Hiya, well I have an appointment Thursday to go and fill in my DLA forms… Ive read up, and I know to write as if its my worst day, and explain lots and be detailed about my troubles.
My question is, how do they deal with the whole relapsing remitting aspect? So far (Since start of symptoms in Aug 2011) Ive not had any noticable remission periods, my walking as always been terrible…only improved slightly after steroids for a whole fortnight! Lucky me lol
Do they always want to see you? Or do sometimes they just deal with it without. Ive only seen neuro once, which is when I was diagnosed, but i do have a copy of the letter he sent my GP in January stating that he would be seeing me at his DMD Treatment clinic and that I was getting progressivly worse in terms of my mobility. Do you think that will be testament enough as to my mobility issues? (Plus the 3 month aspect)
My walking has finally started improving a little bit, and I managed to even get around Asda on my own with no major foot dragging!! Yay! But if things get better does that mean I will get refused DLA if they have to come visit me??
Similar situation - mostly my prob is just bad fatigue and vertigo / incontinence (“just”, ha) but I’m having another prolonged relapse and during this time I’m effectively helpless … so what do you put on the form? I know they say describe your worst day but I’m really wary of them thinking I’m a fraud if they come out and visit me when I’m not having a relapse or a bad day - because then you probably wouldn’t even know there was anything wrong with me. What has everyone else with really variable symptoms put?
Any advice would be really helpful - sorry to hijack your thread mrsp83!
Ginny
PS do you have an MS nurse who could speak on your behalf, if your worried about not having seen much of your neuro?
No not got an MS nurse yet. Only got diagnosed a few months ago, but was pregnant at the time so it was decided I should wait till after the baby to see him next at his MS clinic for more MRIs and start DMDs. So my first proper appt with him is end of April.
MS43 - I was referred to CAB by Sure Start who are helping me sort things out where me and my baby are cncerned. CAB have arranged an appt to fill the forms in with me, and said it could take up to 2 hours, so I guess they’re thorough!
My main wish is to get the high rate mobililty so I can get an adapted car! Had to stop driving mine for a while as I couldnt feel the peddles!
Hi, good luck with your application, you seem concerned about a dr visiting you, I wouldn’t tbh, I applied many years ago and a dr visited and I was able to show him how I managed (or rather didn’t manage) about the house, showed him how I found it hard to get into the bath by showing him how I had to hold on, ad showed him how I could sit on floor but it was hard to get up, he had to help me up lol, showed him the stairs with nothing much to hold on to, so these are simple things but if someone visits show them all this. Explain now bad things get for you even if you are having a good idea. One more thing, you say you want high rate mobility so you can get an adapted car, you can organise an adapted car yourself without getting high rate mobility, you just need to get it adapted. Just to give you encouragement when I spoke to the garage about getting my car adapted the salesperson asked if I got high rate mobility, when I said I hadn’t applied he told me that , in his opinion, anyone needed an adapted car shoul qualify for this benefit so going by that statement, sounds like you should get it. Cheryl:-)
Yeah my car is already an automatic… but when my legs are bad, 1… I cant feel the peddles properly… and 2. I dont have the strength to keep my leg in the air… so I watch the speedo and see myself getting faster n faster as my foot sinks into the peddle and have to hold my leg in the air with my left hand!! Not exactly safe, so I just left it parked for a few weeks!! hand controls would be a gdsend, but I shoud imagine its expensive to get done yourself so I probably cant affrd it
Just as a bit of reassurance, everyone is not always asked to go for a medical. I have been awarded DLA at HRM and MRC and put in the Support Group for ESA in the last 6 months purely on the forms I filled in and the supporting medical evidence I sent. I sent a copy of every medical letter I’d received. I also put on the forms “on a really good day I can…, but more usually I can…”
I also joined Benefits and Works for £20 which gave stacks of useful advice.
Think about the questions first of all. Get an independent person to fill in the forms. It is not easy to write about the time you could not climb up the stairs and how you had to crawl into bed. Bad enough remembering it, almost impossible to write down the answer. Also its very difficult to get the correct wording
Take your time thinking about it and do try hard to remember the worst, maybe it was 6 months ago or maybe now. Try to find an MS group in your area then talk to them about filling in the form and if you are lucky someone there might help you.
Good luck, it is important but a horrible thing to do, I have 100% mobility and 50% carers.
Thankyou Sarah and Patrick. I think its just easy to do the brave thing and think ‘Oh I can manage if I…’ but I know I shouldnt have to and Ive always supported myself and worked etc etc so this time… Im not gunna let myself struggle on!
Yay! But if things get better does that mean I will get refused DLA if they have to come visit me??
