Most of us on this site refer to the length of time one has had the disease. Are most people measuring this from onset of symptoms? I would assume so.
Sandy had symptoms probably five years ago (2014) beginning with stiffness and balance issues. He wasn't diagnosed until spring of 2019. It has taken off like a freight train in the last 1-2 years. I wish I had kept a journal the last five years. Sometimes I try to sort this out but the months/years seem to run together.
I'm just wondering. Although I no longer try to guess at duration, it still helps to have a marker.
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journeyofjoy
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My husband started showing signs of PSP in 2008,but he was not diagnosed until 2013 after seeing 3 neurologist.he is still able to walk but with assistance, soft food diet,pretty much double incontinence.still sharp as a tack..please ask away, not sure if I can help but I do check in often.
PSP is so unpredictable and whilst there are guides as to the various stages ( see PSPA website) not everyone progresses through every stage. In hindsight my husband was symptomatic from 2008 diagnosed in 2013 and died in April this year. The Neurologist said he had a slow progression and indeed he was still with assistance able to mobilise around the house at the time of his death. But was incontinent and had significant sleep, communication, swallowing and behavioural challenges . I thought we had another year or two but he died very suddenly - choking due to his poor swallow ( he refused a PEG) I do recognise this was an “ unusual’ though not unique death and most have a more protracted demise.
So difficult for anyone to give you the answers you really need - cherish the time you have as it can be change in an instant.
I know what you mean. It would be so nice to have a marker. I honestly have no idea how long my husband has had this disease and I still question his diagnosis. Reading other posts I see symptoms of PSP, CBD, Parkinson’s and Alzheimer’s, but not his diagnosis of Lewy Body. So strange. Even his doctor is baffled. Freight train is a good way to put it! I feel like we’re going a hundred miles an hour around a twenty mph curve. I keep trying to hold onto my hat and make the best of a difficult situation but the challenges can be a bit much sometimes. I’m thankful for this forum!
Everyone is different. John was having balance issues in 2014 and saw a Neurologist who said there was nothing wrong. He had a bad fall in March 2015 and his speech was affected and he was finally diagnosed in September 2015 but when I look back he had it in at least2012 if not before. He now cannot walk, is on puréed foods, cannot speak, has to be fed , is doubly incontinent and cannot even press the buzzer for help. However he knows everything you say and has not got dementia. He gets so frustrated as he is locked in his body. John does not want a peg. Xx
My husband was diagnosed in Nov 2014 and died May 2018 and was was diagnosed almost immediately by the neurologist who sent him for tests and second opinion where it was confirmed ( he stated that cannot be completely 100% unless have brain autopsy upon death) Ben was only 66 yrs when he died and showed symptoms of the disease about 2to 3 yrs before diagnosis, particularly depression/apathy, staring eyes and the feeling of imbalance which he likened to feeling drunk. He was never pointed to a neurologist by GP (who it appears had never heard of the disease) he was sent for neumerous tests for brain tumours, ear infections etc etc but a nurse friend suggested I ask for referral to neurologist who immediately recognised the symptoms as PSP. Bens disease seemed to progress very quickly compared to others, gladly I was able to nurse him at home until he died very peacefully surrounded by his close family which was a blessing after his suffering. I believe there are more than one variants of the disease. As you already know there seems to be no rigid rules as to progression but I guess that's the same with many diseases but I remember wanting to know exactly how it was going to be. In the end we both just accepted that there would be progression but just lived one day at a time.
Am very sorry for all u and ur spouse went through and for ur loss. i amvworking on the acceptance part but not doing well at it at all. If I might ask, where was the neurologist who recognized the PSP symptoms...country..state..? Thank u.
Our neurologist spotted the symptoms on the first visit. Confirmed it with an MRI which showed a "hummingbird" shape around the brain stem. We are in the United States in the state of Virginia.
It's so difficult to say when the onset of symptoms start. Steve had a stroke in 2011, which seemed to bring on loads of PSP problems. Two years later, after a day of many falls, I thought he had had another Stroke, but doctor thought Parkinson's so sent him to the neurologist, who took one look at him and diagnosed PSP, although we weren't told! Letter to GP! With that wonderful thing called hindsight and a lot more knowledge, I know he was showing symptoms years before any of this. 20 years before, I remember an incident that had to be PSP, lack of spacial awareness. Even then, in the back of my mind, I knew I had seen similar episodes. My personal theory is, they were born with it. The Tau takes a lot of time to take over the brain and we all know the brain is more than capable of adjusting to slow on going damage, until it is overwhelmed, PSP diagnosed.
