What are the symptoms and stages for Progressive Supranuclear Palsy?
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?
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 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.
Hi. My husband has Parkinson's too. There is one thing you MUST do. Email JANET EDMUNSON at: firstname.lastname@example.org 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 email@example.com (we live in Hawaii). Draw strength from others and don't forget to take care of yourself first. Warmest Aloha, Robbin
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.
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..
I found excellent information regarding Progressive Suprnuclear Palsy (PSP) at www.curepsp.org.
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.
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:)
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.
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.
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.
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.
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
My Dad has just been diagnosed recently, and in my search for information I came across this document prepared by the PSP Association. It includes a breakdown of symptoms and stages (early, mid, advanced, & end of life), as well as lots of other information.
My wife die on January 15, 2015 from complications of PSP. I will try to answer the original questions as to how bad "this" is going to get. Very bad. My wife was diagnosed in February 2011 with PSP after original diagnosis of MSA (Multiple System Atrophy) was ruled out. There are a slew of diseases in the Parkinson Plus group (and no they are not Parkinson)--whole alphabet of them--PSP, MSA, CBD etc. The disease when diagnosed progresses rapidly--from slow walking, falling backwards, eye issues such that the eyes do not synchronize and hence double vision or blurry vision and in some cases blindness. Also PSP patients do not blink or rarely do--so make sure to squirt some eye drops to keep them moist. Eventually my wife went from cane to walker to wheelchair over the course of a year maybe 16 months. Speech becomes faint--a whisper and ultimately it is gone. The last year of her life she had very limited ability to speak or vocalize in any fashion. We used hand signals--one finger extended was yes and two extended was no.. Just have to make sure questions are yes/no structure. Ultimately she could no longer use her hands so we went to eyebrow raising movement so we could communicate a little bit. Feeding will become a huge challenge in the last year. My wife could no longer feed herself so I would cut everything up into very very tiny bits and feed her--used plastics spoons in case she bit down on it. Liquids will need to be thickened--to consistency of honey or nectar--there are plenty of products on the market to thicken liquids. Used sippy cups, straws etc. But do not let any of this stop you from going out to restaurants. We went out all the time. Put an apron on her and away we went. Never had any issues in restaurants and actually one of the most touching encounters happened in a restaurant--but that is for another day. One thing that is rarely mentioned, either in the literature or in forum like this--the physical pain. A symptom of PSP is dystonia--the rigidity that some have mentioned. Think of having a Charlie horse or cramp--but impacting your entire body. Some people have local dystonia--a leg, or an arm or the neck, etc. Some have General--which impacts the entire body. The pain is excruciating and the episode can last for hours. Unfortunately my wife had general dystonia and the pain was the most intolerable of all the symptoms. Get a good pain specialist--you will need to get at least to morphine to at least take the edge off. Use morphine in conjunction with gabapentin (restless leg and anxiety) and several other drugs to help deal with the spasms. It is the cocktail of drugs that will provide some relief. I have read of PSP patients that will ultimately go to methadone. At this point you on in the end stage. We spent a lot of time going back and forth to doctors to get the pain management in place--start planning it out now. Your family physician will know next to nothing about this disease--if they have heard of it at all. Get a good neurologist--preferably movement disorder specialist-- In my wife's case (her name was Barbara) the last stage was when a feeding tube was the option. She refused and our doctor agreed with her. And so did I. We all knew what that meant... Barbara died eight days later--at home surrounded by her daughters, sisters and grandsons. And me, her husband of 35 years. She was 66. One last thing--if you can handle it--both emotionally and financially--let your loved one die at home. A hospital or hospice center, no matter how they try is not a good place to die. The hospice came to us--nurses and aides came every day. They were great. And remember to tell your loved one that you love them--say it every day all day if necessary.
Bless you and your family for sharing. My dad was misdiagnosed 4 years ago. He was diagnosed with PSP this week. I have already seen a rapid change in him over the past few months. My prayer is for him to die at peace in our home surrounded by his family.
