Husband and wife both diagnosed with rare neurological diseases?

My sister has been diagnosed with PSP, and over the past year, has gone from being a healthy, fully functioning woman to basically being on her deathbed. She's lost over 100 pounds, is bedridden now, and barely can eat or drink. It's been so hard to watch her waste away like this. But to make the situation even more painful and confusing, her husband has been sick for the past year as well with vague but growing neurological symptoms, and was just this week diagnosed with ALS (Lou Gehrig's disease). Have any of you heard of the possibility of an environmental cause for PSP? It just seems too coincidental that two people living in the same house together--both apparently healthy just a year or so ago--suddenly both develop rare and fatal neurological diseases. Our family has asked the doctors about this and we've been told that no, and environmental cause doesn't seem to be a likely connection between the two. I know that random coincidences can happen, but it all just seems too much to believe in this case. I'm sorry for all here who are suffering with PSP, or connected to someone who has it. It's truly heartbreaking for all concerned.

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  • I'm so sorry.

    From what I've researched PSP is more closely related to ALS (Tau) than to Parkinson's.

    I think the cause is genetic or a cell gone mutant. My son (just turned 55 years old) died of PSP on May 4, 2017. He too lost tons of weight from 162 to 119, but this in three years. He was sensitive to light, had double vision, and was practically blind when he died.....among many other symptoms.

    I wish with all my heart they could find the cause of both Parkinson's (more common) and PSP and ALS. I hope this happens in my lifetime. Sad mom.

  • My condolences to you, enjoysalud. How awful to have to see your child suffer so. Too young. I really am very sorry for your loss. Peace, ec

  • I really am terribly sorry for your loss ...

    love to your

    Jude

    Xxx

  • I'm so sorry for your loss and your pain, enjoysalud. Hugs to you.

  • I don't believe that ALS is a disorder of tau. It is a disorder of TDP-43 and perhaps other proteins. Perhaps you meant to say "AD" (Alzheimer's), not "ALS"?

  • What a terrible thing to happen. Tragic. I'm so sorry for you and your family.

    Over the years here the subject of causes has often arisen. There was a person here recently both of whose parents were diagnosed with PSP, apparently the result of consuming the Caribbean fruit sweetsop or soursop. How that fruit causes psp I don't know, but I believe it is authoritatively reported and accepted that there is a population susceptible to it. That is the only causative factor known. I believe my sweetheart's having had a nearly fatal bout with an unidentified virus in his 30s that paralyzed him for several days might have been the triggering mechanism, but that is only speculation.

    I wish I could be of more help to you. My sincere sympathy. Ec

  • Thank you, easterncedar.

  • What a terribly sad situation. I am so sorry.

    There is good evidence that ALS and possibly other neurological degenerative diseases can be caused by Cyanobacteria (blue-green algae blooms), which can be found, on occasion, in water bodies around the world. It is also present in the desert sand (hence the high incidence of ALS in Desert Storm war veterans). You can find information and watch the documentary on the research at toxicpuzzle.com. This is very newly published and ongoing research. There is no mention of PSP but the implication is that all these diseases may be triggered by the presence of Cyanobacteria.

    It cant really help your situation now, but it does mention food (sweet potatoes, coconut oil being two) and a supplement (L-serine) that can boost the enzyme (I think!) needed to ward off the disease. It is in no way an advertisement for a product or trying to sell anything.

    The lake we live on in the summer occasionally has blooms of Cyanobacteria and we used to water our garden from the lake. No longer! There has already been a huge bloom this year -very early in the season - and so the film is being shown in the local high school next week, with some of the research scientists and docs available for questions and comments.

    Do they live near a body of water?

    Finoni

  • Www.ethnomedicine.org and look up dr Paul alan Cox on Ted talks. And look into his research in Guam. 25% of ppl die from Parkinsonism due to BMAA toxicity. If you go through my posts you'll find everything.

  • Thanks, MndOvrmnky. I will look up your posts and the TED talks you mention. Every line of inquiry helps.

  • Very interesting.

