Are There People With psp Taking Medicatio... - PSP Association

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Are There People With psp Taking Medication For Other Major Ailments Like Diabetes, High Blood Pressure, And Did They Have These Diseases

29 Replies

Before psp

29 Replies

the reason i ask is i've only found out recently that the drugs my mother in law has been taking for the last ten years are neurotoxic, taking the two together for all that time and i'm wondering is there a link? i also found out that flu jabs are neurotoxic as well!

MummaMia profile image
MummaMia in reply to

Yes i can relate. I often wonder if mums meds caused psp. Neurologist thinks not.

metformin is one, ( diabetes ) i don't know the name for the high blood pressure medication, i honestly believe there is something in it, i do know these medications have played havoc with her digestive system, not being able to absorb nutrients vitamins and minerals, we are looking to put something together for her...

i will list some of the things if anyone might be interested. These are not drugs or medication,

Vitamin b12 ( methylcobalamin 1mg ), vitamin d3 5000iu, zell oxygen plus or zell immunocomplex, colloidal silver, germaniun with colloidal minerals and r- alpha lipoic acid.

We Have To Try.

jillannf6 profile image
jillannf6

hi iwent from having v lwo BP ot a high rate and am no wtaking 1 tableta day for it\(lisinopril|)

then i had hte pSP diagnosis and the high BP was probably cause dby the PSP

not hte other way around.

i do no thav eprobs wiht diabete s or high cholesterol just high BP

lol jill

:-)

Dear vjessv

I am thinking that rather than the medication causing things, PSP may have been on the cards all along, causing the other issues to come out first. Digestion problems certainly come with PSP and when you think about it the gut operates on muscles to move the food through. If that is not working properly then digestion must surely be affected. I was like you and wondered about medications as mum took epilepsy medication for 13 years in her twenties/thirties but that was also disputed by her neuro.But with hindsight( a wonderful thing) mum always had digestion problems as far back as I can remember. However she was a war baby and after the rationing they went through regarding food it was like she was unleashed and food was ultra important to her so she would be a little greedy if anything.Even through the whole PSP journey she always finished her food no matter how long it took!

Dianne x

msomaya profile image
msomaya in reply to

Now that you say it my dad also had digestion issues. He had been taking laxatives ever since I know and he also suffered a heart attack in his early 40's.

Pram profile image
Pram

Dear All,

My husband was diagnosed with diabetes and he was taking metformin for abt 2 years.. He lost a lot of weight and so he stopped that and went into yoga and diet control and ayurvedic meds which controlled his diabetes really well. Then this neuro problem happened.. very slowly and the drs couldnt figure out what happened. In the middle of 2012, one of the drs said it was PSP and another very recently said it is CBD.

Right now he is on syndopa 100/25 twice a day --it helps his movements-- i find that he slows down a lot if he doesnt have it- and I am just pumping him with anti-oxidants-- CoQ10 , alphalipoiec acid, grape seed extract, vit E - no diab meds and his sugar is abs normal. we keep checking the HbA1c numbers every 3 months and it shows no diab. Apart from speech, which is practically non-existent, he was managing everything on his own. He stopped driving the car only in Jan 2012.

In Oct 2012 he fell down and was hospitalised. Only after that till now, he has to be helped to do his daily stuff.. he walks by himself but someone is always around with him. He also eats by himself. sometimes he has episodes of choking but not always..

What makes it so difficult is that he was an athlete before and would go to the gym regularly, do yoga and suryanamaskaram etc -- healthy lifestyle - and no habits as such --

So whether it was becoz of the diab meds or not i have no clue-- but i have been reading all the responses in the site and thought maybe I should contribute :)

Padma

springbank profile image
springbank

My late husband had no history of any illness, he was physically and mentally fit, never visited the doctor unless called for a check-up. He was a joiner to trade and never put on excess weight. He was not on any long or short term medication. Smoked cigars or pipe. Only occasionally had a drink. He had CBD diagnosed at 62 though I am sure he had it for at least a year before that. He was almost 69 when he died. This sort of negates some of the above. Until a lot more analysis of life style, drug prescription and genetics is done and recorded it will remain a mystery why some people get this dreadful disease.

I will always remember the words of the Neuro consultant - "come back and see me next year if you want" I thought because it was a very rare thing to happen he would be more interested in how the disease progressed.