My mother was finally diagnosed with PSP a few years ago but she was an anomaly apparently. She has an off shoot of PSP that is even rarer than PSP. Her first symptom was a loss of speech and then her situation continued to digress. She is moving into an assisted living situation, but my gut feeling is that she won't be living much longer. Anyway...So many things are shutting down for her and it is really scary how quickly this is happening. She is unable to dress herself, she cannot feed herself and many other ADL's are declining...:(
My Mum was originally diagnosed with Parkinsons a couple of years ago aged 78 and then this was changed to PSP when the consultant noticed her inability to look down. I never thought I would have wished to stay with Parkinsons but I certainly do. Mum was the main carer for my Dad who was 8 years her senior. Her first symptoms were stopping blinking followed by falling. She became a danger when driving, slow reactions, and other strange things happening in the home which were becoming more and more dangerous. I got as much help for them both in their own home but eventually a year ago I had no choice but to put both of them in a residential care home near where we live. In this last year she has gone from being relatively OK and being able to go outside for walks or meals to losing the control of her bladder and then bowels, inability to look down, increased rigidity throughout her body, falling backwards, unable to sit back down in a chair, falling forwards, very slow movements, reduced amount of speech, very slow in replying to any questions, unable to feed herself, fixating on things. Having had a couple of years of her staring she suddenly became unable to open her eyes for long periods. Over the last few weeks Mum has sort of 'shut down' and more times than not when I visit her now she is sitting with her eyes shut, mouth open, sometimes conscious, sometimes asleep, It has become impossible to have an actual conversation with her, she will sometimes repeat what she hears, but rarely asks me anything. 6 months ago she was getting up in the middle of the night and dressing herself with no idea it was far too early. This last week she has been either getting up late morning, fully assisted by her carers, or just staying in her bed as she has been totally unresponsive to her carers. Not even a visit from her beloved grand-children can pull her back from wherever she has gone. The saddest thing for me as her daughter is that she whispered to me a couple of weeks ago ' What a dreadful state I am in' - what can you say to that? She is right. I have seen an odd glimmer of my Mum over the last 6 weeks. This is an absolutely horrific disease and quite frankly you wouldn't put a dog through it. Today she was in bed and could not be woken up or open her eyes. She is only really taking fluids and they are keeping her mouth hydrated hourly. Last week I asked her if she would like me to sit and read one of her favourite books to her and she did answer 'yes' so this is my plan. And yes, to tell her how much I love her whenever I can. I have come on here looking for answers and it seems that whilst there is a common theme each person is slightly different. I am praying we do not actually get to the stage where it is feeding tubes. My Mum has always been dignified and ladylike and it is bad enough seeing her go through everything she has done over the last two years without adding even more to her lot. My heart is with any other family members and friends who are having to witness a loved one with PSP.
I apologize for the long answer, but maybe something will help you as what I have read from others has helped me care for my mom. My mom was at first diagnosed with Parkinsons in 2008. After several doctors and many medications I put her in the car and we went to UCSF where she was diagnosed with PSP. Since then there have been many ups and downs. To start it was a lack of being able to focus on things, falling very rarely, and just an overall somethings not right feeling. She started using a walker around 2011 for stability. Still she was able to feed herself, dress herself and take care of things until around 2015. In 2015 she started having a caregiver dress her and started having more difficulty feeding herself. Fine motor skills like writing were extremely difficult, even signing her name. Vision problems also were more frequent. In late 2015 she ended up in the hospital with what looked like an infection though it was never found. She was hallucinating, having bad memory problems and stayed a week in the hospital. After several months she fully recovered her memory and the hallucinations stopped. She did not remember why she was in the hospital or any events that happened around that time. She went full time into a wheelchair. She could still carry on conversations and mostly feed herself with some frustration. Fast forward to 2017 and something major happened. She is now in a hospital bed full time and sleeping most of the time. She cannot get out of bed, her muscles are a wreak. She does not know where she is, she hallucinates often (she is on medication as it was really terrifying her for a while), she cannot feed herself food or beverage. She is on oxygen full time and has a catheter. Caregivers puree her food and squirt it in her mouth. She is still able to swallow and suck from a straw. As someone else mentioned their Mum was dignified and ladylike and she would be absolutely appalled if she knew the state she is currently in. My recommendation would be to stay active. Be active for as long as it is safe and then find ways to continue being active that are safe. One program that worked for my mom was something called "Big Movements". Make sure things are in order because everyone's timelines are different. Things like living wills, power of attorney, final wishes. My mom is also donating her brain to science so that hopefully one day this nasty disease will have some help or a cure.
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