PSP Association

poll,how many years and stages PSP &CBD

My husband has PSP and Im finding I would really like to know the answer to these question from others.

Male first onset Age 57 in 2009

Diagnosed at the age 61 in 2013-off all parkinson meds.Takes high blood pressure meds

2018 will be 66 years old, now has had PSP for 9 years

Now in the 9th year ,he is still able to walk with someone behind him

Not completely incontinent but getting close to it

Eye are closed 90 percent of the time

Pretty much a soft food diet

coughing and choking a lot

Still very aware of his surrounding.

Little to no communication.

Takes glycopyrrolate 1.2 mils every 4 hours to help dry up saliva

Dee in BC

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Hi Dee:

Husband, first symptoms (that I know of) 2013 (age 73)

Diagnosed (query) PSP 2016; (age 77) Diagnosed CBD 2017 (age 78)

First symptoms: Speech and writing loss, slowness of movement, social etc apathy

Now in 5th year: Left side alien limb, more balance & falling problems, only one or two words speech at a time, can still walk slowly for short distances, lots of coughing but can still eat regular food, Has significant cognitive loss but is rational. Is still continent.

Takes rivastigmine and an SSRI

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I hope you are able to learn from this exercise, although I think it will be just how unique each case is.

My husband's first symptoms were 2008 or 2009, but not of concern until 2010. Finally got him to address "something is going on" -- Dec. 2012 Diagnosed as disease of the basal ganglia. PSP March 2013 through MRI. Great doctors!

First symptoms-- slurred speech, falls (all easily explained)

Medications -- only carbidopa-levodopa since diagnosis.

Currently -- He will be 79 this year. Can walk with assistance (but stays in a wheelchair to avoid falls), mild right side ataxia. Eats regular foods, some coughing on thin liquids if he takes in too much. A little drooling, but no thick phlegm. Little to no stiffness, and only in neck. Cognition is slower but still sharp. Speech is soft and does not enunciate well (esp. when tired) but can be understood. Manageable constipation and continence. Cannot write. Eyesight is blurred and double. Exercises almost daily on a recumbent bicycle. Weight loss significant, but has leveled off. Manages his own executive functions, although I do bathe him to avoid falls. He does not have any pain.

Let me know if there is anything else you want me to add. Good luck!

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It's great thank you, I still have the need know about others,but I remember it well when I was flying by the seat of my pants trying to know what we were in for.

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Perhaps a list will tell us if some symptom will occur but that it may occur. We can be prepared physically and emotionally, so no surprises. And to enjoy every good moment.

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As Christine said, everyone is unique. My husband was diagnosed in September 2010 and the neurologist said he would live for 5-7 years after diagnosis. He died October 2016, 6 years after diagnosis. During his illness I wrote a time line of events for him but even yesterday my brother pointed out something odd my husband did about two years before my timeline started. Make the most of the time you have left together.

XxxX

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I guess my drive is that if presented with all the difference in each person of these diseases that we have bits of what may happen,better then not knowing.

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My husband was diagnosed in 2013 rediagnoised in 2014, he is in a wheelchair all the time, he cannot walk, getting harder to transfer, hoist is the next step, left side is worse, coughing and choking all the time, he has puréed food, can sometimes eat a pancake, which he loves, talking is very bad, he has a catheter, his bells are open about every 3-5 days, I think they forget how to push. Sometimes we can get a smile out of him, if you remember something that happened years ago he will laugh, when I ask him if he remembers. Yvonne xx.

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Georges progression sounds similar to my husband. Dan is a 2 to 3 person transfer. Hoyer lift is ordered , but me hope to try a power stand Aid first. Dan is still able to eAt. He can handle a sandwich , but often leaves it in front of his mouth forgetting to bite. He has a hArd time with utensils. He will choke a bit with liquids is not sitting up enough of if he drinks too quickly. Taking pills is getting more difficult . Sometimes he will start to chew them. Did the swallowing problems come suddenly or very gradually?

Dan too has one side that is very rigid. It is very heavy for me to move to dress him. Does George get enemas? I think you are correct about the pushing .

Dans cognitive function also seems similar. He had one amazing day recently when he answered a few questions for a home nurse. It was amazing, but odd . Generally he says 2 words on a very good day., many days there is no speech. On a good day if we have visitors he may respond with a “Hello”. He will not even shake his head or respond when I ask him if he wants a treat. When I begin think he might not be tuned it at all, someone will mention an old shenanigan and his eyes will light up and we see a little smile.

At one point he had severe rigidity in his neck. That is better now. I am also seeing more restlessness at night. This is a big concern for me, as I must sleep.

Dan does not have a catheter, but has had two UTIs in the last 3 months. He just finished his last round of antibiotics after 5 days in the hospital . His urine is getting dark again. This is not uncommon for him, but now I am on high alert.

Do you ever take George out anymore?

I’d like to get a WAV to take Dan out a bit this summer. I’m hoping I can handle it .

Thanks for listening. It was a bit of a ramble.

