Seeing signs of PSP in husband of 64 yrs - PSP Association

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Seeing signs of PSP in husband of 64 yrs

Debspottery1
Debspottery1

Since I happened upon this site, and immediately saw similarities in others comments about PSP, I'm hoping to understand what I'm up against. My husband has been drooling, droopy and bulging, staring eyes, not sleeping more than 4-5 hours, scratching at himself, driving on the middle line of the road, having minor accidents, forgetting to pay bills, doing strange things around the house thinking he's fixing things. Having trouble with balance, shuffles, falling just started. He's overweight- keeps eating junk food. He'd had sepsis almost two years ago- antibiotics for almost 6 months. Trying to get him to change his eating to mostly vegetarian and do detox- but he's gotten more stubborn and bull headed since this started in 2015. I have to work for health benefits as he's self employed- so I'm afraid what he'll do when I leave for a 3 day block shift in health care at my job. He's weak, can't lift much more than 50 lbs. Has trouble getting up out of a chair. He's been injuring himself a lot in last 6 months or so. He teaches music lessons- his students have noticed the changes- have begun to drop off. Family sees the changes- but are either afraid to discuss it- or are hoping I'll be able to handle it myself- as they all have their own responsibilities.

Is PSP a recognized disability in the US? Doctors don't seem to be alert to the signs. Is this connected to autoimmune issues? His dad had Parkinson's, dementia and Alzheimer's as well as heart disease.

9 Replies
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Hi, I am UK rather than U.S. so I don't know about the systems you have regarding recognized disability, but it does sound like you need to persevere with the doctors. Elements definitely sound like my mum and her PSP, and even if they say something different from what you think it might be, it sounds like there is something going on.

My Mum is also really stubborn, always has been and is worse with her PSP! With the change in diet you are attempting, maybe aiming for slightly better foods as opposed to the fully healthy stuff, it might not be more acceptable? My daughter is really fussy with her food and by discussing good and bad foods with her she will pick the middle road herself, so it is her idea, not me forcing her. Julie

I'm pretty much a newbie here myself. I am in the US . Where in the US are you? Regarding disability, I would think any terminal disease would be classed as a disability. Seems like your hubby is about the same stages as mine (maybe a little worse). I must say though yours must stop driving if he hasn't already. Mine was OK driving but I just worried about him getting in an accident then it would have been his fault regardless and insurance probably wouldn't pay. And even worse if he killed or maimed someone.I suggested he stop and it was a lot easier than I thought it would be. Regarding the overweight, my husband has lost a lot of weight in the last 6 months even though he eats well. His neurologist recently changed his diagnosis from Parkinsonism to PSP. Research and Read the posts on here and you will learn a lot. Usually people are more responsive in answering questions . Keep asking. CurePSP is US based association.

Hi Debspottery

There are so many illnesses which can produce these symptoms. I would strongly suggest he sees a neurologist. He may have something which is treatable.

I never know whether to comment on people's prefered home treatment choices. So forgive me if I say that recent clinical trials showed detox diets not to work. Like many of these things it has run its course... Sorry if I sound cynical, I am not, I just sift through what is available quite carefully checking the evidence. On the other hand there is plenty of evidence that a fruit vegetable based diet does lower the incidence of many chronic illnesses.

As for driving. If he is reacting slowly and /or has trouble moving his eyes, then it might be wise to knock that on the head for now? My wife stopped when we found that she was too slowed down in her thinking and reacting to drive safely.

Welcome to the forum.

I'm sorry you are both faced with this.

Kevin

theguardian.com/lifeandstyl...

See a neurologist and have tests run to see if it could be something else. Some of the symptoms sound like PSP others maybe not. There’s no PSP test. You may want to see a movement disorder neurologist.

I agree with Kevin_1 and Jeff166. It could be a number of neurological disorders.

Yes PSP, FTD, etc, are recognized disabilities in the USA. Google "PSP and Social Security benefits".

Your husband needs a neurologist's diagnosis (DX) before being awarded the disability.

If he has PSP there are currently clinical trials being conducted here in the USA by two pharmaceutical companies....Biogen and Abb-Vie. From the sharing of caretakers, they both sound VERY promising. The earlier your husband gets DX the sooner the possibility of being eligible.

My son at 55 died of PSP. He was highly gifted. You can read my sharing under PARKINSONS TO PSP.

His father was a full professor at a California State University and his students noted behavior changes. UCLA DX him with FTD.

My son, myself, and his father were/are residents of California.

Their behavior and symptoms were not the same even though both are "Prime of life brain diseases".....for this reason do not attempt to DX it yourself. GET HIM TO A NEUROLOGIST....if your health plan insurance allows, get him to a university affiliated one.

Good luck!

Hi. I would definitely get some cognitive tests done and then see a neurologist. But in the meantime definitely get your husband to stop driving. Good luck and god bless. Marie

Hi Debspottery1!

I'm sorry to read your experiences. It is terribly hard. He needs help urgently.

By internal private mail I sent our experiences on PSP in case they were useful.

Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Hug.

Luis

I am sorry to read your husband symptoms sounds very like my husband who died 6 months ago. He may never admit he has anything wrong with him even though he is falling etc. Make an appointment with a neurologist and write down your worries about driving and everything else. My husband would have never listened to me about his driving let a doctor tell him. Send the letter to doctor ahead of your visit. I wish you luck as it is a very hard road and denial is hard to cope with. My husband never once discuss his condition with me so sad. Big hug xxx

Not sure where you are in the US, but my husband is being seen in Dallas TX at UT Southwestern Hospital. They have a Movement Disorder department and a PSP Clinic. Our local neurologist had been on the Parkinson's Plus trail for a couple of years , but the Doctors in Dallas confirm the PSP diagnosis. I believe any of the progressive neurological diseases would qualify as a disability. You might contact your local social security office. Steve hasn't driven in three years now, after wrecking his truck due to slowed reflex and thought. He wasn't injured but it was enough that all his doctors said no more driving.

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