Psp hereditary

[Jdeeee]

So lost my partners nana her sister and brother all had Parkinson his uncle had psp now his mum has psp/dementia we got told it was not hereditary now I'm worried will my partner and my children get it, also worried about my partner as his father told him he was to blame for his mum getting psp as she was stressed and worried about her son when he spilt for his ex and he moved away and all the stress trigger psp is that true it get bring on psp

[honjen43]

Don't beat yourself up, Jdeeee ! Only time and research will tell if PSP (or CBD) are inherited. You must try and get a bit of 'you' time and a good rest (although I know both may be hard to come by). Take a deep breath and believe in yourself, you are doing the best you can with what info you have. Take heart and read what others say on this site! There is probably more knowledge here about PSP than your partner's father ever knew!!

[Jdeeee in reply to honjen43]

Thank you I have looked in to a lot of things I've been trying to support my partner at the minute I'm also helping with his mum so his dad can have time for himself trying to be strong for his family and him but finding things a bit hard knowing his dad is blaming him and having to bite my lip

[mthteach in reply to Jdeeee]

Jdeeee, I'm wit you girlfriend. I took care of my father-in-law as well. He passed about 5 years ago. My husband has PSP. My father-in-law had Parkinson's. He was 90 when he passed. My son, 30, has looked into whether in is inherited, and so far, we have not been able to find anything that said it is. I think there is a lot of people on here that would like to know if it is inherited.

[honjen43]

Certainly sounds like a 'epidemic' in your partner's family! Remember, his dad has seen all this before and must be very stressed to see the wife he knows changing in front of him. He will be experiencing every emotion! Under such circumstances we can all say things we don't mean to say, and hurt those near us! If he is comuter-literate, introduce him to this blog, or find who on the blog, lives near him. It may help if he knows others with same battle!

Doesn't help you deal with the thoughts he has initiated in you, but you may be able to help him if he will let you.

Does your partner have any signs of parkinsons or psp?

[honjen43 in reply to honjen43]

Haha! Meant to write computer-literate!

[Jdeeee in reply to honjen43]

Yes I know it's a very stressful time for him I see his struggles I have talked to him about everything and try my best to help him no my partner hasnt got any sign of Parkinson he's 37 his mam was only told she had psp 2 months ago but getting help for Parkinson for about 7 years that I know of she only 58

[Maxwell123 in reply to Jdeeee]

Do u get shaky hands with psp i have got the pill rolling tremor in my left hand

[Mnd0vrmnky in reply to Maxwell123]

Shaky hands are not commonly associated with Psp. That doesn't mean some ppl with Psp won't get shaky hands. The main tell for Psp is the mechanism for looking up and down starts to fail.

[Jdeeee in reply to honjen43]

I've talked to my father in law about this and he said he doesn't want to know about the things he has to face he would like to take each day as it comes chatibg about stuff will not change anything I told him it's a good way to let things out but he said no

[easterncedar]

I think it's been strongly suggested that in some families there is a genetic vulnerability, but it isn't necessarily determinative, that is to say not all people who inherit the gene will develop the disease. I have been reading everything I can on psp for five years, and I have NEVER seen anything to support the idea that stress triggers the disease. Forget that, and try to forgive the one who said it. People say all kinds of terrible things under stress.

Hang on. Life goes on, and we are here to help. Peace, Easterncedar

[NannaB]

If stress triggered PSP, we would all have it. I have 3 sons and 3 grandsons ( plus 1 who isn't a blood relative). My first thoughts at diagnosis was, does it run in families. I was told probably not but in some families, more than 1 person has been affected. OK, it may happen but I'm not going to spend the next 20+ years worrying about something that may never happen and if I knew they would get it, there is nothing I could do to stop it.

As others have said, your partners dad is under a lot of stress and appears to be using his son to vent his feelings. He needs to find a reason his wife has this horrible condition and is putting the blame on his son. Seeing your children having problems, whatever their age, does cause stress but unfortunately he is the only one who can change this feeling he has. I have been blamed for things by my mum and it was very upsetting but in the end I decided it was her problem, not mine. Eventually she realised she couldn't hurt me and it was her losing out by having a negative attitude when we called to see her. He will need your support and you won't want to give it he continues with the blame.

Keep biting your lip and let your partner try to do the mending but hopefully he will not blame himself.

All the best.