Karyn

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Karyn no enemas we give him flaxseed oil on his food, think it helps. We don’t go out much, george always says he needs the loo anywhere we go. George had carbonated water and we use organic cranberry juice in the water, not had a urine infection for over 8 months, worth a try, his coughing is worrying me a lot, I am going to email Proffesor Morris to see if we can take him in. He can sometimes also eat a sandwich. He has had the rigidity in his neck but is ok now doesn’t complain. He has started to complain and pain in his hands? Speech is not great, some days you can understand more. I bloody hate this illness. Yvonne xxxxx

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Thanks. I will try the cranberry juice in water. How much do you give him each day? His infection was severe, so I worry.

I think Dan has pain, but does not speak to complain. He will grunt or make awful faces.

I understand your worry about the cough. When Dan has trouble with coughing or breathing I am always concerned he may be aspiration . I bloody hate it all. 😂

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In addition to the cranberry juice my dads dr. told him to take Vitamin C at bedtime. The acidity in the vitamin helps kill some of the excess bacteria lying around during the night.

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Thanks. I’ll try that. Can’t hurt.

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So good to hear re the bowels and comment on think they forget how to push, I put it down to not being able to use the muscles anymore, like blowing the nose, never in my wildest dreams did I ever think I would be picking Leon's nose and bot bot, and the smile bit too is so Leon. A wry lopsided smile makes my day. Taps his foot to music, tries to sing, brain is brilliant. Horrid illness Marg xoxo

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I totally understand this need. I had exactly the same at the beginning, until dear friend on here, Jimbo, put me right. Everyone is different, with different symptoms at different times. The only thing that matters,is NOW! TODAY!, this very minute. How is your husband today? Can you take him out? Can you hold his hand and tell him you love him? I know it's so,so hard,trying to make sense of PSP, but there is no rhyme nor reason to this evil disease and certainly doesn't comply to any rules. All it does is drain your limited resources and that is one thing you can't afford.

So if you can answer Yes to my questions, do so! Get out, forget about PSP for a few precious moments and enjoy the company of your man.

Sending big hug and much love

Lots of love

Anne

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Larry’s first significant fall I am aware of happening Fall of 2011. Age 63.

Second major one Fall of 2012.

Complains his handwriting is becoming unreadable.

His cousin tells us his speech is slurred Fall of 2013. I hadn’t noticed. His aunt who is a nurse tells him to see a neurologist.

A year and a half of tests with no results or ideas on the part of the neurologist.

May of 2015 saw another neurologist for a second opinion. Diagnosed with Parkinsonism, then PSP.

He’s still in a remarkablely good state from the reading I’ve done on this site. Can walk with my hovering, eats solid foods, drinks with choking-gagging. His speech is not great. More his lack of effort to be clear. After I ask him to repeat himself three times he usually screams at me very clearly. Hey, it works.

Maybe we are starting year 7. He did mention falling before the 2011 fall. I have no idea how long this has been going on. We both turned 70 a few weeks ago. I’m beginning to think he will outlive me.

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Hi Jeff. Was reading your post and my husband is at a similar stage, he was diagnosed in 2014. What struck a cord with me was about speech. When my husband attends his speech therapist or his friends visit him, his speech is clear but with me it is slurred and difficult to understand and when I ask him to repeat, after a couple of times with no improvement, he just says 'forget it' as clear as a bell. This gets me so cross because he can speak very clearly when he talks slowly and takes a breath between words. He just doesn't make the effort for me. Stay strong and take care. Xx

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Larry is the same with others. He’ll make the effort. With me not so much. A good deal of the time I have an idea what he is talking about from the few words I do understand.

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Same here Jeff, I can guess what W is saying and respond. But there are times when I'm feeling tired especially having been up numerous times during the night to take him to the bathroom, I just don't let him off with it. Not very nice of me I know, but my patience wears thin. 😤

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My patience wears thins as well. I get angry with him. He with me. It passes and we go on.

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Leon hardly tried with me with speech, but with therapist did try, eventually he just gave up, before putting him into care 6 weeks ago, I was up up to 40 times a night with him, I did that for 2 years, when the carers that came to help shower him, put in a report that I had Carers Fatique and I got respite for 2 weeks. Now looking back I don't know how I coped for those latter years. My patience too was wearing thin, can handle 7 hour visits now he is in care, knowing that I actually have time out when I get back to housesit. This site is so so supportive, look forward to my fix everymorning reading everyones posts

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Margh, 40 times a night!!! Wow, I'm up only 4 or 5 times and I think that's rough, think I need to toughen up a bit. Love, Nanny857 xx

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I know Nanny857, it was worse than when I had my babies, funny how it all reverts back to those stages, no-one knows how I coped and stayed sane. Even looking back, and it has only been 6 weeks that Leon has gone into care, I don't know how I did it.

This site, as I have said before is invaluable.

Hugs Marg H

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I consider myself a old hand at this PSP thing and I have been told be in the present,love and enjoy what we have and don't think in the future....To you other old hands....We have knowledge that no professional health person (doctor,nurse,etc )could or would tell us what to expect. I was told to by our Neurologist to go to psp.org and figure it out. I owe all you good people on this site for saving my sanity. The questions that I was never able to really get answers on was the time frame and what to expect in those time frame...I think I pretty much helded my breath for the 7th year thinking the end is gotta coming soon because that is what I was lead to belive,and now I know better.My husband is in his 9th year for sure and I do belive it's a lot longer then that knowing what I know now. ..KNOWLEDGE IS POWER..

