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What are the symptoms and stages for Progressive Supranuclear Palsy?

12 answers | Last updated: Oct 20, 2014
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Q
An anonymous caregiver asked...
My dad has Progressive Supranuclear Palsy, which is a type of Parkinson's disease. What symptoms are normal for this disease and how bad will he get? I have had a hard time getting information on this disease. Are there stages like in other diseases?
 

Answers
67% helpful

Progressive Supranuclear Palsy(PSP), rather than being a type of Parkinson's disease, is an atypical parkinsonian syndrome that shares many features with Parkinson's disease. Patients with PSP, like your father, may See also:
Parkinson's Disease: How Medicines Can Ease Symptoms

See all 123 questions about Parkinson's Disease
have a number different symptoms but the symptoms that usually prompt this diagnosis include balance problems, stiffness and slowness of movement, and problems with eye movements such that double vision is common. Often other symptoms such as difficulty with speech and swallowing are present as well. There are several sources for further information including CurePSP and WeMove. Unfortunately, PSP is typically thought to progress more rapidly than Parkinson's disease and medications that are typically used in Parkinson's disease are only somewhat helpful. Although researchers use rating scales for PSP, we typically don't "stage" it like we do in Parkinson's disease.

 

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Heelermom answered...

Hi. My husband has Parkinson's too. There is one thing you MUST do. Email JANET EDMUNSON at: janet@janetedmunson.com Her husband had the Parkinson's Plus disease "PSP" as well as "CBGD." She authored the book: FINDING MEANING WITH CHARLES, Caregiving With Love Through A Degenerative Disease. She also is a motivational speaker, encouraging Caregivers nationwide. She is a warm and loving person. You must read her book. Her husband died at age 50 and she goes into the personal details of his symptoms, her caregiving, and their everyday lives of living with the disease. Don't be saddened by what you read, but glean what you can from it. You can purchase her book through Amazon.com or on her website directly (Google "Janet Edmunson"). As you will note in Dr. Glass' credentials (above), he was formerly with the Mayo Clinic in their Movement Disorder Department. One of my Facebook friends, Bob Summers, is a caregiver to his wife who has MSA (another Parkinson's Plus disease) and he took her to Mayo Clinic. You might try inquiring with the Mayo Clinic in Scottsdale, Arizona as they seem to be well informed on the Parkinson's Plus diseases (I was researching their website just the other day). You can contact me directly if you like at robbin-vern@hawaiiantel.net (we live in Hawaii). Draw strength from others and don't forget to take care of yourself first. Warmest Aloha, Robbin

 

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Fedora answered...

I don't have an answer to this question. My 66 year old husband was just rediagnosed (is this a correct word) with PSP. In 2006 he was first diagnosed with Parkinson's, then Parkinsonisms, then MSA, now PSP. However, the neurologists, movement disorder specialists and the neuro-ophthalmologists (yes - all plural) (we live in Arizona and Washington) - have said he has symptoms from several different diseases. I have attended some support groups (MSA - Seattle and PSP - Phoenix), I have observed his symptoms to be most like PSP.

I am responding to this question - as I would like to receive answers / comments / suggetions, etc. from other people who respond.

Thank you.

 

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scared son answered...

my mom was thought to have PSP as well because her "parkinsons" was progressing very rapidly. Now they say lots of these symtoms might be due to a rare deficiency of Vitamin B12..

 

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An anonymous caregiver answered...

I found excellent information regarding Progressive Suprnuclear Palsy (PSP) at www.curepsp.org.

 

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An anonymous caregiver answered...

I also do not have an answer for this question, but am adding my response in the hopes of finding more information.

My 62 year old father in-law was just re-diagnosed with PSP (neurologist originally thought it was Parkinson's, movement specialist diagnosed him with PSP two months ago), and as a family we are all struggling to find answers of how fast this disease will progress and what we should be doing to plan for his care.

We are hoping to get him seen by a PSP specialist in the coming month, to get a better understanding. But am posting here in the hopes someone might have some insights into at-home care for PSP.

Thanks!

 

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An anonymous caregiver answered...

