, but I did eventually feel that they were getting rather excessive.

    Luckily, I had chosen a sedentary career, trained as an artist/illustrator, and have always worked from home. In spite of the weakness and impaired feeling, my right hand can still handle a pencil as well as ever, thank goodness. That is, provided the hand is warm enough !

    Best of luck with yiour future career, training, and bills. I wish I had some useful advice.

  • hi chris my name is sue, using my dad`s name (williamalfred) i was diagnosed with cmt type 2 in 1994 after the doctor said it was all in my head. my son who is now 27 had problems with his calves, they were short for his height 6` 2", he`s now been diagnosed with distal spinal cmt we are not quite sure what this is until we see the genetics department at the life centre in newcastle because therer isn`t anywhere closer to home.

  • Hi chris, I had no luck with supporting career change either so studied part time (incurring student loans) and the job I have taken now even though I love it is a substantial paycut but does have the prospect of being a career that I can do long term. It is difficult with mortgage repayments etc. You could check out nationalcareerservice.Direc... to seek out advice?

  • Well I went and had a interview with a work phyclogist through the job centre I took a day off work as it was an all day thing. And what a disappointment I had all these aptitude/problem solving tests and memory reading maths test to boot which basically showed I was in the average for my age which I was shocked at because if you have read all my blog you will see my grammer is rubbish. Anyway after all these tests they told me to write some jobs down I like the sound of and look them up using job search engine by this point I was frustrated and said to the woman "I don't mean to be rude, but I can do all this at home" as I then went on to explain for a third time that I was in employment on a average wage and cannot afford to change to an entry level job with basic pay. I was expecting to get some information about retraining night school college etc and possible avenues I had not explored anyway its done now so at least I can say I have tried.

    On another note this week I have been diagnosed with celiac disease (gluten free diet required) as this affects absorption of nutrients from food leading to a deficiency could this be related to my CMT as my GP sort of but not 100% sure said maby it could ? I instantly dismissed the idea in my head as I have had blood work that shows B12 to be normal and just iron a d folic acid to be low (I have suppliments for these)

  • hi cnkh interesting to read you have been diagnosed with celiac disease i`m very sorry to hear that.....i`ve had problems with indigestion and wind for years doctors have always dismissed this when i`ve been to see them, it`s taken nearly twenty years for them to listen to me, i`ve had tests and they`ve found gallstones, now have to go on wheatfree/dairy free diet, this has been a god send in one way, my stomach hasn`t felt this good for years doctors haven`t said it`s to do with CMT but they don`t seem to care either. i had tests for celiac disease but that was negative, good luck with your diet.......just to let you know this wheatfree stuff is expensive..........regards sue.

  • Thanks for your reply sue and glad your feeling better for the diet changes.

    This last week I have had my first of what I assume to be many gait analysis at chapel allerton hospital in Leeds it went ok I don't need any forest gumps yet (please excuse my dark humor) my insoles will do for now, I did feel wierd walking up and down with these silver marbels stuck to my body.

    The doctor showed my the video after of my superimposed skeleton walking and I chuck my hips into each stride and lock my leading leg while bringing my other leg forward rinse and repeat etc

    So I will be getting some in shoe orthotics (I have one pair already that are in my work boots) I don't feel anymore balenced with them in and get tired faster but I assume that is down to me using other muscles and trying to build them.

    I have also had the last few weeks out of the gym for a few reasons really

    1,my lower bad has been very painfull, my doctor gave me a local anesthetiser to rub in my back what a waste of time just made my back sticky.

    2, My wife recently got made redundant from her work and my stress levels hit the roof, but luckily she found another job that's pretty good money and full time and she has started this last week. So this means I drop off and collect our 18month old from his grandmas so I have no free time to visit the gym.

    3 and finally my head has been in a bad place (not lucking for sympathy I just want to share so you know if you feel the same your not alone) thinking about the future and MONEY and my job and health and having such a young child. Aswell as the usual crap that everyone has to deal with daily. I don't deal very well with stress I'm very impatient and cannot just stand idle when I think something could be sorted or fixed. Which is not always good as I tend to rush to try and fix situations and end up being worse off. Stupid head :(

    Anyway feeling better now and have had a good weekend the family has a little day out at nostel priory where they had a charity fair of sorts for Down's syndrome charity's it was good if not a little chilly.

    Hope you are all well

    If anyone wants to chat send me a message

  • thanks Chris, maybe this food intolerance is due to cmt but we`ll probably never know. i`ve just got another splint for my left leg so when i walk around feel as if i`ve got two wooden legs lol. Could have done with one of those videos to see how i walk would be interesting to see, but never been asked to do one, the only hospital that deals with cmt is 10 mile away from us in middlesbrough.

    yes that is a load of rubbish doesn`t work.

    glad your wife has found another job.

    sorry about your head been in the wrong place, been there.....cmt being tired, worrying about your wife`s job or in my case my husband`s doesn`t help your condition.

    glad you`re feeling better and had a good weekend, it all helps..

    yes hope everyone is keeping well.

  • Just a quick note here - there was a school of thought (American?) that linked coeliac disease with CMT - but it's now been pooh-poohed by proper medical professionals, so it's one of those unfortunate coincidences. Food intolerances in general are also not linked - CMT is just purely a peripheral nerve disorder, and doesn't affect things like stomach, kidneys, liver etc.

    Chris - I do hope you get your job and working situation sorted out. Sounds like a complete nightmare.

    Best of luck

    Karen

  • little update

    well my work situation has improved so now im working with the same employer but undertaking a different job that is better on my legs. my wife is in full time employment which financially is a little better but has taken a hit to my gym time as i am now drop my son off to child minder on my way to work and pick him up after work.

    I have noticed while driving i tend to press the pedal with the outer edge of my feet and on long journeys this is causing pain in the ankle.

    I had an appointment with my consultant neurologist and explained about the pain i then went on to explain that i had sprained my ankle years before diagnosis and still had the support velcro with plastic inserts type and i used it and i felt it made the ankle less painfull the DR suggested i visit a running shop and try on some supports.

    Its not all doom and gloom, most sundays we go swimmimng with my son thomas hes 18months and he loves the water and it give me a chance to kick about abit. I am self consious when walking to the pool but thats just something i will have to put up with.

    hope all is well

    chris

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