PSP Association
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PIP advice please for suspected dystonia and fibromyalgia


I wonder if anyone could give me some advice please...

My mum has been steadily becoming more and more unwell for the last 4 years. She can no longer move her head side to side or backwards so now she is only able to walk looking down at the floor. Her muscles are wasting away , her neck is crooked now and eating food can result in choking she also can't lift her arms above her head so struggles to wash and dress. Everything in the house is too high for her to get or to see and she's lost over 5 stone so now weighs about 6 stone.

She had to leave her job about 3 years ago due to ill health , which the doctors put down to depression!!! She claimed incapacity benefit I think it was and then after a period was nudged back to work. She could no longer do her business manager job so gad to take a job doing activities with dementia patients. She's really really struggling to continue doing thus , she gets so cold and us unable to get warm and has tremors/spasms in her neck where it tries to pull her head back which is heartbreaking to watch her in so much pain. She's really nig well enough to work but is worried that she won't be entitled to PIP or anything else. We're not really sure what she might be entitled to or how to go about it. She's in a total financial mess, she on,y works 3 dates a week on minimum pay and if doesn't cover the mortgage and has no money for food.

She's used up all her savings on chiro help and supplementing her income. Any advice anyone has will be really helpful

Thank you

2 Replies

Hi Lillie37,

I'm really sorry to hear how your Mum has been suffering, and battling on. I'm very new to this, as one of my friends was diagnosed only a few weeks ago with PSP. However, one thing we did find out was that if you do qualify for PIP, then it is backdated to when you phone up to start the application process - which is explained here:

The other thing we did was make a quick call to Turn2Us who can explain benefits to you. However, I also called our local Department of Work & Pensions, and they were also very helpful - it was them who suggested we get on and phone PIP application number.

Has your Mum been diagnosed with PSP? A simple letter from the Neurologist explaining the diagnosis is really useful in dealing with people such as finance companies when trying to understand whether they can help.

I'm sure when everyone else gets online you will get some more advice. Don't despair, it may be a rare disease but there are plenty of other people out there in the same boat trying to deal with it and they are a group of very kind and helpful folks.

Good luck and keep us posted.



Hallo Lillie37,

It seems that your mother is also struggling with getting a proper diagnosis. Sadly that is something we have experienced and many others. The GPs are usually worse than useless. You need to insist that your mum gets seen by a neurologist at the Hospital. I do not know where your mothers lives, but if she lives in Cambridgeshire I would suggest you contact the Neuroscience Department at Addenbrooke's hospital and make and appointment with Dr James Rowe. He specialises in neurological disorders.

If your mum suffers from PSP or CBD then another very helpful contact is the PSPA and they have issued on there website a Personal Guide to CBD and PSP which explains all the things that need to be done in order to provide your mum with the best possible support. And that includes things such as the attendance allowance from the DWP. Also your mum should be registered for NHS Continuing Healthcare. That will then also involve the NHS social care branch.

One of the typical issues with PSP is that the connection between the brain and the muscles gets more and more impeded. And that will result into tightness of muscles and eventual rigidity and pain. There is really only one solution for this: Physiotherapry / massage. Myh wife suffers from PSP and has been struggling with this issue. The doctors tend to prescribe pain killers, but they make the situation only worse and do not tackle the cause of the problem. Thanks to regular massage we have been able to get my wife off pain killers completely and her leg, shoulder and neck muscles get the kind of exercise they need to prevent rigidity and the wasting away.

Good luck Gerko


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