Is there a common factor?

My daughter and I have read some articles suggesting that toxic chemicals can be a contributing factor for psp. My husband was a petroleum engineer all his working life and was in contact with various chemicals on the oil rigs. He also smocked for many years. My daughter keeps asking me if there is a common factor here among others with psp on this site.

[Hidden]

I mean he smoked for many years!! I swear I did not write smocked!?!

[Chris_F in reply to Hidden]

Ohhhh yes you did

[Lieve]

I'll give you my dad's background to help compiling info - he was a teacher all his life (math/physics - not much contact with chemicals) - then he got involved in nature walks, guiding, research... He had TB when he was much younger, smoked cigars up to his early 40s I think, not heavily. So little to go by that I sometimes suspect it's the microwaved food that did it! And sometimes I blame the pesticides in the fields he walked through... who knows?

[Hidden in reply to Lieve]

Thanks. I'm not sure we will ever find commonalities with all psp sufferers but I did tell my daughter I would ask. You would think the researchers would do more to find these things out wouldn't you.

[Lieve in reply to Hidden]

They could start with asking all of us here... with maybe a more organized questionnaire... I'm sure everyone would be more than happy to help. PSP admin - feel free to pitch in

[NannaB]

My husband never smoked or worked with chemicals. I thought it may be connected to his ulcerative colitis which meant for many years he was mineral and vitamin deficient but I know several other family members who had/ have UC but not PSP. Where I live used to be a nursery. Someone who lived in a house almost backing on to ours died 2 years ago from motorneurone disease, diagnosed the same month as C. Neighbours were worried it may be the chemicals in the ground, used when it was a nursery but I spent more time gardening than C and neither I nor Ps wife have any symptoms. Maybe there can be many triggers. I hope they find out one day.

[Debbieann in reply to NannaB]

Hi,F also has UC, and we live on nursery (or did) him for 25 yrs, we moved 5 yrs ago within the same area so probably still nursery or possibly landfill! (Not sure about that, I know there was a 'scrap yard' ) don't know if that's any help xxx

[NannaB in reply to Debbieann]

Wow! Maybe a connection then.

X

[Debbieann in reply to NannaB]

Probably just coincidence xx

[vlh4444]

My husband was a Civil Engineer designing motorways etc. I don't think he had any particular exposure to hazardous chemicals but he did used to recall how, at school in the 1950s, they used to play with balls of mercury in the chemistry lab - before the days of 'health and safety'! He smoked until about 30.

In D's family on his mother's side there have been a lot of cases of autoimmune related diseases and I feel sure there is a link. His brother, mother, three uncles and great uncles all died of conditions related to problems with the immune system. Interestingly brother, mother, uncles and niece also suffer/ed from ulcerative colitis and Crohn's disease. Our daughter also has quite severe autoimmune problems (ITP, otosclerosis etc.). She has been investigating a link with gluten intolerance and is currently on a gluten-free diet which seems to help.

It would certainly be interesting to see if there is a common thread among people on this site. As there is a recognised autoimmune link to MND, ALS etc., it seems likely that there is with PSP. Is anyone doing any research on this currently?

Vicki

[Heady]

My thoughts are, they were born with this disease. S's father worked in an aircraft factory, so who knows what nasties,he came across!

We have just been contact by the Unversity of College of London. They are running a project called Prospect. We are going to get a survey form to fill out and S will donate some blood for research. Apparently, all the questions, we keep asking, will be on this survey, from what the young lady told me on the phone.

I contacted the PSPA to ask about how to get in touch with the researchers, they referred us on to UCL. S's name is down for any new projects that they feel he might be able to take part in. Part of the Prospect research, is looking into the care in the community and knowledge of the professionals, we deal with! Hope I am in a bad mood, when I get to fill out that part of the form!!!

Suggest you contact the PSPA, if you are interested in taking part! The more they get, the better the results.

Lots of love

Heady

[vlh4444 in reply to Heady]

Yes D has taken part in the Prospect study. We certainly put everything down on the form!