Dee

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Dear Dee, you are one of the first people whose posts I was reading on this site before I started piping up. You are an old hand at this. It seems so long ago and just a snap. I had so hoped my sweetheart, who was diagnosed quite quickly, was going to outlast the median. The neurologist told us she had a patient who was still living more than12 years on.

Peterjones, who seemed to be charging along at full steam right to the end, traveling, winning at the pokies, making us laugh with his misadventures, went down so fast, a matter of a few months, once the recurrent pneumonia started getting to him.

My guy was showing symptoms, a foot drag and falls, for a couple of years before the psp diagnosis at age 65. His memory was, in retrospect, giving him trouble from the start. His handwriting began to deteriorate quite quickly. He basically steadily lost ground on all fronts from two years post diagnosis despite all we could do in terms of PT and SALT. No medication helped. In the 6th and last year his communication was fading and confusion growing, although he kept his sense of humor and loving sweetness; he had some ability to assist in his transfers and even walked a bit with support until the last three weeks, but he was always prone to falling as he wouldn't stay still, and he hurt himself terribly in falling. He ate regular meals until the last two weeks, although it was a slow and difficult process, as he could not feed himself and often choked. He rather suddenly seemed to lose entirely his ability to swallow, and then he decided not to try any more.

He died three weeks after his 71st birthday.

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...should be an emoji for "I appreciate this, with sympathy" as opposed to "like" ...;-)

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Dee, were our neurologists in cahoots? Ours told us "Your husband has PSP, look up PSP Assoc website they have all the info you need to know". We were going to my son in law's 40th birthday bbq afterwards and when we got there my daughter and i immediately looked it up and saw "terminal, 7 years after diagnosis. Needless to say we made our apologies and didn't stay for the bbq. However this forum has been a godsend and taught me to forget the '7 year' timescale and to enjoy the here and now. xx

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Prior to moving in with me in Aug 2014 (age 72) I know Dad had a few falls, when pressed he tripped etc. His speech was slower but I just attributed it his age. After he moved in there was no diagnosis of anything till he fell once and I got him into the doctor late Sept 2014. His movements were slow, already showing slight rigidity in right arm. Doctor started doing tests and neurologist went with Parkinson's. During this time it was discovered he had Prostate Cancer so everything else was tossed on back burner while a treatment plan for the cancer was implemented in Jan 2015 with treatments running thru May 2015 Started using a walker part time around July 2015.

He got around pretty much solo till Aug 2016 then started using a walker full time, his gait was slow and shuffling with some instances of "stuck foot to floor". He never seemed to respond to the Parkinson's med and in Oct of 2016 he was diagnosed with Atypical Parksonian Syndrome and referred to Neurologist movement specialist. After seeing that Neuro doc it was decided he has CBD, due to the alien limb movements of right arm. He was already having a hard time moving around and required assistance even with walker.

March of 2017 he went to a wheelchair full time after another fall. Feet getting "stuck to floor" very often now. Much more rigidity and getting hard to understand. Starting to help with meals and all transfers. All Parkinson meds were stopped now as they kept increasing the dosage till dad started having mild hallucinations. Gradual progression requiring more assistance in all things.

Sept 2017 moved to nursing facility as I couldn't keep up with his ever growing needs plus balancing my own family life. 100% dependent now.

Today he is in bed 80% of the time, foods almost puree'd, chokes a lot on thickened liquids and some foods, can't be understood, most of the body is very rigid, eyesight blurred off and on.

Ron

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I agree with others that the progress is very varied - especially the last stages.

Chris had falls, dizziness and some cognitive issues and behaviour changes since about 2009. Just put down to ageing. He saw various consultants - heart, throat, hearing - but no result until I went with him to the GP with a list of my observations and asked for him to see a neurologist [ I thought mini-stroke ]. The neurologist was experienced in PSP and diagnosed it immediately - to be confirmed by a scan. He prescribed sinemet and Chris took this until he died. He felt it helped him.

He was diagnosed Sept. 2013, just before his 80th birthday.

He was determined to prove doctors wrong and " beat it ".

By July 2017 he could still walk with me helping him and I drove us from London to Yorkshire for a holiday. He was eating food cut up, tired and needed help eating, slept a lot, hospital bed downstairs, incontinent, talked little but still enjoyed involvement socially. I was negotiating buying an adapted car for the wheelchair, preparing to get hoist and apply for CHC

Then he got an infection in his lungs, went into hospital in early August and offered a PEG, which he didn't want.

He came out of hospital after a week, completely bed-bound, very weak, puried food, palliative care team, choking even then.

He decided he had had enough and died at home in October. He wanted to die at home.

There is no certainty to this disease.

Jean x

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Jean, you say Chris took Sinemet. Did he have any side effects. Our neurologist wants to try W on it but I've read posts that say this is a medication for Parkinsons and doesn't help PSP patients and that some side effects can't be reversed so I'm a bit concerned.

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For what ever it is worth, my husband has taken carbidopa-levodopa and amantadine the entire time since diagnosis. The neurologist thinks it prevents/helps with stiffness. He is not stiff, so she may be right.