Does any of this help or make a difference. NO! If I had known would life have been different, of course! I suppose I would have been a lot more patient at the beginning, equally our lives would have ruined by PSP a lot earlier than it did.
Moral - it just doesn't matter, only today matters, what your loved one is capable of doing today. Today has enough challanges without worrying about tomorrow, even less worrying about yesterday, that's been and gone, mistakes already made and got through and survived. Of course the scars will stay, but who doesn't get through life without of few of those.
i will keep this post to read ur wise words over and over. thank u
It is hard to figure out how long someone has had PSP. As you say hindsight reveals symptoms long before one thinks they mean anything. Some of Larry’s go back twenty years when I think about it.
I found this page in the last year with an outline of stages.
Jeff, I think this outline of stages is helpful. Sandy has seven out of ten symptoms in the advanced category. Fortunately, he isn't having speech or swallowing issues. I think the mid-stage and advanced stage have overlapped for him but am pretty sure he's advanced now. Hoping for him to have a swallow test soon because I think he's having some trouble, although it's not interfering with his eating or drinking.
You say Larry has probably had symptoms for 20 years. It wouldn't be surprising. For something this serious, it probably doesn't come on overnight.
I know you're in a difficult stage with Larry. Hoping you are getting some good rest.
Stages and symptoms do overlap. Larry’s speech is mostly gone. Only with great effort on his part can he be understood. He doesn’t really feel like making the effort until I have tried to figure out what the word I am missing has been said ten times. Choking on food or liquids is divided between “normal” choking and distress choking. I’ve learned the difference.
Sandy may never have speech or choking problems. Some people don’t. The symptom guide is only an outline of what might happen.
As for my rest we are back to him getting up around 2 in the morning and going downstairs for the morning. He gets parked in front of the TV. I get to go back to bed with half a diazepam to knock myself out for a few hours. He usual wakes me with cries of help which is more about me getting up to tend to him then any thing he really needs. Today I got to sleep until 5:15.
It would be merciful for Sandy to skip the speech and swallowing problems. It seems that those would be the worst. He can't walk at all and is having more and more difficulty just pulling himself up to stand on the Sara Stedy. I guess you don't know which symptoms are the worst.
I am able to get enough rest most nights. I am sorry your sleep is interrupted all the time. That makes it hard mentally and physically.
At diagnosis my husband’s neurologist said he would have 5-7 years from that day. He died almost exactly 6 years later. He was diagnosed 5 months after his first GP appointment. As with most, symptoms appeared a few years earlier but my husband refused to see there was anything wrong. About a year after diagnosis I stopped thinking about how long he had left and concentrated on how we could make every day as good as it could be and making many happy memories which I can now look back on, the horrible times fading. I have photo’s taken on a visit to the coast 3 weeks before he died. At that time I never thought I’d be alone 3 weeks later.
My mother (CBD) first started showing concerning symptoms in 2004. In 2012 she was dx’d with atypical Parkinson’s, and then in 2015 with CBD. We assisted her starting in 2012, my sister moved in with her in 2015 to care for her, and she moved to assisted living in 2017 when my sister unexpectedly died.
Mom has so far survived every medical incident including several major falls (one down a full flight of stairs), pulmonary embolism, and a major blood infection. At this point she is fully bedridden, and can barely talk (I’m about the only one who can understand her at this point).
The timeline for mom seems on the longer side (she was in pretty good health). She has personality changes that are hard to deal with, and her logic isn’t sensical at this point, but she is fully aware and quite aware of every little detail.
Mom did not accept that she had a neurological condition until this past year. She fired 3 Neurologists (actually doesn’t even have one at this point). She cursed out me and refused to talk to me for months at a time when I talked about her having CBD. I realize now that this behavior was part of how her personality was changing. She also spent a ton of money on alternative treatments and to no avail. (10k on hyperbaric treatment, and an unknown amount on supplements - I threw out over 200 bottles of supplements when we moved her.)
My husband showed signs way before we had to buy a automatic transmission vehicle in 2005 because he could no longer easily use his left leg for shifting. He was 53 then.
Before that he would complain his legs (especially the left) would not always do what he wanted.
Most of the symptoms back then were balance issues and some mood changes.
By 2013 he really could no longer hold a job because of falling liability.
He used to be a painter and needed to climb ladders.
This is about when I really noticed a decline in his voice level and a strange
stare when he looked at me. His moods were getting worse and he wasn't
fun company to be around. I jokingly claim he's the one who made me become a "gamer" (video games)
Up until this point the only explanation he was given was that he had peripheral nephropathy. After one very bad fall in 2016 when broke his elbow and needed major surgery did we hear the term "severe Parkinson's disease". That's what the hospital staff were calling it.