V

[MaddyS]

Someone asked a similar question on this site about two years ago. There were many responses, unfortunately no common factor was found. I tend to agree with Heady that there is something in the genes - and something triggers it in later life. Hubby comes from a very healthy family background, no diseases, no nasty chemicals, always good food. He did a lot of sports throughout his life - suddenly PSP arrived out from nowhere ....... Let's hope a treatment and cure is found soon. A happy New Year to all of you. Xx

[Julieandrog]

morning!

no obvious risk factors with rog but i believe that prolonged stress must have an effect on the brain. researchers won't be able to quantify this so won't want to know!

julie x

[Amilazy]

I am filling in the PROspect-M questionnaire for M at present. It is quite detailed and covers most of the points that we (AVB etc) discussed in posts in Dec.

Please could I suggest anyone in UK who has not volunteered for this survey into possible causes or predisposition of PSP/CBD/MSA to volunteer, information through PSPA or Google, "PSP prospect-M study".

It asks questions about work environments and contact with chemicals, pesticides etc. So could answer your question. But also family backgrounds also covered.

Best wishes Tim

[abirke]

Before I read any of this all i can say is we must catalog these things!!!!

DEAR PSPA PLEASE HELP US FIND A WAY TO CATALOG OR INVENTORY COMMONALITIES OR PRESENT A QUESTIONNAIRE THAT WOULD IN THE FUTURE SHINE LIGHT ON AREAS NEVER CONSIDERED AS TRIGGERS TO THIS DISEASE/DISORDER

My husband and the rest of the family was subjected to a pesticide through a hired company who could not get rid of our ants. They tried "this old stuff they didn't use anymore"....It got rid of them....the ants very seldom come back and it's been about 5 years....B started showing signs of PSP around 2010-2011...is there a commonality...I'm sure it was a petroleum based chemical....but the fact remains that only 20% of household was weakened by this chemical...in this way....

It must be seen that a high percentage of your husbands coworkers got a neurological disorder/disease from their type of employment....

avb

GOOD LUCK

[Hidden]

Thank you everyone for your input. I know there are no easy answers and no common factors we can all pinpoint. Just trying to help my daughter deal with seeing her dad struggle with psp.

[steph02]

who knows, I was diagnosed in 2014 with atypical psp and worked as a chemist for many years with all sorts of chemicals but I contracted u?c in 1985 and its probably the years of taking the drug salazopyrine

that was used to control the u/c that caused the parkinsonisms

which raised it head in 2008. but who knows ? I think a questionnaire would be great idea..

[Georgepa]

Just the luck (or bad luck ) of the draw .

[Clarag]

Hello - that is interesting. My dad was diagnosed with PSP 10 years ago, he worked in the chemical industry all of his life & was also a smoker. I have wondered if there is a link with these kind of things...

[Hidden]

I found this article, its about not getting enough rem sleep being the cause of PD, AD, MSA. My dads had sleeping problems his whole life. Always been taking some sort of sleeping pill.

naturalnews.com/038930_slee...

[Hidden]

Good to know. Thanks for the article.

[kryste]

I am working on the same thing write now I just sent in hair samples again because convently the last ones got lost what articles were you reading if you do not mind you can email me at [e-mail]

thanks and hugs kryste

[Hidden]

Hi Kryste,

There was a post on here a while back that had a link to articles on chemical exposure. For some reason I can't find it anymore but I have been on line and googled progressive supranuclear palsy and exposure to chemicals. Quite a few links come up. Hope this helps. Let me know how you get on with this. Hugs to you too, Jean

[dadaroo]

My father passed away almost two years ago. He did not smoke. He did have type 2 diabeties. He did not work with chemicals either. He was malnourished which added to his condition. As far as I know it is the build of tau protein in the brain that causes the symptoms such as loss of eye movement control, tongue,..... What we eat has impact on us, so if we have the same type of food day in and day out, we donot get the nutrition our body needs to function, and little by little, things start to fall apart. This was my father's case. I am sure I am oversimplifying and there are a lot more to know. I am working on that. Care & love

[dadaroo]

As I am reading everyone's comments, there is a connection between psp and stomach problems. Our gut is our second brain. Research it for people with uc . Promoting good gut bacteria is what they have been talking in America . Research would help you to learn about whatever knowledge exists now. Hope it helps.

[dadaroo]

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I donot know whether everyone in USA have seen this card.