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Hi Christine, W had to come off Amantadine as it was interfering with his heart medication. He isn't as tired now.

Sinemet has been put on hold until after we come back from holidays at end of May.

Thanks for your help. xx

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Yes. The neurologist said it doesn't often help PSP patients. But, like Christine, Chris did not have stiffness and felt it helped. No side effects.

xx

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Thanks Jean. xx

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Hi Jean, we met with GP today and were told that the Neurologist had suggested Sinemet to help with W's fatigue. However since W stopped taking Amantadine he still feels tired but doesnt get that extreme fatigueness. So GP has decided to leave things as they are and review W again when we come back from holidays at end of May.

Thanks for your help. xx

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Sounds sensible ! Enjoy holidays.

love, Jean x

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Thanks. I was going to cancel hols as I didn't think I could manage W on my own. But our daughter has been allowed time off and she is coming with us. So now looking forward to it.

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Good. I think its really important to have these experiences. They will be such good memories to sustain you.

xx

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Thanks Jean, it's all down to you and the rest of my online family here who have taught me to do this. xx

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Leon was put on sinemet and it did irreparable damage. He had to been weaned off after 3 years.

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Margh, can I ask what the damage was. If you'd rather not say, I understand. xx

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Hi there, Leon had severe spasms, he was originally on 1x3times a day, and Nuerologist increased it to 2 x 3 times a day, he had constant spasms, until he thought he was having a heart attack, his sternum was so so sore. He now has all left side effected, like he has had a stroke, which the specialists some say he has and some say he hasn't. It is difficult to know really if it was the sinemet that coursed most of his left side damage, or now as I read more and more on PSP just this dreaded illness.

Hope this helps

Cheers Marg H

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Thanks for reply, really appreciate it. Hopefully will get appointment with Dr tomorrow and see what he has to say. xx

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Margh see my reply to Doglinton above re our Drs visit this morning. Thanks for your help. xx

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Charles still takes Sinemet and it helps

Cuttercat

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Thanks Cuttercat. Hoping to see Dr tomorrow. How are you keeping? xx

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So so it is so hard to keep going when it's all so sad.

CT

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The thing is CT, you do keep going despite what's being thrown at you, you are amazing. How is Charles today? Thinking of you both. xx

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My mother began showing symptoms in 2009. She had other issues so we were busy chasing other ‘troubles’ and not focusing on the totality of her symptoms. She had back surgery December 2010, and the physical therapist tasked with post surgery care suggested she had Parkinson’s. We were gobsmacked. That was the first time a neurological problem was presented. She was diagnosed with psp in October of 2011. Her initial symptoms was falling forward, a fixed gaze and a freeze when she walked. She 7 years into her diagnosis. She is 85, eyes are fixed and dry. Cannot talk, sees poorly, was fitted with a g-tube in August of 2017. Cannot swallow hardly at all- off and on. Her left hand is permanently clenched, right arm is twisted across her chest, and she pumps her right hand. Has bouts of full body spasms (dystonia). Is on carbidopa/levodopa, and clonazepam at night.

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You know Dee, one of the cruellest things about PSP & CBD is you don't get to hope for a "good" outcome. You're damned if you do and damned if you don't: if one wants this confined and dreary life finished, you,'re basically wishing for the loved one's death. If you wish the loved one to live long and be wirh you for much longer, you're essentially wishing for your own life in its dreary state to continue as is. How can a person possibly make sense of this?? It's inhuman!

You've had a long haul, friend. No wonder you want to know how long it lasts.....

Hugs

Anne G

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Perfectly spoken raincitygirl, that is exactly how I feel. It is absolutely horrid.

Hugs

Marg H

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This is what I recall so far...Dad is 70 now

2008- stiffness, lack of balance, small hand writing

2009- stops doing usual activities and starts being tired all the time. Lack of interest in previous hobbies. Can't be bothered with stuff.

2010- his driving scares me. Frustrated with his apathy. Gets slower in day to day movements

2011- painful feet, coughing and choking, trouble walking far, apathy. Give up work ( offered early retirement as is clear to everyone he's not capable enough to be there any more)

2012- increased rigidity in arms, can't walk far, tires easily. Gives up driving. Falls start

2013- lots of falls, using a walker. PD diagnosed

2014- uses a wheelchair at times, naps a lot. Pain in neck and feet increases. Psp diagnosed. Can't travel far.

2015- autumn- carers every day. Spoon feeding starts, choking awful and constant, wheel care use frequent. Night breathing machine. To apathetic to use word boards/ speaking apps

2016- summer- peg tube installed. Day patient at hospice. Increasingly unable to move. Use of mo lift for transfers. Several uti's and chest infections. Hospitalised once

2017- cannot speak at all. Chokes on everything. Can often barely open mouth. Groaning. Sleeps most of time. Extreme double vision- needs eye patch. Lost lots of weight. Very rigid. Often seems vacant. Frequent skin, urinary and

Chest infections. Often too sick/

Tired to go to respite at hospice.

