Rates of PSP in Maghull, Liverpool - PSP Association

PSP Association

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Rates of PSP in Maghull, Liverpool

Dolly9to5 profile image
20 Replies

hi,

My father had PSP , at the time of his diagnosis two other people who lived in neighbouring roads - also got diagnosed with PSP (similar age ) I’ve always thought it was very coincidental that 3 people similar age , who had lived there for a very long time had the same rare illness.

I would like to know / obtain data for area , anyone know how I could obtain this ?

For anyone reading this who might be from Maghull / have PSP or a family friend with PSP.

Feel free to contact me as I would like to build up a picture .

Thanks in advance

20 Replies
AnneandChris profile image
AnneandChris

Hello there

A former colleague of my husbands, who also lived in the town we retired to was diagnosed earlier than my husband. I mentioned this coincidence to our GP at the time, who had recognised the PSP symptoms. He very wisely advised me that I had greater priorities which would need all my energies. Oh he was so right!

We do not know how rapidly the PSP will progress so please concentrate on the here and now, spend time with your Dad and make wonderful memories with him. We had 4.5 years together after a rapid diagnosis, 4.5 years of precious time. The memories of all the trauma are now fading and I'm left with memories of our wonderful life together over 55 years.

Hope this helps, keep on keeping on, it's a tough journey. x

Dolly9to5 profile image
Dolly9to5 in reply to AnneandChris

thanks for your post xxx your advice is spot on thanks - however my dad passed 3 years ago so it’s only now that I have the time to think about the coincidence . Did you live in maghull ?

AnneandChris profile image
AnneandChris in reply to Dolly9to5

Hello there

No we live in semi rural Gloucestershire. I know that there are some rural communities where the incidence of PSP is higher than others and a possible connection to agrochemicals. However this isn't applicable to my husband who was an aeronautical engineer specialising in hydraulics and fuel systems. I lost him Christmas 2019.

Sending hugs x

Dolly9to5 profile image
Dolly9to5 in reply to AnneandChris

thanks for reply xxx sorry to hear he has passed xxx sending lots of love , you must miss him greatly. My mum misses my dad terribly - my dad passed in October 19.

LuisRodicioRodicio profile image
LuisRodicioRodicio

Yes that is rare. It's worth following that trail!!

Hug and luck.

Luis

Daffodil41 profile image
Daffodil41

My mum isn’t in the area (and has CBD) but the consultant we saw said that he finds more cases than most as he knows what to look for and makes the correct diagnosis. If the GPs and consultants are aware of the condition then it’s possible that more cases will be known about.

I think we all try to find answers as to why our loved ones have been affected by these awful diseases. I hope you find some answers

Dolly9to5 profile image
Dolly9to5

thanks for your reply , you’ve definitely made me think 🤔 thanks for your response . Sending love to you and your mum xxx

messier profile image
messier

It is interesting. Environmental factors play a part in quite a few diseases and there is definitely little known about the causes of neurodegenerative diseases. My mother has CBD which started probably in 2016-17. My father died of Multiple System Atrophy in 2014. It has lots of similarities to PSP and CBD. They lived in Aintree in Liverpool in the late 1950s/ early 60s. Is that the same time period as your father? But they both also lived in various parts of the world - some of which were pretty polluted.

Dolly9to5 profile image
Dolly9to5 in reply to messier

thanks for your reply and sorry to hear your mum has CBD xx another awful illness.

My dad was born in 1943 and grew up in Wavertree (South Liverpool) they moved to Maghull in 1973.

I would love to know what environmental factors may have caused this illness. The PSP association have sent me some research documents . I going to check them out and see where that takes me next .

If anything crops up I’ll keep you posted , take care Kris

gillyx profile image
gillyx

Hi, my Mum age 69 lives in Maghull and was diagnosed with PSP last year

Dolly9to5 profile image
Dolly9to5 in reply to gillyx

Thanks for your message . At this stage I am trying to pull together some data for the Maghull . I’ll try and message you privately and if you are happy to share some information with me . Such as , area of Maghull , how long you have lived there xx

gillyx profile image
gillyx in reply to Dolly9to5

yes of course, let me know if you would like my email address x

Dolly9to5 profile image
Dolly9to5 in reply to gillyx

I think I have just sent you message over the chat function - fingers crossed xx

Cappy11 profile image
Cappy11

You very well could be right.

So far causes of PSP-CBS are either genetic or toxin exposure.

My affected family member and a couple others that we know with PSP grew up in agricultural environments with largely unregulated chemical use. And industrial work environment at times.

eaglet profile image
eaglet in reply to Cappy11

I would agree to look at toxins such as use of paraquat or maybe something in the drinking water.

Dolly9to5 profile image
Dolly9to5

Thanks for your post xx, sorry to hear about your family member with PSP. Since posting last Sunday , I have sadly discovered another person diagnosed with PSP who lived at the top my Dads road around the same time . That now makes four people in v close proximity ( neighbouring roads in Maghull) Maghull has population an approx 20,000 people .

I’ll continue to do more research and at the very least share with the PSP association in the future .

Julieandrog profile image
Julieandrog

Hi, i have wondered with the realisation that MND and dementia with sportsmen is a result of frequent assault on the brain why that link has not been given with PSP. Certainly with Rog he played semi professional,into his fourties , constantly heading and tackling.

MRSYafffle profile image
MRSYafffle

Sorry to hear about your dad, I'm in Maghull and my mum has PSP and is 81 years old and is sadly in a care home now but lived in Fazakerley for over 50 years. Who knows the cause of this awful illness. Dreadful time she is having , very bad today. I did see something about chornic pain and a possible link sometime ago but that was a bit of a hunch on a thread.

Dolly9to5 profile image
Dolly9to5 in reply to MRSYafffle

Sorry to hear about your mum. I hope she is having a better day today 🤞🤞xxxx

Zerachiel profile image
Zerachiel

hi, not relative to Maghull but this may interest you.

ncbi.nlm.nih.gov/pmc/articl...

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