Hi newbie here so please be gentle. I was recently diagnosed with PSP

[Scotty1234]

I'm only 66 and have had no real issues up till now - speech maybe rather quiet and slurred. But the last couple of days have had a really sore right foot particularly first thing in the morning. Is this a typical psp thing or is it something else? My main problem is that I don't know what the future holds - any advice appreciated Regards

[timbowPSP]

What a bummer Scotty. I had mine 6 yrs ago aged 76. Since then have kept a record of a 100 and one items of info, advice, etc. Happy to send you my latest 'Update' if you wish. Just need ur personal email, as too much to include here. PSP- Please Stay Positive, and my v best wishes. TimbowPSP

[Scotty1234 in reply to timbowPSP]

Timbow many thanks for your reply. My email is bsuttie@blueyonder co.uk thanks again Brian

[timbowPSP]

Attempting to send it, so anticipate soon ....... Tim W.

[timbowPSP in reply to timbowPSP]

Sent today, hope u get it OK. Tim W.

[LuisRodicioRodicio in reply to timbowPSP]

[e-mail]

[Bergenser]

My husband was diagnosed June 2021 at age 66, at that time he had quiet/slurred speech, a few unexplained falls and the occasional laughing or crying for no reason. Starting on Co-careldopa, his symptoms would disappear for 4 hours at a time and he had a good 15 months where the disease didn't progress much - we could travel and have long conversation and make plans (including moving to a bungalow). The first major setback came as result of a fall - he broke his heel and suddenly needed help/care day and night. Since then, there has been a clear progression - sometimes plateauing or even improving on the short term, but always in hindsight small losses and new symptoms gradually worsening.

PSP can explain a very wide range of symptoms - the pain in your leg might be caused by PSP - but PSP patients get unrelated illnesses and symptoms too so it may be useful to get things checked out with GP or specialist - anything non-PSP might be treatable...

I would suggest you don't worry too much about what the future holds - most PSP patients go through a similar set of symptoms but not necessarily in the same order or at the same speed. Please stay active and positive and enjoy life to the full - and look after the people around you who will be your allies along the way.

With hope and hugs 🌻 🤗

[MyDad1]

Sorry to hear, stay strong. 👍

[Bluey48]

that might be gout? Especially as early morning when the acid has built up in the extremities.

[Scotty1234]

Thanks Bluey. Think you may well be right - good news is that it's much better today

[wear1947]

Welcome to the club, this site helps a lot. Look in the history of the site for Rodizio Rodizio's contributions. There are 6 variants of PSP, It is important to know which one you got with the help of your GP or neurologist to be able to plan your life and that of your loved ones a little, to have an idea of ​​the stages of intensity of care, Rodizio lives in Spain, I live in Argentina and our loved ones suffered or suffer from PSP or CBD (they are related). Stay strong and lucid. My sister began with the first symptoms similar to yours. At 64 years of age, she is now 80 and since February 2020 she has been in a nursing home, in a wheelchair, almost without seeing with the indispensable assistance of a physiotherapist and kinesiologist. You will also have to adapt your house, place handles, remove carpets. I have to emphasize that physical and intellectual activity are essential, do not sit in front of the television. Good luck. Elena

[Cinephile]

Dear Scotty, sorry to hear about your PSP diagnosis - I’m sure you will have your own approach and way of dealing with the challenges PSP poses and I’m just sharing with you my experience as my husband’s main source of support.

My husband was diagnosed with PSP six years ago - his progression has been steady and during that time we have kept as active and involved in life as my husband’s condition allows.

As soon as my husband was diagnosed we put in place a LPA for health and welfare and finance and property. We were put in contact with an occupational therapist who assessed our home for adaptations such as grab rails, chair raises and made our home clutter free, and removed all obstructions such as rugs and excess furniture. My husband now lives downstairs, has an NHS hospital bed at home and we already had a downstairs shower room and toilet.

We attended local PSPA meetings at the beginning - the best piece of advice we received from the group was to get a referral to the living well centre at our local hospice - their support with access to therapies for my husband, social worker, counselling for me and the support of a consultant in palliative care has been invaluable.

My husband applied for and receives a personal independence payment (PIP) - gather as much evidence as you can as to how your health conditions affects every day life on a bad day and be prepared to take your case forward if you are turned down initially. This year we put in an application for CHC funding and my husband opted to receive a personal health budget to pay for a personal assistant to support him for some of the time during the day, with access to respite for me. This has been a life saver.

In my experience the key healthcare professionals are your GP or hospice for referrals to other healthcare professionals, your neurologist (preferably a specialist in movement disorders or rare dementias), specialist neuro-orthoptist (my husband is now registered severely sight impaired), community neuro-therapy team, speech and language therapist to assist with maintaining your speech for as long as possible or supporting alternative methods of communication and monitoring safe swallow.

My husband now has Botox injections to dry up troublesome saliva, we attend our local Neurotherapy centre for one to one physio therapy and also participate in online Neuroheroes exercise classes sponsored by the PSPA.

I hope my experience is useful to you.

All the best

[LuisRodicioRodicio]

Hi Scotty 1234!

The email should be?...:

[e-mail]

hug and luck.

Luis

[Richard33]

Scotty,

Ruth had a sore foot at the outset - caused by dystonia. I think it is a common symptom with PSP / CBD. It was very painful, but the neurologist gave her Botox in the foot every 3 months for a year and then it disappeared for good. So it would be worth exploring that.....

Richard 🙂

[Scotty1234]

Just wanted to say a huge thanks for everyone that responded. Yes Luis that email is correct and I have had mail from you so that seems to be working fine - thanks again. And huge thanks to both the GP at the local medical practice and the neurologist I was referred to - it's been great to get the help!