Assessment.: Has anyone else had a... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

1,678 members666 posts

Assessment.

lowther1 profile image
7 Replies

Has anyone else had a recent DLA assessment. I have mine next week but have very little proof of my condition , it's not something you go to the doctor about. I just manage, I wear AFO,so on both legs for drop foot, but sometimes need you use my crutch. I can't imagine how I will stay awake if it's long and down out. I don't look disabled until you look at my hands and feet. I'm 63 and have no other income. Any ideas.

Written by
lowther1 profile image
lowther1
To view profiles and participate in discussions please or .
7 Replies
Exhausted101 profile image
Exhausted101

Take your crutches....!

Seriously, they want to know how it affects you on a day to day basis so think about your very worst day and on a sliding scale how many good/bad days you have - and if you don't have any say so!. I was actually told by my assessor (!) that instead of focusing on what I could do focus and explain what I couldn't (at which point I promptly burst into tears). It takes a bit of thinking about as you need to find the words to describe how you go through your day and explain in what way you can't do things and why you can't, if it takes you a long time to do them, and if you can do things consistently. If you have to use crutches explain what happens if you don't, both at the time and afterwards.

Just btw, CMT IS something that you go to the doctor about as the GP is the gateway to a lot of services e.g. the physio, OT etc. In this instance uffering in silence and the stiff upper lip doesn't always do you any favours especially if your CMT is worsening.

Morllyn profile image
Morllyn

Exhausted101 is right, think of what you cannot do and how CMT changes how you do the day to day things.

Write it down! Make a list of what you can no longer do, of ways you need to do things now as opposed to before. Lists always help, just in case you get anxious and forget something.

Just try and relax.

missspain profile image
missspain

hi lowther1.

im in the same position as you, i use a walking pole plus have to hold on to my partner now when walking,my balance is non existing i have foot ups on both feet [to help me not trip] I'm so clumsy ,the list go s on and on.i have no help what so ever from my doc s in fact most of them have never heard of c.m.t.i was told years ago there s no cure for it you just have to get on with it. that s all the help iv had.im dreading the brown envelope dropping through my door.im 67 but still fall into the age bracket to change over to pip.so can some one tell me who do we ask for evidence of our disability.i just wish they could try and walk in my shoes for a day thats the only way any one will know how i feel....its hell.

spabbygirl profile image
spabbygirl

thats what I think misspain, I wish they could feel what we do. But the next best thing is to write it down and take it with you, you really don't want to think of something you should have said after you've left the room. You really have to explain every detail, so its impossible to miss. Good luck!

curlyburli profile image
curlyburli

I am imminently waiting for the dreaded face to face. Was told by ATOS that unless I am in a wheelchair, bedridden or terminal, I have to go in to the assessment. My friend is coming with me for support. I am driving half way then getting a taxi to the door. Invaluable if you take a friend or family member, who knows you to go with you for support.

Glantz profile image
Glantz

I had my first PIP face to face over a year ago, it went fine, in some senses this was the luck of the draw, but I was also very prepared. I concur with what has already been said. Remember you have the advantage of having a named and well documented condition. You also need aids to mobilise. The key terms for PIP are 'reliably' and 'repeatedly' and 'safely' if you can't do a task 'reliably' and 'repeatedly' and 'safely' for the purposes of the benefit you can't do them at all. Remember this when you're answering their questions. Don't be manipulated in saying you can walk such and such a distance. Keep to speaking about your worst day as if that is the only day because for the purposes of PIP and why you need it the extreme of your condition is the only truth that matters...

lowther1 profile image
lowther1

I had my pip assessment yesterday, it was not as horrific as i thought it would be. The lady was very respectful and gave me time to answer questions. My husband was with me as hes my carer, he was able to help me with questions if i couldnt think. The questions are designed to cover a range of disabilities, so some seem ridiculous to you. I found the simple range of exercises difficult, but there was no pressure. Now just to wait for results.!!!

You may also like...

PIP face-to-face assessment

expect. I have type 1 CMT with severe scoliosis (which they treated as a separate condition).

CMT face-to-face PIP assessment

complexity of our disability, and mine specifically (not only CMT but other dovetailing conditions)...

Results from Assessment

just feel what is the point of appealing. They have no idea how this affects me and my family on a...

ESA Medical Assessment

Hi, My name is Jenny and I have CMT1 and for the last 4 months I have been signed off with stress...

Do most of you have the inverted champagne bottle legs that rhuemy says is classic?

entertain the idea that I might have cmt because I don't have the classic looking legs, and my main...