2018- on drip feeding machine. Still loosing weight. Can’t swallow at all with out choking. Spits up blood. Legs constantly contracted. Elbows bent and hands under chin. Can’t open mouth. Can’t blink. Virtually no communication. Makes moaning sound as no strength to cough. Rapid shallow breathing ( 24 breaths per minute)

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Thank you for your reply,we know the very tough and long road you and your family are on.

Hugs

Dee

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As hard as it is to put to print I do belive your dad's journey will help other.

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Good tracking there, orangezebragirl. A heartbreaking downward journey. So cruel that he lost his whole retirement life, as so many have. ❤

Anne G.

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All sounds/reads so familiar. Oh what a road we are on.

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Steve was just diagnosed first if this year with PSP by movement disorder specialist, he is 64.

This journey began almost 8 years ago, and we have been through a host of diagnosis

Back problems, low testosterone , depression, sleep apnea, dementia, frontotemporal dementia, Parkinson plus, REM sleep disorder, Lewy body dementia, finally narrowed to PSP (MRI hummingbird sign and DATSCAN )

His very first symptoms were apathy, loss of interest, back pain, aggressive behavior, loss of executive functions, deterioration of handwriting. Then, as new symptoms started, diagnosis changed.

As of now, he falls several times a week, still can walk with walker, speech is slowed but mostly clear, coughs some but still feeds himself ( I have to make him go slow), still continent, reduced blink and dry eyes, mood better (with anti-depressant ), has not driven in over two years. He is impulsive and uses poor judgement . He is beginning to be rigid in his neck and shoulder and has neck pain.

He has had PT (physical therapy) for three years, speech therapy, occupational therapy for two years.

We are lucky that we get out of the house (he loves car rides) and trying to enjoy life while we can. I stopped working a year ago to stay home and care for him.

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Hi Khartt;

REM sleep disorder..how did that get diagnosed, if you dont mind saying? Was it related to dementia symptoms??

Anne G.

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Hi Anne,

We had been to first neurologist (4 years ago) that said nothing was wrong with him. A few months later, he had an episode of acting out his dream, thought he was in a fight and was hitting me. I immediately took him back to that doctor who sent us to sleep doctor to check for sleep apnea. He did a sleep study then put him on bi-pap, said all his symptoms were sleep apnea related: mild cognitive impairment, dreams, clumsiness, etc. Then 6 months later, we changed neurologist and looking over everything, she thought possible dementia, Lewy Body, which would include REM sleep disorder. He still has loud dreams but nothing violent .

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Thanks Khartt; I've just been interested in sleep disorders and dementia/froto temporal disorders.... Hubby has always had strange snoring/sleep talky/choking sort of noisy sleep and I think this has something to do, somehow, with his brain disease.

Anne G.

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I agree Anne that the sleep problems are associated somehow with this brain disease. Steve taps a lot on his chest while sleeping, talks, yells every now and then, kicks, etc...always seems restless.

Karen

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After reading all these reply’s I would have to say Ditto,Ditto,Ditto.Since my husband passed away July,2017,I have begun to forget all these things that we went through together.But reading them all laid out here,I was thinking yes,I remember that and that and that.

I don’t think any of us could predict or foresee what would happen next,just take one day at a time.

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I kind of like the posibility I could forget these dreary details some day...Sounds like the beginning of healing?...

Hugs to you Jan 😊

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Mother currently 80. Depends which point marks the beginning: symptoms I first noticed go back to 2004 which would mean she has had it for 14 years now. Going from the official CBD dx - makes it 3 years. Timeline as follows:

2004 (66)- cognitive processing issues first noticed - had trouble walking alongside me. Would follow me and when I’d stop for her to catch up, she’d stop - often in the middle of busy streets. (Which scared the bejeebers out of me - causing me to dash back and grab her hand and pull her along.)

2005 - 2010 (67-72)- More cognitive processing problems observed - pulling up to drive-thru windows so far off as to have to get out of the car to reach. Numerous traffic stops - mostly based on judgement errors. First caught her lying to me (never had I ever seen this in my mother before). I remember calling my sister, who lived out of the country at the time, to tell her something was wrong with mom - Alzheimer’s perhaps.

2010 - 2012 (72-74) - I knew something was seriously wrong - but this began years of arguments with my mother in trying to talk about going to a doctor. Noticeable gate problems and generally way slower walking speed. (Mom was a serious walker for exercise all her life.) Personality changes - generally ruder to most people. Calling out service people in stores as dumb or lazy (generally embarrassing me in public with her behavior). Continued judgement issues (a design of a roof line peak on a house remodel was completely out of scale - and though the contractor questioned it, she insisted he build it as designed. She had designed numerous beautiful house re-habs before. I still drive by that house and have to be reminded of the ridiculousness of the design - ones of these days - I'll have it redone if I have the resources!) Mentioned her constant ruminations for the first time. Prevalent insomnia (she kept saying if she could just get a good night sleep - everything would clear up).

2012 (74) - One day - noticeable left side arm limpness and left shoulder sagging (I thought was a stroke), Mom said it was an injury from what ended up being her first fall (of many) from misjudging the edge of the bed, mild incontinence, first dx of Parkinsons/then atypical Parkinsons at end of the year, which my mother dismissed and proceeded to blame A-fib for her confusing symptoms. Took care of her heart issues via oblations (many cardiologist appointments) but symptoms remained and continue to worsen.