  • I'm going to look into this, Finoni, and thank you for the information. They don't live near a body of water, though their water supply does come from an open resevoir some miles away. I wonder if that might be a factor (?) They live on the very edge of a small town in a rural area of Ohio, surrounded by farms (Amish and non-Amish), so the water issue has come up when wondering about a cause. They do have a cistern, and used that water to wash their cars occasionally and to water the garden. So could bacteria in the cistern be a factor? In my opinion, I think it's all worth looking into.

    One thing that the family has wondered a lot about is the possibility of some kind of mold causing this, as their basement has flooded three times over the past 20 years, and every time it's happened, they've cleaned up the mess themselves to save money. AT times, this meant ripping up carpeting and paneling, throwing out soggy and ruined items--always during very warm weather in the summer, where mold and bacteria had the chance to grow. They had a family room in their basement and used to spend a lot of time down there after they would remodel after the floods, and my brother-in-law had his own bedroom down there for awhile (so did one of my nieces when she needed to move back home for awhile a few years ago, and lately that has been a concern to think about in light of all this.

    As a side note, someone from a home inspection company is supposed to come this week to conduct mold tests for them that involve drilling into walls, etc. to look for the existence of mold. It's too late to help them, but my brother-in-law feels this needs to be done for his daughter's sake now. When he and my sister dies, their daughters will inherit this house. Neither of them want to live in it, but they will have to decide what to do with it. The thought of putting this house up for sale to unsuspecting buyers is just too much for the conscience to bear. But then again, we don't know if the house is the cause or not. And if you explain this all to a potential buyer, I would imagine no one would be willing to take on the house, and who in the world could blame them. So if the house shows a mold problem, the plan is to either try to fix it before the girls inherit the house, or to just tear the house down if the problem is too extensive and costly, to allow the girls to sell the land at least.

    As for potential causes, my sister and b-i-l have both been tested for heavy metals exposure, but the results for both have been normal. Actually, nearly every blood and urine test they've been given by doctors and in the hospital have shown normal results, except for my sister's MRI showing deterioration in her brain. Lung x-rays for both have been normal. We're still waiting for the results of the EMG test that should definitively indicate ALS for my b-i-l, although the neurologist is already 99% sure of the diagnosis due to his other symptoms.

  • According to Toxicpuzzle, Lake Eerie has, or had, a huge algae bloom. I wonder if their water originated there, or if they vacationed near it?

  • Well, they both grew up in Cleveland, on the shores of Lake Erie, and I still live there. We filter our drinking and cooking water with a Berkey water filter, but shower in the water as it comes from the tap. The thing I wonder about, though, is why we all didn't get sick from it, or my sister's neighbors in the country, if the cause was something outside the home, like the water supply. I am going to spend tomorrow looking at all the sources given to me here by various folks because that will maybe answer this question.

  • Here the cynobacteria algae bloom only comes occasionally. You can easily see it if you take a clear glass, fill it with water and if there are little green globules floating in it, do not drink or wash with it. If it's clear you are fine - at least from that. I'm sure your house water is not coming straight from the lake, but if you swim in the lake, do the test before going in. Obviously, most people have natural protection or whole towns would be affected. Who knows why some people are more susceptible to certain diseases. Very tough when spouses both have such ghastly diagnoses. I'm so sorry about your situation.

  • That is really odd iv wondered before about chemicals or something like that.

  • Cynobacteria is one of the oldest organisms. Apparently it is what initially gave the earth oxygen, so it is hard to fault it! As our lake feeds into Mascoma Lake, one of those mentioned in the film, I take a little of the L-serine shake I make for my husband in hopes of some prophylactic effect.

  • I must be losing my mind a bit. I just now saw that this website is for an organization based in the UK. Anyone reading my last reply must have been confused when I said my sister and her husband live in Ohio near Amish farms. :^) I'm sorry. But thank you to those who offered some helpful insight to me. God bless you all in your dealings with this awful disease.

  • No it isn't just for U.K. It is worldwide. We live in New Hampshire. But it does seem there is a prevalence of PSP in the U.K. - or maybe the docs there are just more aware of the disease. And they are lucky enough to have a healthcare system that gives them care-givers (carers), ££ allowances, and Hospice with daycare drop-off opportunities. We have a long way to go....

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