I have found lots of informational websites. My 56 yr old husband has been recently diagnosed with PSP, and it does progress quickly, likely differently for everyone. Over about an 8 month period, his speech has become almost incomprehensible, he is walking with a cane, falls into his chair and has lots of trouble with swallowing and choking. I would recommend having a "living will" put in place as soon as a person is diagnosed, because communication is lost. I understand that most PSP patients end up with a feeding tube because of the choking. The choking often leads to aspiration pneumonia which is hard for these weak individuals to overcome. I'm scared to death with what I am up against, was trying to find more info when I came upon this site. My heart goes out to all caregivers and your loved ones:)

 

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Mom Shar answered...

I have read Janet Edmunson's book. It was excellent. I felt like the book was written about my husband. It has helped me a great deal. My husband is 77, he has been diagnosed for 5 years and it has been a slow deterioation until recently. If you have the chance to read her book and visit her website, it will be well worth your time.

 

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fy77 answered...

My Mum was first diagnosed with Parkinsons and after two years of rapid deteriation was than diagnosed with PSP in 2006 I have to say it was a hard battle to watch. My Mum passed away three and half years ago, If you have any questions about what happened I would be pleased to answer them but believe every patient is different. My Mum was hospitalized for last 10 months.Balance seems to go and then wheelchair bound, slurred speech, very shakey movements, feeding became a problem or very slow, once hospitalized after having seizures a feeding tube was inserted and also a trach to help her breath. It is a lots of work on caregivers, my advice is to stay calm and be patient. We didn't know anything about PSP either it is rare but there are some very informative websites.

 

strz714 answered...

My mother passed away from PSP in 1991--at the time it was virtually unknown. It was only after MRI's came out and became available that we were able to obtain a diagnosis. She started out having balance problems, and we started out going to ear doctors, thinking it was an inner ear problem. I would say it was 8 or 9 years from the initial diagnosis, but all the symptoms were there--slurred speech, tunnel vision problems, falling, rigidity. To this day, I know very few people who have had this--we were told mostly men develop it. I know Dudley Moore passed from this and tried to bring attention to it before he died. While working at a hospital, I was told PSP is an "orphan disease" meaning that because not many people develop this illness, research companies are not willing to spend money on research as they will not make much money in the medication it sells. Very sad indeed.

While my father was unable to afford an autopsy to further the study of her condition at the time of her passing, I often wonder if it had anything to do with the fact that she poured lead at a local factory for years, leading me to wonder if she developed lead poisoning prior to the onset of this disease.

 

Callie Faye answered...

My husband was also re-diagnosed with PSP two years after he was originally diagnosed with Parkinson's. It has now been 6 years since the first diagnosis, he was 57 at the time. He is now in a VA nursing home, wheelchair bound when he's not sleeping 20 hours a day. He still manages to eat a little but prefers liquids as they are easier to get down. He hallucinates all the time, has dementia and no clue as to what year it is or where he is. There are times he does not know who I am and on occasion didn't know who he was either. This is a horrid disease, has completely robbed him of his retirement years and his dignity. He has no control over his bladder or bowels and his eyes are so light sensitive he wears his prism sunglasses and his room is kept very dim almost to the point of being dark. I can only compare this to a living death. The doctor said he has made it this long because he was so healthy when he came down with the disease. As soon as he was diagnosed with what we thought was Parkinson's we had our living wills prepared, the power of attorney is especially important also. Patience is required and as a caregiver you must find some type of therapy, gardening or whatever releases your stress. I spend 5 days a week, 7 hours a day at the VA taking care of him to maintain that one on one that he so desperately needs, therefore I spend my spare time in my garden. When the burden becomes to heavy I give it back to God for a while. Just do the best you can, and know that you are not alone in this journey.

 

Rthomps answered...

My father was diagnosed with PSP. I would like to advise that chocking is one cause of death. My mother purees all his food and adds a honey thickener purchased at the pharmacy to keep his nutritional needs met, experiment with different foods. She encourages him to sing as a form of exercise for his voice. Since falling is another cause of death in individuals with PSP when they go for walks she makes him wear a bike helmet because he has injured his head due to falling. He also has fractured his ribs before, I purchased him a rib protector vest that football players wear for future protection. It may sound overkill but his safety is the utmost importance because falling injuries and pneumonia due to poor nutrition are leading causes of death. Take all precautions and encourage physical therapy to slow the degenerating effects of the disease

 

 
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