I have been recently diagnosed with PSP

[MullerRice]

I was recently diagnosed with PSP which explains the many falls I have been having. I have had problems with imbalance/falls for around 2/3 years, and have problems speaking (I sound as if I'm drunk!) since November 2023, but, so far, I have no problems swallowing or memory loss (it has always been bad!). I used to run a website, but have had to give this up as I make so many mistakes typing despite typing ever so slowly. My handwriting has also deteriorated.

[easterncedar]

Sorry for your diagnosis, It is in itself an awful shock, but knowing can help you take action that may help, including PT advice and training to prevent falls and SALT consult to get exercises to help with swallowing. Both of these really worked for my sweetheart. He had good results with LSVT Big exercises, especially, which were developed for Parkinson’s symptoms. His swallowing stayed reasonably strong with some simple actions recommended by the speech therapist.

I hope you can access something like these.

I hope you have support around you, but this site is good to have, too. There is a heap of information and there are people here who understand and sympathize. Ask anything.

[Bergenser]

Sorry to hear this disease has come into your life. Getting the diagnosis is still a useful step so that you can access the relevant information and support. I expect it can be overwhelming, my husband definitely found it difficult to get reconciled with this diagnosis. While it is useful to make preparations for the problems that are coming down the line, it can be useful to focus on what you still can do and what activities you enjoy. Please stay positive.

While research is sparse, there is plenty of anecdotal evidence and case studies suggesting you can improve the outlook with exercise. There is plenty of advice about healthy eating (I would recommend supplements like magnesium and vitamin B1 Thiamine).

Sleep quality can be a huge problem and worth dealing with in any way you can.

You (or your primary carer) would be well advised to start keeping notes about "everything" to keep track of symptoms and interventions.

Assuming you have dealt with questions like driving, and Lasting Power of Attorney, don't focus too much on PSP. Life can be good even with hard days. Hope and hugs 🌻 🫂

[Bristolgirl in reply to Bergenser]

yes excercise! I do tai chi!

[Garderer in reply to Bristolgirl]

How do I do exercise if I'm wheelchair bound

[Bergenser in reply to Garderer]

Understandably difficult, but many possibilities. The PSPA had a ballet class at one of their events - that was fantastic - if you have access to a therapy pool there are water aerobics - or local groups might do sitting yoga. Some exercises are simpler like throwing and catching a ball, rolling the ball down your legs to kick it etc. Massage balls can be moved about with bare feet to stimulate the small muscles in the feet and calves.

My husband currently has one exercise where he leans forward in the chair to pick up an object from a box placed on the floor to one side, and has to place it in another box - all good for some of the core muscles. The objects have different weight/shape/textures so the exercise also stimulates the fine muscles in his hands and wrists. Motivation can be the hardest thing, so keep it fun. Play some music and "dig it" with your hands in the air. Nobody is watching 😉

[Bergenser in reply to Bergenser]

I forgot to mention the "cycle while sitting down" exercise for a bit of fitness training

Pedal exerciser on a non-slip mat

[easterncedar in reply to Garderer]

There are lots of sitting exercise routines, very safe and good for muscles, and vascular, heart and lung health. I enjoyed doing them with my partner.

[David750]

Hi MullerRice, in addition to the valuable advice listed in these posts to you, as you are in the UK, please register yourself with the PSP Association (pspassociation.org.uk) and phone the Helpline (they helpd me when looking after my wife with PSP). They will be able to advise you of the support there is available in your area. There's a growing number of Link Volunteers (who have personal experience of caring for a loved one) who, if there is one in your area, can visit you at home, to better understand your situation and discuss support available. All my very best wishes

[MullerRice]

Thanks for all the replies.

easterncedar: I agree, having put a label on it is actually a weight off my mind. My wife and eldest daughter (who is living with us) currently give me all the support I currently need. In fact I feel like a fraud, as I appear to be a long way off from disability. I am yet to be in touch with a PT or SALT, but I already recognise the importance/benefit of not only this forum, but also the PSPA.

Bergenser: Thanks for the advice. Have dealt with driving, and LPA is in hand.

David750: I've already registered with the PSP Association, thanks, and am certainly impressed with them.