Hi everyone,i have a concern about the new pip benefit the DWP will bring in to replace disability living allowance.I get disabily living allowance at the moment.I have episodic ataxia type 2,which means i get ataxic symptoms in episodes rather than constantly,but when i do have a bad attack,i feel like im paralysed.Now my main concern is that when the dwp send out a doctor to see me,i will look perfectly normal to him.So im wondering if i should stop my medication(diamox) before he visits,so i can be sure of having a full blown attack of dizziness,unco-ordination,balance,speech,double vision and many more symptoms,or would it be better if i was ok and explained my symptoms to him,but mayb beforehand get my wife to video me having a full blown attack as a back up.Also im not sure if its better if my wife was there,as she is not a very good speaker on ataxia,and wouldnt make it sound as bad as it should be.I feel it would be better if i had a full blown attack,so the doctor could see for his self,but i wouldnt really feel like talking to him during an attack.I would just want to sleep to get over it.Any thoughts on this would be much appreciated.Many thanks........martin
Tricky one.. if the doctor has done his research before he visits and relaises Episodic Ataxia is not present the whole time he may ask why you aren't on any medication to control it? if he gets info from your GP to say that you are prescribed medication to stop/reduce them he might get suspicious?
On the other hand if he's never seen it and you look fine he might not understand the impact and why you can't go to work when you're not having any episodes? Videoing one might help, he may still want to know how frequently you get them whilst on meds.
I don't know anything about the PIP, I've only just got through the ESA thats taken since January so I've yet to go through the DLA to PIP transfer.
Do you have any disability at all when you aren't having attacks?.. poor balance, mild difficulties when you're tired etc
Hi Marty
I have had concerns too about PIP.I expect you saw my discussion.I read the dwp pip document and voiced those concerns to my MP.Iam on dla now but I dread the brown envelope with dla on it. I can understand the system is corrupt but you would think they would make it fairer.Lots of people have never heard of ataxia because we look ok untilwe try to move or speak.I have ca of unknown cause.I got turned down the first time but keep trying.
marie