X

[Jdeeee in reply to NannaB]

I talked to my father Inlaw about this and he said yes but if u have the gene then upset stress triggers it as his brother in laws started around the it he spilt up with his wife and his mother in laws started around the time her husband played aways and so on really don't think I can change his mind on where he's pointing the finger I know this is a very hard time for him it is also hard on his child and making him feel like he's to blame it's just so sad

[Amilazy]

No genetic evidence at present but then it is only recently that PSP has been recognised more widely among the medical research community. There are studies now in place but on whole still small scale. If you are in the UK contact PSP research group in UCL in London, who have a questionnaire which does log familial similar symptoms such as Louis Bodies Parkinson, PSP etc. They are trying to find out if there are common environmental factors and or family links so they can track back to a source factor/trigger.

The problem is that PSP, as it becomes more commonly diagnosed, is being recognised that it has different types itself hence why we all have slightly different experiences same issues but with different severity and time scale. The only standard is the stress on the carers.

Best wishes Tim

[Mnd0vrmnky]

Look at 23andme, my fam have all had saliva samples tested and are awaiting results.

Also, check out ethnobiology.com they have found the toxin BMAA in water supplies. They reckon if you stop making certain amino acids etc as you age, they can be replaced by things like BMAA. They think BMAA replaces the serine in the amino acid chains that form membranes. For Psp it's in the brain, for ALS it's the muscles/nerves. The BMAA creates weak spots on the membrane that allow for problems.

It's early days but they are trialing serine now on ALS patients and have started phase two safety trials.

It's confirmed that it is connected to parkinsons, Alzheimers, Psp, picks, ALS, and more.

12/12 lakes/lochs/reserviors tested in the uk were found to have BMAA present. So it's in the water.

I think this may be only one way to develope these diseases, there maybe more.

[Mnd0vrmnky in reply to Mnd0vrmnky]

Ethnomedicine are the guys that found the treatment that's stopped ppl dying from hiv. He found it in tree bark.

This time it's the toxin that comes from nature,min the form of toxic algae. (Cyanobacteria)

[Jdeeee in reply to Mnd0vrmnky]

Saliva samples test ? I've been told there's a blood test but don't know much about it my mother in law was asked if she wanted a blood test

[Mnd0vrmnky in reply to Jdeeee]

It not specifically for Psp. It's a general health kind of thing. I'm not sure how in depth it is or if it has the ability to tell if Psp is present.

[Mnd0vrmnky]

The algae is what produces the toxin.

[Susan789]

Jury is out on genetics, could be, but it is also possible that it is environmental...there is a cluster in France where PSP is linked to industrial metals. Many people in the area have it, related and unrelated families, and not everyone in each of the families have it. Just because it runs in families doesn't mean it is genetic. If they were all exposed to the toxin at a time they might have been susceptible, some of the people may get it...and some people may never get it.

And stress is indicated in almost all diseases, it is often a trigger, certainly does no one any good. That being said, stress is part of life, and each individual has to come to terms with it themselves, no one is at fault for another adult person's stress response, not even a mother's. If I stress over my children, that is MY problem, and not their fault, they are just living their lives, and lives are messy. It is also possible that the mother was overly stressed BECAUSE she had the disease...my mom (later stage psp) can get very agitated over things now, that would not have bothered her years ago....and in hindsight, should have been a warning sign. She was always very calm and easy going, with low blood pressure, and all that changed in the couple of years before she first had classic psp symptoms. The important part is not worrying about what might or might not have been, but focussing on what is now, and trying to find joy in those few moments that are good each day, and not engaging in negative conversations that are pointless. With PSP that past and the future are largely irrelevant, you can only live for the moment.

[NannaB]

My sentiments exactly Susan789. If I worry about family or friends it is my problem not theirs and up to me to deal with it. If I can help, I will and do, but they must all live their own lives and worrying doesn't solve the problem but creates more.

When things are tough here....daily....I find myself singing, "Accentuate the positive, eliminate the negative, latch on to the affirmative and don't mess with Mr in between" by Bing Crosby in White Christmas. My dad would sing it to us if we were upset as children and it's implanted in my brain. Thanks dad.

X

[easterncedar in reply to NannaB]

Love that song, although I really got into it with Dennis Potter's TV weird and wonderful show "The Singing Detective".

[NannaB in reply to easterncedar]

I only saw that once. Weird was correct but never saw enough to see if it was wonderful.

X

[Doglinton in reply to NannaB]

My dad used to sing it to us too !

Not always easy to follow - - -

x

[NannaB in reply to Doglinton]

True!

[mthteach]

OK guys, I am a research addict. I had to look up 23andme. This is what I came up with.

scientificamerican.com/arti...

[mthteach]

I went to ethnobiology.com/org. It looks good, but when I typed in Parkinson's PSP, there was no journal to be found.

[Mnd0vrmnky in reply to mthteach]

ethnomedicine.org/neurodege...

No journal, but confirmation of the link between BMAA and Psp, ad, PD, ALS etc