Having a rough time accepting

[james4872]

I'm new here..I have charcot Marie tooth syndrome also..

[Amanita]

Accepting IS rough.

I unexpectedly had an informal and unhelpful diagnosis of this thing I had never heard of many years ago (long story) - and simply swept the whole thing under my psychological carpet, even though it did explain a number of problems. Decades later I was the carer for my husband and realised I was quite unequal to the physical tasks expected of me. Only then did I seek a proper diagnosis -and help.

Subsequently I have had to accept going out in public with an obvious disability - trying to make do with a walking pole, graduating to a crutch and then two. As soon as I have cracked the problem of getting a power chair into a car unaided, I shall have to face looking "really disabled" - but will have freedom to get around when I have driven somewhere.

Acceptance by degrees, I suppose.

I hope you have supportive family (I have no family) - and friends.

[james4872 in reply to Amanita]

I'm 44 ..my mother was wheelchair bound by 50..this is progressing in me alot faster than doctors said. .to the point I cant work. .I have only two people who knows what I am going through. .my sister and my best friend. .luckily my best friend is a registered nurse. .she is a tremendous help..but the psychological..and emotional impact it has on me is rough..I'm still trying to find the right doctors around this area that can possibly help and understand the problem. .and possibly keep me as active as I can before it completely disable me..seems like just in the matter of six months the cmt has gone from bad to extremely worse. Thank you for responding. .my hearts with you and take care of yourself.

[Jealousone in reply to james4872]

Hi James4872, My name is Jane. I'm the only one I know with cmt. My mum was English. I believe she had cmt and never knew it. She ended up in a wheelchair by 70 and died at 73. She had 3 kids and gave cmt to one of them : me. I have had 2 kids and gave cmt unknowingly to both. I am now 48 and kids 18 and 21 - we have now learnt we have cmt. The kids forget about it and I have to use a walking stick for mobility, balance and tiredness. I try to keep a positive attitude but it's hard. I'm too young to have a disability. My husband is Greek anf next month I have to face his large and opinionated family - what fun

[james4872 in reply to Jealousone]

Hi jane..it is something that we can't help..don't let opinions of others get you down..as hard as it may be..I know that feeling. .in my family there are 7 of us with CMT..and each had it strike at all different ages..stay positive. .well wishes to you.

[Jealousone in reply to james4872]

Hi James, Hard to stay positive at times. Need a loving and supportive family. Pity I havent got one. Jealous One

[REGreen in reply to james4872]

Hello James,

Yes, it is hard to accept. At first the diagnosis was a relief- there was really something wrong with me and I hadn't just let myself get terribly unfit; it wasn't my fault I was having such trouble walking and balancing. But after a euphoric period when the surgeon promised complete recovery within six months (from the surgery I know now, not from CMT). I had to face up to the loss of my work, which was a joy to me, and to my income, to most of my active hobbies and all I had planned for my future. My father had CMT which was never diagnosed and spent the last three years of his life in hell so I had that prospect before me. As it happened the surgery went very badly so I have had to have more and more to put it right and seem to spend six months every other year having more and getting over it. Fortunately I seem to have reached a plateau and my feet have not got any worse for a while so the surgery has helped to maintain my current state, but the future does not look bright as my hands are gradually getting worse, which affects my more sedentary occupations as well.

I cannot offer you much comfort on facing the future, but do try to find a doctor who specialises in CMT. If you live in Scotland there is a new clinic specially for CMT at Queen Elizabeth Hospital Glasgow where you can access all the medical and support services necessary for your disease. There is also one in London at UCLH. Look on the internet or consult CMT UK's website for clinics near you and don't be put off by non-specialists or GPs telling you inaccuracies.

Good luck, RE Green

[james4872 in reply to REGreen]

RE Green..I am considering the reconstruction surgery on my feet..but afraid that I am going to have trouble learning to walk after..weakness in lower part of my legs is my concern. .plus I'm not sure if the pain is worth the gain..meaning will surgery keep me out of a wheelchair that much longer. .I got a lot of thinking to do..thanks for the response.

