My mum died in 2022, having been diagnosed with PSP in 2020. She had originally been diagnosed with Parkinsons, I think around 2017. My grandmother, who died in the 1970s also had a diagnosis of Parkinsons. Mum's consultant at the hospital said that it was very probable the my grandmother also had PSP, they didn't know about it back then. I'm 63 and am waiting for an appointment to come through to ascertain whether I've recently had a silent stroke or if it's the start of PSP symptoms. I think the latter will be quite difficult to confirm as the early symptoms are so like those of other conditions.
Has anyone else had any experience of more than one family member having PSP?
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Blacksheep143
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My understanding is that at this moment in time no scientific study has been able to identify a genetic link that says PSP can run in families. That said I believe neurological issues can run in families as my husband had PSP. His brother had MND, his mother had Alzheimer's and his father had a stroke. All different conditions but all related to deterioration of the brain.
I believe it’s incredibly rare to find more than one person in a family with PSP.
Thank you. My uncle (mum's brother) also had MND. His children are wondering if he was misdiagnosed as his symptoms were so similar to mum's. I'd gladly take part in research trials to help find out more about this awful disease.
From what I've read, the incidence of more than one family member having PSP is extremely rare. However, there's a slightly increased incidence of PSP found in families where parents or grandparents have had a diagnosis of Parkinsons. Note: This correlation is very small , but statistically is greater than for those lineages where earlier generations did not have a known hx of Parkinson's. This finding is actually understandable considering that PSP is of the group of "Parkinsonian Movement Disorders".It would be quite a stretch to connect what is going on with you to PSP. We humans typically have any number of lifestyle factors that we can change for the better in order to improve our health and our health outlook for the future. That's actually a really positive thing to know !!
Hi again Blacksheep , Hoping that when you get to speak with a very qualified neurologist that they will be able to shed more light on what you're experiencing and also about the incidence of genetically linked diagnoses of Parkinsons. (Rare, but can happen). Maybe an MRI could be helpful ?
Fingers crossed fthat this is not the case here ❣️❣️
I know there is interest in researching any possible links but I was told none was proven yet. My husband was diagnosed with PSP June 2021. His mother was diagnosed with "Atypical Parkinson's - possibly Richardson Steele" but as she lived 30 years with the condition this was cast into doubt, and after she died it was confirmed as "just PD". Still this family history was useful in reaching a rapid diagnosis for my husband's symptoms and he's been seen by the same clinic that monitored his mum's condition. From Linda Ronstadt's documentary "the sound of my voice" it is mentioned her grandmother had Parkinson's Disease and that her grandfather was dedicated to trying to get a treatment and cure for Parkinson's.
Still, with Parkinson's becoming quite prevalent, it might be a very slight correlation and not a genetic link.
The "Clinic for Disorders of Movement and Cognition" at Cambridge are involved with several research studies. In a very early stage it can be easier to get admitted to studies, particularly for the good (disease modifying) trials. If you live within a reasonable distance from Cambridge (or London) there should be many options. Some research studies recruit nationally - there are only so many PSP patients so they are really happy with people volunteering to take part. My husband took part in a drug trial and we both believe we saw some benefits from it.
Hello, my mum is registered with the PROSPECT research based in the uk. There is info on it on the pspa uk website. They are looking into the genetics of Parkinsons, psp and cbd as part of their study. If you get a diagnosis of any of these you'd likely eligible. It's observational, so no treatment on offer So sorry to hear that your family's has been affected.
Hi Blacksheep, My husband is in the late stages of PSP and his cousin died of it last year. His father died with PSP symptoms but as you said, in earlier times they might not have known what it was. Wishing you all the best.
I suggest dont focus on PSP, as that can drag on you for ur whole life.. As my Doc said recently 'make hay while the sun shines'! (You realise PSP means "Please Stay Positive"?)
I am 83, PSP diag 6-7 yrs ago and still fairly well functioning ..... but not driving, so that'sa bit limiting.
I can send you my hints and tips list from 6 rs experience if you wish but need ur personaal email-adress to do so pls, as too bulky for this platform.
PS There's a great `youth hostel in NZ called `the Black Sheep......... Recommended!
Seems the most common is richardson-Steele, and `Iam probably with PSP-Parkinsons, the slowest developer of about 10 variants. Just for ur info! Black Sheep's aslo an excellent Kiwi dark beer! Time to go travelling? TimbowPSP xx
PSP diseases are believed to have a genetic cause which is not inherited, with the possible very rare exceptions. Familial diseases are inherited diseases. Only 5% of all cases of PSP are familial
I play a comment from Kevin_1 (08-2019):
“PSP and CBD are not inherited. There was one small study that thought it identified 'clusters' of families who had a higher than the normal rate of this group of illnesses. However even their study showed that it was exceptionally rare and it was a pilot study with all of the inherent accuracy issues which such small studies suffer.
The research is very clear, It is not an inherritted condition.”
I am transcribing the symptoms and their appearance over time in our case in case they are useful:
My wife was diagnosed with PSP-RS in 2015. Before to be diagnosed the first symptoms showed up in March 2012 as: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) from March 2010. During the period 12 to 15 years before the first symptom falls were relatively frequent: around 10 occasions, two of them serious and many inexplicable.
The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did NOT confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.
My wife passed away in September 2020
One of the most typical symptoms of PSP, which is the tendency to fall backwards, did not occur in our case.
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What is PSP?
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Our battle with PSP
