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PSP Association
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CBD

Hello all.

In 2000 we moved to a new development we stayed there for 2 years. My husband is 55 and diagnosed with CBD this year.

I recently found out that a neighbour who lived a few doors away died of CBD a few years ago.

There is so much of the unknown for such a rare disease to affect two people who lived doors away.

I wonder if the researchers look into situations like this in terms of environment, lifestyle, genetics.

Does anyone else have a similar experience.

Joy

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Hi joy73

My dad has cbd was diagnosed about 1yr ago we have not had the experience of knowing someone close that's had cbd, as we are in nz there is on known cbd suffer who lives on the other side of the country. We are all here to help you with advice and knowledge of what we have experienced,

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As far as I am aware my wife is the only person in our health authority who has CBD there have been quite a few with PSP.

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Hi kenh 1

Which authority are you with please.

We were north west uk

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We are in Southport, I used to attend the Liverpool PSPA group and met other CBD patients and carers there. But far less than PSP.

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Ken I knew someone from the site whose husband had PSP, also from Stockport. She doesn't seem to come online anymore though. I would agree there appear to be more with PSP but suspect there are more than we know as they are being misdiagnosed. Felt that from the first week I was on the site! I immediately felt there was something wrong. I am sure of it now!

Marie x

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I agree Marie. So many unanswered questions. X

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We are from Southport not Stockport, towns which are 35 miles apart and as different as PSP is from CBD. I don't suspect people with CBD are being diagnosed as having PSP.

There are just more people with PSP than with CBD I could see that at the Liverpool meeting.

Ken x

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Thanks kenh 1

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Ken, apologies. I misread where you are from.

Marie x

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Hi we live I. Leyland and mum hadCBD I went to the Lancaster group and was only one with loved one having CBD others were not aware of it and symptoms it would be so good to meet families with same issues around CBD feel very isolated apart from this group advice. X

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Do you care for your mum

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As far as I am aware.You are the nearest person to us who is living with CBD. I have read somewhere on this site that there is a way of sharing information without sharing it with the whole site. I.e I could give you our email address and shareissues.

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Can you please explain the difference between PSP and CBD

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I have not researched PSP. You could Google it

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Thanks dear!

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I certainly recommend finding a support group Liverpool group meets at the Liner hotel which is at the back of Lime St station. Very helpful. I can't get there now as my wife is housebound and getting care cover is difficult.

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Joy

Another living in the NW region. Although to look at BBC News we only exist in NW occasionally! I live in Cheshire.

Anyway my husband had PSP. He sadly died in 2017. I had been told by someone about the meeting in Liverpool but for us it was too late. Had nobody to care for him either. So go while you can!

Marie x

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So sorry Marie x

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Also from NW Warrington - lost my amazing dad to CBD Nov 2016. It’s more common that people think. We met a few from Cheshire, NW etc

It’s such an awful illness :( so glad dad is at peace but I do miss him every day ❤️

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So Sorry xx

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❤️❤️❤️

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Welcome to the site. I'd check to see if there is a PSP/CBD support group in your area. If there is it may give an indication of how many people in the area are affected with the disease.

Ron

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Thanks Ron

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Hi, We live in the US, near Las Vegas NV and I don’t know anyone else who has CBD. I wonder sometimes if the disease was triggered by being under anesthesia for a long period of time. My husband had surgery back in 2005 for a neck injury and he’s never been the same since. I feel fortunate though bc he can still function (for the most part). Did your husband and/or neighbor have anesthesia at some point? Too much is unknown for sure!

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My wife has never had anaesthetics throughout her whole life she is now 78. My own theory about these diseases is that we are living longer.

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Hi SewBears

I don't know and of her history unfortunately. My husband hurt his back. He had a huge bruise visible on his lower spine and has a slipped disc. He became ill after that.

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My husband has PSP. We live near Toronto, Canada. I only met one woman with CBD at a PSP support group. I can't go anymore unfortunately. My husband was diagnosed following a total hip surgery.

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Hello Joy,

My husband in Vancouver Canada had CBD. We know of no-one else close to us who had/had it, although there are neighbours who have had other Neuro diseases; AD, PD, MSA etc...I guess compared to other urban areas with a high population of older adults, the statistics seem"normal". My husband was of Norwegian heritage, and wasn't exposed to anything more toxic than one diesel fuel spill once in his life, and a period of time when he fiberglass-ed a boat repair... No odd results following anaesthesia for a surgery in the '90s...

Who knows.. Maddening to wonder about it, isn't it??

Anne G.

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It is maddening and frustrating. So much unknown, I would be very interested to know what they do know

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What about mercury?

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Amalgam in teeth ?

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Hi I think in trying to understand we look for a trigger to help us process what is happening.

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I was diagnosed with CBD about 2 years ago. I live in Suffolk UK and have never found anyone near by with the same problem. If anyone knows someone in East Anglia with CBD I would be interested to know and perhaps make contact with them. As my horizons shrink it would be good to have contact with a kindred spirit or their carer.

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How old are Val if you dont mind me asking

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I was 70 in September and I don’t mind you asking!!

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Oh yes same here

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I wonder about the connections also. My husband was stationed with the Air Force in Guam years 1972- 1973 has anyone else been there? You read a lot about Guam and PSP for the local people.

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Thats interesting x

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CBD and the likes are caused by antipsychotic medications

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I’ve never take any antipsychotic drugs in my life

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We have never had antipsychotic medication x

What's your experience?

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Neither have I and I have CBD for no reason I can think of.

Jeanettex

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My speech therapist told me last year that there was a lady who lived about two miles from me who also has CBD.

She was diagnosed before me but I don't know when. I sometimes go to the sue Ryder drop in centre at the hospital and I haven't seen anyone with my condition. My consultant said last year that alot of people don't even go the doctor and are never diagnosed. He was aware of only a handful of people in our area. Jeanette xx

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Its so so sad x

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There was a study done , I m sure I read it on here or the psp assosiation magazine a year back , 1 of the only slight patterns found was growing up drinking well water . Me and my brother think my dad’s very poor sleeping habits for yearrrrs hasn’t helped ? The Tau is normal cleaned from the brain when we sleep in a healthy brain . Dad has CBD diagnosed about 3 yrs now , from Derby , I know of 2 others with PSP

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I begin to see why some studies posit that snoring leads to neuro problems... poor/interrupted sleep leading to inefficient cleaning of tau from the brain?? Hmmm.. Hubby was a snorer....

Anne G.

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I would be willing to bet that possibly the neighborhood or some surrounding area could have been a waste dump.....CBD is so rare that is too much of a coincidence, which I don’t believe in anyway!

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I have not known anyone, personally, who has CBD (like my husband). I do wonder, sometimes, about herbicides. He was in the military, trained in infantry, and had substantial exposure to outdoor environments where herbicides were used. Really need some epidemiological studies on incidence of CBD and PSP to begin to hone in on common denominators.

Marilyn

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Definitely x

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