NannaB profile image
NannaB

My husband had ulcerative colitis for years from 1977 with 3 hospital stays over the years. He has been on medication most of the time since then as on the few occasions he stopped taking it, the colitis flared up. He was diagnosed with PSP in October 2010 and wasn't on colitis medication then but blood was found in a bowel cancer check and active colitis was diagnosed. I have wondered if the PSP is connected, not with the medication but the colitis which stopped nutrients being absorbed for so long. At one tme his potasium level was dangerously low. I took bananas into him in hospital and the doctor said he'd have to eat one the size of a double decker bus to replace what he should have. There probably isn't one answer but I pray they will find out what causes it soon to prevent others getting this horrible illness.

Nanna B

laroux profile image
laroux

I find it interesting that we all seem to have our thoughts and suspicions about common factors in this disease, yet I don't once recall anyone inquiring about my husbands lifestyle, work habits or otherwise, nor do I recall anyone looking into his med history to see what he had been taking. You would think this kind of info would be pertinent upon diagnosis, in seeking answers fora possible cause. My husband spent most of his life working in the irrigation business, out in agriculture fields that have been heavily treated with herbicides and pesticides. He also was prescribed ridiculously high doses of hydro-morphone for back pain, he takes nothing for pain now, I believe some of that was a precursor to his psp. I pray that one day there is an answer, and this horrific disease can be prevented.

joan

in reply to laroux

How I relate to this,I constantly have asked various consultants don't you want to take a history of my husbands lifestyle medical history but no they aren't interested surely this needs to be collated if we are to find a cause

Momto5 profile image
Momto5

My dads been on a lot of stuff before his diagnosis.

Over the counter garlic pills, vinegar tablets, fish oil, and vitamins. Blood pressure meds and thyroid meds and cholesterol meds. He is still taking them along with meds for depression, anxiety, sleep aide and dementia. Don't know what would have caused his psp but I don't think it was anything he was taking.

jimandsharynp profile image
jimandsharynp

My wife takes blood pressure meds and cholorstal meds. If PSP were as simple as a medication causing it I'm sure it would have been revealed by now. Of all the studies of PSP that have gone on there is no concensus as to the cause. They know what it is doing in the brain but not the cause. Speculation for me isn't an option to explore. I'll leave that to the experts. Once the "tangles" in the brain have started and have been detected it's difficult to determine the cause. Example from personal experience: My first wife died from Cruetzfelt-Jacob disease (CJD). It is also a rare brain disease. I was told by experts that the incubation period for CJD was so long that it would be impossible to detect the cause. I believe PSP is much the same, in that it is active in the brain at some level even before the first symptoms occur. I'm no expert but that's what I believe. As the doctors at the University told me about CJD "You'll go crazy trying to figure out the cause and it just isn't worth it". They THINK, not proven, that the incubation period for CJD is about seven years but, again, they just don't know. Perhaps PSP also has an incubation period? How long? When does it start? What caused it? We can, and do, ponder these questions but it will be answered in the future by the professionals in my thinking. Not trying to be caustic, just post my thoughts, yours may differ. We are living one day at a time and not spending time on the cause of this terrible disease. I wish you the best in dealing with your PSP patient/loved-one.

bubbie profile image
bubbie in reply to jimandsharynp

hi there, i thought you were going to come to boca raton yesterday. i e mailed u but u never answered. how is your wife doing? we had some new people at the meeting. there really is nothing to report. its the same news all the time. my husband is not doing to good but there is nothing to help him. we just push on and do the best we can. im so down today. it is so so sad. my son and his family were here for a week so that was great. i guess i miss them . hope to hear from you soon. bubbie

jimandsharynp profile image
jimandsharynp in reply to bubbie

Hi Bubbie, Sorry if you understood I'd be in Boca. It's just too far for us to go for a meeting. How many were at the meeting? How many of those had PSP and how many were caregivers?

Sorry your hubby isn't doing well. How long has he had PSP as best you can tell? My wife has had it about three years as best we can tell. At the moment she is at a "level" point. Not progressing at all or if she is it's very minimal. We go to Shands hospital at U of F later this month to see one of their top neurologists. It will be intersting to see his evaluation since we were there last, four months ago.

My heart goes out to you. This is a VERY difficult disease. I think it is toughest when the husband is the patient. I can, at age 77, handle things at the moment (no outside help at this point). Her speech and swallow are affected. Handwriting is a squiggle line. Mind works well but VERY slow. Eyes get dry but she is seeing well at the moment. She has stopped reading though. Balance and falls are major issues. We made it through March without a fall but just this morning she fell backwards trying to back up.