2013 -2015 (75-77) - The serious fall years and very difficult temperament. Noticeable decline in entire left side - dragging left foot, left arm became non functioning. Speech declining noticeably. I actually suspected a rare form of Parkinson’s at this point when she started having trouble finding the right words at times and slowed speech with occasional slurring. Falls all occurred while living alone and doing things she was advised not to do. She refused to wear a medical alert button, refused to re-design her house/bathroom for senior living, refused the lift chair I bought for her, spent a ridiculous amount of money on alternative treatments - believed she could cure herself through proper diet and vitamin supplementation. Accused me of horrible things (like me wishing her dead) - became very suspicious of me (needlessly), lied to me regularly. I was so confused and hurt at the turn in her demeanor to me - we for the first time ever didn’t speak to one another for a period (mother and I were very close all my life). She became incredibly rude and belligerent with her clients -- at times doing things completely unethically or against laws or local ordinances with a 'be damned' attitude about it when I would point out the seriousness of her actions. The official dx of CBD was in 2015. The last fall at the end of 2015 was down a full flight of stairs and she ended up in a hospital for nearly 3 months.

2016 (78) - Sister moved in with her after she was released from hospital to care for her full time. Still several more falls all with trips to hospital and re-hab stays. These items were the results of her falls: broken knee, chipped vertebrae, compressed spine, laceration above eye, broken finger. Despite all this she absolutely refused anyone’s direction or care for her safety. Started using a hemi-walker and occasionally a wheelchair and became a regular user of the lift chair I bought her. Started wearing briefs for incontinence. Accepted her dx of atypical Parkinson’s (but still rejected CBD dx). Noticed odd facial expressions, flat expressions, wide-eyed or just inappropriate expressions to the situation at hand. I took over her business by the end of the year.

2017 (79) - moved to assisted living facility due to my sister’s sudden and unexpected death. By this time she could only stand and assist with transfers to her lift chair or wheelchair. By the end of the year she is basically bedridden. (A fall at the facility while transferring from her shower chair resulted in a severely broken ankle). She had a massive pulmonary embolism that almost took her life. Was in hospital month of December. Says one word responses as it is often too difficult to form entire sentences.

2018 (80) - We considered it a major milestone that she made it to 80 last month! She struggles to feed herself now, she does choke a lot. She can be transferred to her electric wheelchair and loves the freedom but is otherwise bedridden. Her surliness to me has greatly diminished but she is often unkind and rude to her care takers. Through this all she is still mentally clear, remembers things with incredible detail - nothing gets by her . She does have trouble with processing anything out of the routine and has trouble with numbers (often misreporting her weight by up to 100 pounds). Some trouble with the calendar. But if you tell her you’ll be back next Tuesday at 3:00 - she focuses on that very well. And God forbid if you are one minute late! She has extreme anxiety and this has been a prevelant symptom going back to 2010. She has generally refused all “western” medication but does take a blood thinner since the embolism, and recently has taken a Xanax when she was wrought with anxiety. The staff have noted her extreme anxiety makes caring for her difficult at times.

Sorry for the novel - but our journey has been long.

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You've kept really good track Etta. What a long time for CBD...! Does your mom.'s neuro ever comment on her longevity?

Anne G.

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That's the thing -- mom has fired every doctor who has told her what she has. She has gone through 3 neuro doctors. First one dx'd Parkinsons, second one, atypical Parkinsons, and 3rd one CBD. After each visit she would be adamant that they didn't know what they were talking about and she'd set out looking for a different Dr. The 4th one was in the same practice group as the 3rd one -- so I had to write a long letter explaining to them why shes wanted to see Dr. #3's partner and not him. They understood (because of her dx of CBD), but we never made it in for a 4th "evaluation". At this point - she only has the primary care physician that makes rounds directly at her facility, and the cardiologist team that corrected her AFib a few years back.

I seem to be a canary in the mine so to speak, when it comes to noticing subtle changes in someone because she is not the first person I've noticed a chronic condition way before the point of diagnosis. Both of my children have rare conditions (not life threatening), and I was constantly told by the Pediatricians that I was an anxious young mother, looking for problems where none existed. 4 years later - a dx was finally made -- but no apology to me for their previous statements to me -- nor any acknowledgement of my persistence in finding an explanation for what I was seeing. But let me be clear, the delay in Mom's dx for CBD was not the fault of a dismissive doctor, it was mom's refusal to acknowledge the issues, or seek out medical care. So nobody has expressed any interest in the fact that she has had CBD for such a long period - certainly much longer than the initial 3-5 years I'd originally read about. (But I now see it mentioned up to 10 years -- which I think just means people are diagnosing it more regularly and probably sooner.)

My son who is now an adult and has found yet another rare genetic condition that runs in the family (starting with my mother as the variant gene carrier) - but he ran into the same thing with Dr's telling him he had a mental condition - not a physical one. He persisted (wonder where he got that trait from?!) though and spent 3 years researching and finally going out of state to a specialist (of which none were in our state) to get the answers he was looking for. I have gotten to the point where I really don't care about a concrete Dx... it takes too much time and money (but I've always believed having one helped with tolerance and protocol development).

