I was a physiotherapist, retired many,many years ago before I heard of PSP. Now I have PSP. I wondered whether any of you could tell me whether any of your sy.mptoms were stirred up by the jab .I never had any problems with the Flu or Covid 19 jabs before the diagnoses of PSP. I am new to this forum. I found the PSP helpline helpful by directing to this page. They said that they were unable to answer medical questions but could send me a book which I could pass on to my G.P, all about PSP.
love to everyone.
eilcod.
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eilcod
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My Mum has PSP and CBD, has never had any effect from the vaccines other than the same feeling off, sore arm like I do when I have them. But when she got covid, her legs stopped working, came back when she shifted. Xx
Hi eilcod, vaccinations have not feature in relation to PSP/CBD. The need for physiotherapy, on the other hand, has never been more important towards maintaining functional abilities, so much so that the PSPA holds online physiotherapy classes through Neuro Heroes. You are therefore well placed to maintain your fitness. As you have contacted the Helpline you will also have access to the website - a fund of valuable information. Please sign up to join the online support groups (there are mixed and one men only) and ask if there are local groups you can go to, for face to face support. There is a growing number of Link Volunteers (who have personal experience in caring for a loved one). If there is one in your area you could get home visit support. A great many GPs are ignorant of PSP/CBD so very important that your practice gets the PSPA booklet for GPs. All my very best wishes for you continued support.
Hi there Eilcod (that sounds a bit Welsh to me!). I am male 82, PSP diag 6yrs ago, mobility now compromised, but am active. At start of covid the NHS advised NO jabs for anyone whos had shingles or someting else (I forget!). I've had both of those, and I do not like to put unproven stuff in my body - so refused! I have since had covid twice, but very mildly. No intention of doing jabs now!
BTW I am doing the physio exercises with Neuro Heroes weekly (see David 750, above), and find them excellent, challenging but well do-able.
Hi there Eilcod (that sounds a bit Welsh to me!). I am male 82, PSP diag 6yrs ago, mobility now compromised, but am active. At start of covid the NHS advised NO jabs for anyone whos had shingles or someting else (I forget!). I've had both of those, and I do not like to put unproven stuff in my body - so refused! I have since had covid twice, but very mildly. No intention of doing jabs now!
Think I have already replied?......!
BTW I am doing the physio exercises with Neuro Heroes weekly (see David 750, above), and find them excellent, challenging but well do-able.
I had both the flu and COVID jabs last year - incidentally I’m due them again in about a fortnight. Whilst I wasn’t diagnosed till April this year, I had had symptoms for a few years prior. I’ve never had an issue with either
Mum had the covid and flu jab last year, she is about 6 years into CBD journey. She went down rapidly the following day such that I thought she had an infection (all mobility, communication and continence affected) and called out doctors. Wasn’t until after getting them out I remembered she had had the jabs day before. She improved the next day but I haven’t taken her for the jabs this year.
My husband had his jabs on Monday and within 24 hours, his symptoms were excabertated. He lost ability to walk, more frequently urinating, speech was impaired and sleeping most of the day. I’d heard about people with PSP enacting badly to Flu/Covid jabs but it passes in a couple of days.
My husband had both flu jab and covid booster last weekend, we've seen a bit of aches and fatigue as expected, but for me this is much preferable to a full-on infection - which we have luckily been spared so far. I'm aware that research keeps finding further evidence of immune system involvement in the development of neurological conditions - I still believe that this knowledge gives further reason to keep our loved ones protected against seasonal/air bound infections. Getting infected would stress the immune system far more than a jab could do.
my husband has advanced CBD. He has reacted very badly to every covid jab. He was still mobile when he had the first one. It floored him completely the day after he had it such that he couldn’t stand or move and he was out of it. Thinking it was a rapid deterioration of his condition I called 111 . He was taken to hospital and kept overnight - by next day he was back to his normal condition. The same has happened following each Covid jab since but now I know to expect it and can plan for it. He is wheelchair bound and fully hoisted now anyway so it’s less of an issue. (And by the way - he also worked on a turkey farm one Christmas when he was a student)
My husband was diagnosed with PSP in 2021. He has had flu jabs before and no problem until this year. (Do the flu jabs differ each year depending on what they think the next type of flu will be?)
His bed was saturated in the morning after the jab and had to be changed, his speech is deteriorating but the morning after the jab, he could hardly speak, his ability to move and stand with the aid of the mini lift was also affected. This lasted for a day. Thankfully he didn’t have the Covid one at the same time. We were advised to wait a couple of weeks while his body processed it.
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Sub -types of PSP
Sad? Devastating!
Awareness of PSP
Confused