God bless you, Jimbo

bubbie profile image
bubbie in reply to jimandsharynp

hi , we had about 12 couples yesterday. most has psp . the rest has msa. which is very similar to psp. my husband was diagnosed 5 yrs ago with psp. he is 66 yrs old. we both were teachers in ny. we moved to boca 11/2 yrs ago. we had to sell our house because we had too many steps.i miss our kids but for alan this is the best place. we have good insurance and now i have very good help. he cannot do anything on his own.two yrs ago he was much betterthan now.he is at a bad stage now.the medication does not help and he has trouble swallowing. it is very hard for me. i lost my partner he also doesnt speak much and very hard to understand him. i try to be strong but its hard to watch. we have been married 41 yrs have 3 sons and 8 grandchildren. thats what keeps me going. hope to hear from u again. thanks bubbie

jimandsharynp profile image
jimandsharynp in reply to bubbie

Bubbie, You are in a tough situation and my heart goes out to you. My wife is also 66 with PSP. Thank God my health is excellent (no meds) so I can care for her at the moment. I understand, the swallowing is a major thing once it sets in for good. Fortunately my wife swallows quite well at the moment. Have you had the discussion with your hubby about a feeding tube? We haven't had that discussion just yet but soon we will. I know we both have directives for no "special" intervention in the end but we must still have the discussion. My sister-in-law is caring for a PSP patient who has feeding tube down the throat area. That patient shouts "die, die, die" at times and my sister-in-law thinks she wants to die but is being kept alive by the feeding tube at family request. Sad what transpires in this terrible disease. Has anyone in your group indicated that once a feeding tube is in place it CAN'T be removed? I wonder about that. We have four children between us and eight grandkids. You and I both have a rough road ahead I'm sure. Let's try to keep in touch.

Jimbo

bubbie profile image
bubbie in reply to jimandsharynp

we discussed no feeding tube. my mom had one for 5 yrs. and it was awful. what a crazy disease this is. so many people never even heard about it . my heart is just broken and sad. i cry all the time. the mornings are the hardest for me and then bedtime is also not too good. thank god i have help everyday. keep in touch bubbie

jimandsharynp profile image
jimandsharynp in reply to bubbie

Bubbie, You hang in there gal. We can do this, both of us!!

Jimbo

bubbie profile image
bubbie in reply to jimandsharynp

hi, good morning, thanks for the support. it is so hard. i have some very good friends but some of them are not so caring and very disappointed in them. i have one friend since im 8yrs. old and im so hurt by her actions. i think u see who is your friends. they stopped asking us to go out to eat with them.i know it is getting harder to take alan out anyway. he has trouble now eating. sometimes i feed him.so thats hard to watch. have a good day and say hellow to your wife. bubbie

Hi vjessv

The paper of Ghika 1997 is an example of a scientific paper that has been tested by other researchers over time. While there is still debate over PSP and hypertension, Colosimo et al in 2003 J.Movement Disorders (v.18:No6 p.694) showed the prevalence of hypertension in pathologically proven PSP was no higher than controls. It was suggested that Ghika's results were likely to be due to other problems masquerading clinically as PSP.

However, having said that, there is some "possible" evidence (from mouse studies - that should be held with caution) that Hypertension may have a role in aggrevating the progression of Tau-mediated motor impairment (as seen in PSP/CBD).

The other problem with PSP is that the average age of onset is 63 and many sufferers are in their 70's and 80's when co-morbities either existed before PSP or developed after. Trying to link hypertension directly with PSP can be difficult, even though some autonomic damage can occur in PSP sufferers.

All the best.

As many have commented, it is tempting to relate the onset of PSP to the use of medication or other illnesses. There is little attention in medical circles to that possibility, probably because no clinical test have been done or can be done to proof it. The problem is that medication to date is still a machine gun approach to disease and only major side effects are listed. My instinct tells me that one should take medication only as a last resort and try to get off it if possible asap.

I also agree with those who have experienced a lack of interest by GP's in their patients who have incurable conditions like PSP. Because nothing can be done about it. I beg to differ. Whilst there is no cure to halt the condition, there can be done a lot to alleviate certain symptoms, at least for some time. And that is very important if you care for someone.