[Jealousone]

Hi James4872, I'm new to CMT and I have trouble dealing with it. I was diagnosed in May this year. I dont even like to call it what it is. I try to distance myself from it. It's hard as you are so active and able and now you are permanently disabled and are only going to get worse. Its like you have to cope with a loss - a loss of ability - and it will take a while. No one can understand what you are going through as we don't look sick. It's hard - chin up and as the song says "always look on the bright side of life"

JANE

[lowther1 in reply to Jealousone]

It took me a while to admit l have it but you do get used to it eventually but it is a loss , just like facing a death. Two of my children have inherited it and that makes me feel bad, as we didnt know what we were dealing with until after they were born. My mother was always told she had Arthritis, her hands were badly affected, and she had always worn laceup shoes. My brother also has it but my 2 sisters havent so therefore nor have their children. l have one child without it and he has 2 healthy children. My daughter has opted not to have children, and my youngest son isnt interested in having them at the moment. For myself it didnt start having any real effect until my 50's, until then i played badminton ran around after 3 children and worked full time. Then i started tripping after a few falls l wondered if there was more to it, i was slowly developing drop foot, i was more tired as my gait was changing due to trying to control my walking. l had to reduce my working hours. Several years later l have retired, but a year ago l was given some AFO's they have changed my life l can now walk with confidence, l have started going to the gym. l no longer feel embarassed about my DISEASE because thats what it is. If people ask l tell l dont feel embarassed anymore. I have just been on my first cruise it was great. My regret is i can no longer wear little shoes but its not the end of the world. I tire a lot more my hands are bad, but l regularly have my nails done. I have an amazing husband who does all the cooking, and helps me all the time.

What l feel is you cant do anything about it so you need to learn to embrace it. More people are becoming aware of it, even here in the depth of cornwall. My podiatrist son says its more common than you think, but shows itself in many different ways, no 2 people are exactly the same.

I

[Jealousone in reply to lowther1]

Hi, Accepting is tough, especially as I feel let down by those health professionals and my mother as I was growing up. As we all know, cmt is for life and everything that goes along with it. I had the foot deformities and voiced difficulties with them many tumes to my mother when I was 13 . She swept them under the rug n totally ignored them. I saw a podiatrist when I was 19 re shoes. She examined my feet n recommended I have every bone broken n have them reset. She said it was very painful n I would have to learn to walk again. She said I would not be able to work for a long time - I was a nurse. So that was out of the question. When I was 22 I went to the local university to have orthotics made - sore feet -. I was examined by the head of podiatry - American guy - who couldn't believe I was born this way. I am now 48. So this wasn't i ancient times. It's hard to believe no one in Australia has heard of CMT - are we that backward here??? CMT has been around for years. Accepting is tough - I don't know how I'll be perceived by others . I'm only 48. I'm not old. I don't want to be treated like I'm a little old lady of 90. I can't hibernate. I'm not a bear. I'll just have to face my husbands family n get over my fear. No wonder my blood pressure has gone up. It'll be normal soon - I just have to deal with CMT. I can't let it make me sick.

[Amanita in reply to Jealousone]

Hi, Jealousone,

There is actually a CMT organisation in Australia: CMTAA. It has support groups in various parts of Australia, so you can check and see if there is one remotely in reach of where you live. I am in Scotland and don't know anything about CMTAA, except it exists. I do hope they can make you feel less isolated, and maybe even offer some help and advice.

[oliverdeb in reply to Jealousone]

hello Jealousone , this is Oliver , i am like you and 53 years old , just saying hello to you , i find myself so lonely sometimes , even though i have family , because i just got confirmation 1 month ago i have CMT, if you saw me you would think i am normal , but always have pain in feet and now it starting to effect my hands , thats what really made me upset. any way , just dropped a line , we can be friends if u like ,i live in Sydney western Suburbs, bye

[Jealousone in reply to oliverdeb]

Hi Oliver, feeling down. I'm the only one I know with CMT. To look at me I look normal. I have constant tingles in my feet, my legs feel heavy to walk and my fingers are always n umb. Some days my arms ache. Some days I feel so alone. My husband doesn't want to know. I feel so useless. I had an active job before this. Ironically I used to he an aged care nurse helping the elderly, now it's me needing help. I use a walking stick as my balance is shot to pieces. I feel like an old lady and I'm not - I'm only 48 - lifes not fair . To end up like this. We can be friends if you like. I live I in Brisbane QLD near the city. Its a bit of a jaunt . Thanks for listening to me rant