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This post is so helpful to me as I am new on this path. Here is our story:

In hindsight my husband had been having problems for since at least 2014 when he was 52 years old

1) limp/foot drag ...which he said was from sciata and lower back problems, altho no amount of PT helped.

2) falls, some we saw happen, some I only saw the bruises after and he lied about. He always had an excuse.

3) personality change.. Wow, we had a hard time dealing with this. First was the severe anger and road rage. Frustration and paranoia and then in 2017 came the severe apathy. Inability to do anything and then he would blame me for not doing everything for him.

4) memory loss...he didn't know things about the kids he should have. He got lost several times going to familiar places. Relied heavily on his gps. But again he always had an excuse.

5) insomia...the sleep studies, the snore guard, the melatonin, the advil pm, the wandering the house at night.

6) struggles at work...it is truly a miracle he didn't lose his job. He blamed his boss for his bad review and lack of projects. He was a very high end network engineer and programmer, yet we found evidence after the fact that he was unable to even the simplest of tasks in his job and was searching online how to do them.

7) obsession with sexual things and dysfunctional thoughts...ill leave it at that

8) hoarding of paper items, stacks and stacks of reciepts and bills he wanted to reconcile. We found out later, he couldnt.

9) starting in the summer of 2017, inability to find words and thoughts. Stopped frequently in the middle of sentences to just stare. Driving was bad, would hit curbs and just unsafe. Was barely functional on any social or family level. He didn't tell me but i found out later he had sought counseling and tried two different anti-depressants.

10) Sept 2017- he had an unrelated surgery on his prostate. In his pre-op, he couldnt answer his health questions. Didn't understand the paperwork. We all thought he was nervous.

He never really recovered from the anesthesia. Within 24 hours of his surgery I was making every appointment I could. Primary care doctors, neuro, lawyers, bankers. I knew he was gone.

While in the process of seeing the outpatient doctors and having every test known, the doctors wouldn't believe me. He seemed functional enough. One doctor said, if he can use his iPhone than he doesn't have dementia. One doctor said, he needs a psychiatrist perhaps he has pseudo dementia and depression. At this point I was desperate. No one, including his family believed me. Our 3 teens and I were on our own and we knew something was very wrong.

The first week of November 2017, I came home and found him naked in the living room. He demanded sex and didn't care that the kids were coming home any minute. I had to threaten to call the police and then like a switch, he put his clothes on and sat quietly. That night I removed all the weapons from the house.

At that point I am literally begging for help. Doctors, family anyone. Still nothing. He seemed normal enough. Just a depressed old man I was told. Then on November 19th, the kids and I found him in a catatonic state. We called an ambulance and that night started an escalation of behaviors that involved the police,4 different hospitals, protective custody, more tests and doctors than I can even remember. Finally a hospital doctor tells me, watch this, as he performs some Neuro tests with his forehead and hands and mouth...his infantile reflexes are back. Maybe there is something wrong with his frontal lobe. I had such a sense of relief. There was finally a doctor telling me there was evidence something was wrong.

We finally got into see a dementia specialist in January. He initially thought FTD, but upon examination he saw that his eyes don't move up or down or track. (Why hadnt anyone else seen that) So we are working with the diagnosis of a frontal lobe or behavioral variant of PSP. The only abnormal test was the dat scan.

Fast forward to now. He is stable on zyprexa and trazadone. Altho I think we will need to change a few things soon. He is not sleeping and the OCD is getting worse. He lives in a locked memory care facility, as it's not safe for him to live at home. He thinks he is fine and can go to work and live at home. And he asks about that frequently. He has fallen once at the facility, but I only know that because they called to tell me. He won't admit it. He chokes on thin liquids and his voice slurs especially at night.

The kids and I visit often. We interact through simple games like checkers and uno. He can play fine, with only reminders sometimes. Conversation ability and lucidity flucuate daily. Sometimes he is so clear and sometimes he can't make a sentence. We are just beginning this journey but I feel like I have already ran a marathon. The doctor says maybe 5 years and I think that is a long time for someone to have to live that is so very broken.

Thank you for letting me write this. I had no idea how badly I needed to. One day at a time is our mantra.

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I am in awe ! What a burden you carry and have carried for so long. It puts my own struggles in the shade.

Such a sad story. One day at a time indeed.

Love to you all, from Jean xx

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Wow,you and your family have been on a mega emotional Rolla coaster already,I'm glad you found this site.

And yes you have no choice of it,one day at a time.

Dee

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Hugs and admiration, thinking of you.

Marg H

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Your mental anguish resonates with me. I was the first to sense something wrong and I was vilified for it for quite a few years - which delayed a proper dx. I’ve written before about the emotional toll on me - there were times I wondered if I’d lost it and everyone else was just fine. Mom presented well, she rejected doctors and anyone that would say anything other than what she wanted to hear (in retrospect - that indeed is the nature of the condition - and not the intelligent, loving, supportive mom I’d known all my life.). Her psychological changes were cruel to the situation at hand to say the least. Her difficult behaviors remain and I fear that this may cause problems for her in her facility.

I have to say that this group is the single reason for me being better able to cope with it all today.

