Don’t know what to expect

[AWonderfulLife]

I was diagnosed with PSP and CBD in December 2020 . I haven’t had much support from the medical profession, and don’t know what to expect regarding end of life care. I started to have symptoms about 4-5 years ago and my condition is quite bad now, with sight problems, extreme tiredness, and frequent falls due to loss of balance.I have lost the use of my left hand because of alien limb syndrome too!

[MRSYafffle]

If you are in the UK check out the NHS website for information regarding what help is needed. There's lots of different disciplines involved so try to get a point of contact. Ask for a care plan, you should get attendance allowance to help with expenses. The CAB are good if you're on the UK. Most of all take care and if help is needed, reach out xx

[Willow_rob]

You need to get support urgently and your first point of contact should be your GP who should steer you towards the District Nursing Team, Occupational Therapy and Hospicecare. Hospicecare were brilliant in helping get what my wife was entitled to. PSP is an unpredictable illness and no two cases are the same. Rates of progression vary considerably. Do not think you can "go it alone". I supported my wife for two years on her "journey" and I advocated for the support she got. You need someone to do this for you. Do not accept "Coronavirus" as an excuse not to support you.

[AnneandChris]

Hello there

You don't say where you are. If you are in the UK please point your GP towards the PSPA professional website where there is a great deal of information. There is also information for patients and carers.

I agree, your GP should put you in contact with District nurses, frailty team for falls, OT and speech therapists. The help we had from these was invaluable as were the paramedics called in for major falls.

There is a huge range of equipment available from the NHS.

On a personal level there are other things to be done whilst you are able. Lasting power of Attorney for both health and welfare and the financial one too. So you and your loved ones know what's what. There is also a document you can get from your GP to be completed by you and him which gives medical professionals instructions as to what you want, from memory this is called an Advance Directive.

I hope this helps you and I send my best wishes to you.

Anne

[Aprilfool20]

Hope you get the help you need. I was diagnosed with cbd in 2017 and told to check out the internet for details!!without the advice of this forum and the local support group I don’t know what I would have done. Gp had never heard of it . My new consultant was a research fellow at addenbrooks where I helped with research. Now been diagnosed with MSA still not much help from nhs. Have to push for everything. See consultant once a year but have neurology nurse phone number if any problems.

[Cuttercat]

If you are in the US get in touch with your neurologist, then look at the three best hospitals regarding PSP. LA has a specialized section as does Mayo Clinic. I would go to one of these institutions to have them assess so you can anticipate what the future brings. We dallied around and the PA didn't do anything until I asked for the doctor, then things progressed. Unfortunately you have to be proactive or they let you fall through the cracks. Also PSP association in New York. Call them for info, newsletter, support groups, etc. they have it all.

Best of luck our new friend.

Cuttercat