Even a new Neurologist pinned it as a "Parkingson-isum"
Early last year is when I noticed a more steady decline. He could still easily
walk with his walker with me behind to steady if needed. But if he was down he no longer could get up and in bed could not move his body other than roll over. He was really becoming a dependent. He was having more trouble with
swallowing and major bowel issues.
Ended up at a another new neurologist who at suddenly stopped his exam at the eye follow test and proclaimed "he's got PSP". We're like... what. He then told us all the bad news and said I'm going to send you to a ophthalmologist neurologist to be sure. Definitive!
Fast forward to this year we switched to disposable under ware. His swallowing has gotten to where he needs honey thick, he has dropped to
under 100 pounds. This disease has seem to slip into a higher gear.
As of last month Hospice has stepped in. He is still very aware and with
much trouble I can still sometimes understand what he tries to say. He is
still holding his own and taking it one day at a time.
Hi there, my mum had no signs at all until she had a knee replacement in December 2018, after the operation she struggled to get back to walking, only managing down the kitchen and back several times in a day, then she started to have falls 7 in all by feb/march we noticed something wasn't quite right,how she was speaking becoming incontinent,no feeling in her lower legs, eyesight change, I took mum to the Yorkshire clinic to see a neuroligyst, on June 13 2019, he checked mum out then said psp and she was in the end stages, mum had all that goes with psp by this time, she sadly passed away on August 7th 2019, so we think the anesthetic had triggered very progressive form of psp if there is such a thing, all very sad but if I was going to have this dreadful disease I would want it to be that quick, such and awful disease to have,love to all Julie xx
Wow...such a varied timeline PSP can have! Going on 20 years maybe more with my husband and hearing your story being so short! Really makes one wonder if researchers are being sure to study each type of case. I'm hoping to finalize the process of having his brain donated to research for PSP when the time comes.
Hi there, I rang the psp association when mum's time was getting near to ask about brain donation, they told me what to do and who to ring, but mum was so rigid towards the end and couldn't do anything for her self, I actually backed out thinking she had gone through enough, I didn't want anyone to start removing things, I no it sounds silly as mum was dead and it was for research and it's always good to help, but I was feeling all sorts of emotions, that it was upsetting me to think about what they actually do, so I never made the call, I can just here my mum saying, when your gone your gone.xx
Luckily for me he expressed sincere interest in donating as he would really like to help with any possible future cures. I just get it finalized before something happens.
Because it happened so very quickly, we had never heard of psp like most people, mum was already very ill, when we thought about donation,I wasn't going to even try to mention it to mum, but then I felt, I should mention it, I just said mum you no you have this awful disease would you like to donate after you pass, mum just wrote yes straight away on her pad, I did feel better for telling her, she never asked anything about the disease or questioned any thing we were doing, she was quite happy in herself always smiling to the very end, mum understood things when you spoke to her laughed a lot new who we all were, then if she was unsure she would just say, I don't no like a small child at some times, she was very cute towards the end xx
My husband also started showing signs in 2014. Took us many years many neurologists and ER visits to get to a diagnosis from Neurologist in 2017. He was having trouble with right hand getting food to his mouth and tremors.
He had a big fall in 2013 and was malnourished. While in the hospital we decided on peg tube, which he wanted and gained weight and did better overall with better nutrition. He has had falls that landed him in the hospital and from there infections, sepsis, pneumonia, and CDiff. All from which he recovered and came home
He is now unable to do much but does walk with assistance about 3 - 4 days in the morning, about 20 feet, which has keep him going. We have taken care of him at home with help from a day care program that he goes to for about 5 hours/ day for 4 times a week. We also have a CNA that comes in the morning for an hour to help us get him ready. It has been a journey for our family. We love him and he has been a magnificent husband and father to our three children who are now adults. But started this journey when my youngest was in middle school. It is not how we thought it was going to go in our retirement but the spiritual and emotional gifts we have received have been amazing. Life is good and it has been a difficult road at the same time. I feel he is in his final stages, but knowing his strong spirit, only God knows when his time will come.
Many prayers and blessings to all who are figuring their way through this disease. All each of us have is one day at a time. I know it’s all I can do. I am his wife.