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Ginger, wow - That is one hell of a rollercoaster ride :-(. I wouldnt be surprised if some day another 3 letter acronym disease joins PSP, CBD, FTD and others under the FT disease umbrella - and your husband mayl be a prime example...

Hugs to you: glad you are here :-)

Anne G.

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Hi dw123456, Leon (hubby) 1st diagnosed 2010, aged 68, with parkinsonism, put on sinemet which caused massive spasms.(Looking back had had falls 2 years prior) Actually diagnosed with PSP 2013.

Now eyes constantly shut, eyesight low level, can no longer speak (uses alphabet board)

Semi continent for last 2 years, cannot write ledgibly, constantly frustrated, Brilliant brain, slower in thinking for last 3 months, unable to pivot transfer for last 6 weeks, left arm severely contracted as are fingers, constant pain in wrist, down to 52kgs, PEG in for last 9 months, cannot tolerate anything in the mouth, constantly choking(for last 3 years), pain when urinating and using bowels last 2 weeks, body hot to touch, spike temps, feels sweaty on brow constantly,depression since 2010. Immense jealousy since 2010.(was before but no where near to the extent now), drool like turning on a tap since 2014, had Botox in cheeks and under chin 2017 which has helped immensley. Lots of phlegm constantly. Finally in care 6 weeks ago.

Hope this is of some help, as the hardest part for me was the NOT knowing what we were in for and time scope

Marg H Barnawartha Victoria Australia

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Took hubby to Dr's 2011 due to memory issues, co ordination & spatial awareness. Diagnosed 2013 CBD. Lost ability to write or read more than a few words early on.

Slow but steady decline. Gave up driving 2 yrs in. Memory getting worse all the time also dementia. Can still walk but much slower. Same with eating. Speech has declined. The more tired the more slurry and incoherent. Can hardly get a full sentence out. Needs help with everything now as right hand is as good as useless. Confusion also plays a part of that, he just can't think how to do things anymore. Still continent though had a couple of accidents in the last 4 mths. Personality very different. Complains a lot & gets angry over nothing also when frustrated. Sleeps twice daily and still goes to be 7:30pm. His right hand is clenched most of the time now. Has lost a lot of weight. Even forgets the kids names at times. Has myclonus jerks on & off all day & night now. Getting more often & more severe. Constipation a constant issue.

Been on Reminyl from the beginning then an anti depressant for mood. Been prescribed anti epileptic meds but haven't been back to GP to get yet.

Kerry QLD Australia

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Female.

First symptoms on mars 2012 (Age 68): slurred speech, some walking instability an some falls, slight tremor ring finger.

From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP.

Currently, 2018, 6th year from first symptoms:

She will be 74 on july. Always on wheelchair since June 2016 (Four and a half years after the onset of the first symptom and after the hip fracture and the corresponding surgical intervention).

Eats regular foods mediterranean diet.The food must be moderately doughy and in small pieces if solid. Add thickeners to liquids till obtain a bit glutinous liquid.

Frequent Phlegm and intense choking.

Manageable constipation and continence.

Weight controlled.

Need help to perform any function.

Very aware of her surrounding.

Communication by letters or signs. Cannot write.

Sertraline 50 for depession and Lorazepan 1 for insomnia.She does not have any pain.

Three hours /day exercises.

On bed : 10+2 hours/day.

Let me know if you need any more information.

I would like to know the result of this survey.

Greetings.

Luis

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Hi Dee, I am glad you asked this question. I get it that everyone progresses differently but for me I find it helpful to hear others progression. I also find it therapeutic sharing my dads story, so thanks for posing the question.

My dad has PSP and is 75.

First concerning signs January 2015, bowel and urination issues and unsteady gait.

July 2015 developed Sepsis from severe UTI. Unable to live by himself after this. Additional symptoms at this time, significant cognitive decline and gait. Stroke diagnosis.

October 2015 as we were cleaning out his house we noticed broken up kick boards under kitchen counter. He confessed that he had been falling a lot over the last year and hooking his foot under the cabinet to catch himself.

Slow but steady progression for the next 2.5 years. Choking, coughing, speech, stiff neck muscles, vision problems.

June 2017 placed in nursing home because of so many falls.

December 2017, PSP diagnosis. Since this hospital stay he has not had any abrupt declines just steady progression. Currently wheelchair bound, 2 person assist to move otherwise, speech is just a soft mumble, going for a swallow study Tuesday to see if peg tube is next. I should note, the hardest part, he is fairly with it cognitively. Sorry so long but like I said I find it therapeutic to tell his story. Especially with people who know what your going through.

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Here are two posts about stages/phases:

brainsupportnetwork.org/psp...

brainsupportnetwork.org/fou...

Robin

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These are very clear articles about the stages. Thanks for posting them.

Richard

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Survival time in PSP is based on which type of PSP you have. Here's a post about a major study that discusses survival time for the two main types of PSP - Richardson's syndrome and PSP-parkinsonism:

brainsupportnetwork.org/cli...

In the major study, figure 4 and table 3 are related to the survival time question:

academic.oup.com/brain/arti...

Robin

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Thanks Robin: always appreciate you contributing the science perspective. 👍

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