Jealous One

[oliverdeb in reply to Jealousone]

hello Jealousone, how are you doing ? i am ok , we have to look at the bright side of life as you know, but easy said than done . i think it is extremely important to talk to other people who have CMT because we understand each other more easily .i think family cares but there is not much they an do about it , we just have to deal with it . the only relief i get from CMT is when i take it easy and dont do anything physically demanding. having said that i am garden crazy so i am a bit worried now that i might have to give it up . i am going to start Hydrotherapy soon so i keep fit and maintain my well being . Jealousone i am a bit concerned about how you feel , have you tried to look after yourself /like doing things that make you happy , or change what is not making you happy . i always believe in taking action to any of my problems thats the only way forward. you can contact me on F.B Oliver De Battista bye and remember you are not alone !

[Jealousone in reply to oliverdeb]

Hi Oliver, Thank you for replying and being concerned about me. It's good to know that someone out there cares. I am ok. I'm not suicidal, just unhappy. I know my husband loves me and cares about me, it's very hard at times. He's trying to keep everyone happy and I get very selfish and very demanding at times. We are under constant financial stress and I don't toletate his mother at all. She could solve all our financial problems but won't and she demands his attention constantly - hence I get jealous of her demands on him. I'm sure everyone has troubles like this. I just have to keep my chin up, be happy and look forward to a bright future.

What do I hate about CMT?

Not being able to move like everyone else.

Having to use a walking stick

Having poor balance

Giving up what I used to like: swimming - the cold water freezes my feet so they go numb and I can't walk on them. I'll miss my pool.

Cycling - I have poor balance and I can't place my feet properly on the pedals - deformed feet

Walking my dog in the park : I'm embarrassed using a stick and I can't walk far - CMT makes me breathless

What do I like about CMT

Only one: I have a disabled parking permit so I can park at the front at the shops.

I'll have to find other interests to keep me happy

They have a CMT Association in Brisbane. I have kept away as I feel they will depress me with all their stories. We all have them.

This message is getting long winded so I'll see you next time.

Thankyou again for being there.

Jealous One

[Coffeeman]

Hi James4872,

I share your feelings. CMT is hard to accept. There are different levels of severity of this disease. I've been living with CMT for over 40 years. As a child I had trouble climbing stairs, running, playing sports, etc... I was always embarrassed by the disease and tried to hide it the best I could. Now in my mid 50's the disorder has progressed. Now I have limited mobility, have trouble getting off seats, and when I fall need assistance to get back up. But I've also changed my attitude. Now I just don't care what others think. Normal healthy people can not understand the disability. But I've come to the point that I've accepted that this is the way that I am. I just try to be the best person I can. I wish you good luck. The only advice that I can give you is try to maintain a positive attitude and focus on the strengths that you have despite CMT.

[oliverdeb in reply to Coffeeman]

good advise James ! i needed that mate

[Jealousone in reply to Coffeeman]

Hi James, We all have to stick together and remember to stay positive. It's hard and we all need a chin up every now and then. Thanks

[Tandarts]

with a positive outlook on life one can cope,I told my friends that a Ferrari mobility scooter is the one I want when the time arrives. Keep your chin up

[Jealousone in reply to Tandarts]

Hi, your post made me LOL - my son loves Ferrari's. He's 18

[Amanita]

Hi, James,

This CMT is a very individual thing in its severity and the way it progresses - it also partly depends on which type you have.

Although it is "slowly and steadily progressive", our perception is more as though it goes down a step, reaches a plateau for a while (maybe for some years if you are lucky) - and then you go down the next step.

I believe this is because you reach a tipping point , between being just about able to do something - to being unable to do it, although the actual deterioration in nerve/muscle function may indeed have been slow and steady. You may be able to adjust to the slowly increasing difficulty, but not to the apparently sudden inability.

In my case the most "sudden" transition was probably from being able to ride a bicycle (I was never good at it) with increasing effort and difficulty - to having to give up.

I am glad you have a best friend who is a nurse - and so supportive. I hope your sister is equally understanding and good to you (has she got CMT too?) I think you may soon find you are having to confide in others, if it is becoming obvious that you are having difficulties. That will be hard at first.

Very many thanks for your kind wishes.

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