David (now age 76) first had symptoms of leg tiredness in December 2017. In January 2018 he said his bowling approach was weak. In June 2018 he had a forward lean walk and his first fall. He was officially diagnosed with PSP on October 8, 2018. We immediately moved in January 25, 2019, from our two-level townhome to a wonderful handicap accessible one-level townhome. Unfortunately, David has had at least 15 falls since January (one today and thankfully the CT scan was ok). We mostly use a wheelchair now as his legs are getting weaker. He does ok swallowing the little food he eats. He is starting to have some problems with swallowing pills, however. His voice is a little softer, but all-in-all he's holding his own. He has a PCA during the day while I'm at work. He has had wonderful in-home therapies. We have applied for Medicaid and are awaiting approval so we can get him a hospital bed and anything else we haven't purchased already to keep him comfortable and safe. It's been tough financially, but we look to God for provisions. So, my friends, we fight the good fight for our loved ones. Take care of yourselves too. I'm praying for you and yours. And for you whose loved ones are now walking those beautiful Streets of Gold with Jesus, I pray you hold onto beautiful memories. God bless you all.
In June 2018 my 77 year old mother suddenly began having difficulty speaking. It as if she was out of breath. She could say the words clearly but didn’t seem to have the energy to speak. We thought it was a side effect from the blood pressure medicine that she had started the week before. This and having little desired to do anything were her only symptoms until April 2019.
In April she didn’t have the strength to walk to the car after shopping for an hour. She also began having trouble with her vision and keeping her one of her eyes open. Her Dr sent her to a neurologist who did an MRI of her brain to see if she had had a stroke. It did not show any abnormalities in her brain. In May she began choking on liquids and started having balance problems and needed to use a walker.
In June she had 3 falls in one week, began speaking softly and began having incontinence and constipation issues. Mom was admitted to the hospital in mid June and diagnosed with PSP based on her falling backwards and the vision assessment. By the first of July she could no longer walk other than one or two shuffle steps and could not sit up unassisted. We began using a wheelchair to get her from room to room in the house. By August her words were so soft and slurred than it was difficult to understand her. Mom now has every symptom of the advanced stage of PSP.
Mom is cared for by my 80 year old dad...with daily the help from family. She has lost her ability to do almost everything in 6 short months. Her appetite is still good and her mind is still sharp. Mom’s decline has been so swift that I don’t have any idea what to expect in the months ahead. My only prayer is that when it her time to go that she will not suffer.
This is a very rapid progression. I'm so sorry. And your 80 year old dad taking care of her? What a champ. I hope he gets enough help so this disease doesn't do him in. The caregiving burden can sneak up on him.
Yes, I hope she doesn't suffer too long with this. Prayers for all of you.
My hugs go out to you! Your situation sounds so much like mine....we are definitely not alone in this journey although sometimes it sure does feel like it. My mom is also 77. She was officially diagnosed in Dec 2018, had many falls (broken back, hip replacement, broken shoulder all in a 6 month span) and has rapidly declined since then. Like others on this forum have said, looking back I think she's had PSP for many years. My dad died in Jun 2014 and I noticed changes in my mom since then. She is in a wheelchair full time since Jan; cannot stand on her own, eats pureed foods and thickened water but I still fix her favorite Graeters ice cream every night! I keep saying when she starts choking on the chocolate bits that it's going to be "death by chocolate" and she just laughs but still insists on her nightly ice cream treat...whatever makes her happy! She has slurred speech but since I'm around her the most, I can usually figure out what she is saying. She has gazed eyes a lot. Choking happens off and on. Throughout all of this, she has never complained. She is the greatest mom and friend. I treasure all the times I've had with my mom and I know it's going to be very sad when she goes, but I admit that I pray that she doesn't linger and suffer.
Hi there, this all sounds very much how my mum started, Jan,feb,march, 2019, all the symptoms coming, diagnoised with psp in june and mum saddly passed away in August just a very short time, very progressive. Your Dad is doing a wonderful job,bless him, I'm sorry you have to go through this, just keep reminding mum how much you love her xx
I never measured the time Les had this vile disease. I know, looking back, it was there long before his diagnosis. I would get mad at some of the remarks he made as they were so out of character.
Like you we were on a freight train once we received the diagnosis of PSP. I know it was fast as Les was taken into hospital on 31 May 2016 and never came home after that. We had the hardest year ever. Les died on 29 November 2017. He spent a while in hospital and was moved to a care home on 31 August 2016. The time flew by as we tried to get the care staff to understand how PSP affected him. As with a lot of people they just couldn't grasp the anquish and pain he was in. The end was horrid.
I would give the world to have him back pre PSP. He was 62 when he died. Now I have had time to think I believe Les was in the grips of PSP roughly 5 years prior to the diagnosis.
I don't know if this helps you at all. It's almost 2 years now since I lost Les. I am still struggling with having lost him but I think PSP doesn't give you time to react as it takes over. Then suddenly it's over and leaves heartbreak in its wake.
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Husband and wife both diagnosed with rare neurological diseases? 
Wretched disease 
Tom’s Disease !!
PSP disease
Having a bad day i hate this awful disease.