Then there are other issues. Some medication can cause side effects because they cause deficiencies in substances critical to your overall health. Statins are a good example. They block not only the production of cholesterol, but also for example coenzyme Q10 which is important to maintain a healthy nervous system. That is why some GP's actually prescribe coenzyme Q10 to be taken together with statins. My wife was given statins at relative high dose rates without coenzyme Q10 and no tests were ever carried out to check if that was o.k. Worse, the GP only went by the total cholesterol reading and did not take properly into consideration all the other factors that decide whether / or not cholesterol levels needed to be reduced. We had this checked by an independent hospital appointment and it turned out that due to her high levels of HDLD, very low levels of triglycerides, her healthy blood pressure, etc. my wife was well below the average risk level for heart disease or stroke and that taking statins was totally unnecessary. So we stopped, but in the meantime my wife had been on statins at high dose rates for almost two years. During that period she developed PSP, so who knows it could have been triggered by her medication.

I myself have developed diabetes 2 and take metformin. The leaflet says that the GP ought to check if this does affect your level of vitamin B12 in your blood. Blood tests were done, but I was never given any details other than that my blood sugar levels are acceptable. Again vitamin B12 is critical not only for your red blood cell count, but also to maintain a healthy nerve system. Neurological disorders can often be related to low / too low levels of vitamin B12.

Spyke profile image
Spyke

Hi everyone, this is my first post here. I'm so sad to hear all the suffering PSP causes, my heart goes out to you all.

The reason I came across this site was through today's local Daily Echo story about Ted Slack's experience of the illness. The more I read that article & this web site the more I was astonished at the similarity to symptoms I suffered after being switched from one statin to another after surgery & being in reasonably good health in 2008. I had some nasty side effects from statins before 2008 but nothing compared to what the new drug inflicted upon me in the short period I took it.

I immediately had severe memory & dementia type symptoms, couldn't string a sentence together with the words in the right order, had chronic all over nerve pain, blood sugar levels rocketing, chronic gastro intestinal problems, peripheral vision & inability to focus & just about everything others have described on this site. I could not remember how to drive or how to use a knife & fork, had bouts of double incontinence, falling over, you name it. I could almost feel that the protective layer of my nervous system had been dissolved & my nerves caused me similar problems to PSP, MS, CFS & ME type symptoms.

Luckily I stopped the statins and have made an almost full recovery over 7 years using ubiquinol, b12, b6 & many others. I too was found to be running empty on vitamin d, after a whole summer sunbathing & had to take loads of that also. I also had to eat lots of oily fish, no dairy as pre 2008 I became intolerant. After 2008 I had even more gut & immune system problems and it turned out some years later that I had become 100% gluten intolerant also!

I was completely abandoned by NHS Drs as I felt statins were making me ill (didn't realise the full extent until recently) and refused to take them any more. Luckily my own research & a private Dr got me through it all.

I'm very curious to know whether others had taken any medications that may have had an influence on their having PSP or similar dementia type medical problems.

DenB profile image
DenB in reply to Spyke

Hi Spyke

I know I am replying to an old post but I wanted to say that my husband was fit all his life...never even had a cough or cold that I can remember and then out of the blue, he had a DVT in his calf and so had to take Walfrin for 9 months.It was nearing the end of the 9 months that I noticed that he wasn't the same.I was putting it down to the Walfrin but the doctors didn't of course agree.

That was the start of his signs of CBD but no one knew it at the time.It took at least another 2 years for the diagnosis.

They all said that it was just a coincidence that Roy got the CBD whilst recovering from the DVT but we will always wonder! Take care xxx

Spyke profile image
Spyke in reply to DenB

Sorry to read this DenB, were statins involved at all?

DenB profile image
DenB

When his first symptoms of CBD appeared the doctors thought that he had had a small stroke and Roy did start to take statins but soon gave them up after reading about the side effects.

GenaBenedict profile image
GenaBenedict

I' HAD DIABETES FOR 63 YEARS. IT HAS AFFECTED MY IMMUNE SYSTEM ,MY NERVES , I ALSO HAVE BEEN TESTED POSITIVE FOR LUPUS, NOTHING HAS BEEN DONE ABOUT IT., I HAVE HAD OSTEOPOROSIS

FOR ABOUT 10 YEARS. HAVE HAD BEEN TOLD THAT I'M ANEMIC .MOST OF MY IMMUNE SYSTEM

PROBLEMS, STEM FROM MY LONG TERM DIABETES, 'IM IN PERFECT CONDITION AS FAR AS MY DIABETES IS CONCERNED. THAT'S THE REWARD FOR EATING PROPERLY .HANG IN THERE AND DO HE BEST YOU CAN DO . TAKKE ONE DAY AT A TIME. OH I FORGOT IVE HAD THYROID PROBLEMS FOR 62 YEARS

in reply to GenaBenedict

This is worth watching just for its general view on what is going on.

youtu.be/y40YZLIaHoo

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