Routine visit with neurologist today - dif... - PSP Association

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Routine visit with neurologist today - different diagnosis?

journeyofjoy
journeyofjoy
49 Replies

Sandy had his routine visit with the movement disorder specialist today. Didn't learn anything new. I'm always hoping someone will give us a prognosis. Once swallowing problems begin, he will have an idea of where we're at (supposedly). He previously diagnosed him with PSP with CBD (or CBS) overlap. Today in his notes, he indicated corticobasal syndrome as the diagnosis. I know these two are nearly impossible to distinguish, one from another. Sandy's left side is affected much worse than his other side. I'm not even sure if the right side is affected. I guess it doesn't even matter which of these is the culprit and we'll probably not know, and the treatment is the same so not necessary to know...I guess.

He said some of his patients have had this 7-9 years but that's about the maximum. However, some people on this site have indicated it's been going on 15 years. Any thoughts on this?

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Christine47

My understanding is that accurate diagnosis can only be done through brain autopsy. And I agree with you, it doesn't really matter since there is no treatment and no cure as yet. And treatments only deal with the symptoms, not the disease. The one thing that is consistent with all these neurological disorders that does seem to help is exercise.

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journeyofjoy

That's right. The only way to know for sure is through autopsy. My husband can't walk so there isn't much exercise he can do. I suppose he could be doing some hand/arm work with the one arm that still works although he's not motivated to do it. It would be one more thing added to the chore list.

We keep on going! Life is still good!

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Christine47

I have been blessed. My husband was a runner as his form of exercise, so some type of exercise was done almost every day of his 80 years. So he wants to exercise. We have a recumbent bicycle which he was using until last year. We have a little "Pedal exerciser" which he uses now since it is a challenge to get on the bicycle. We do a series of a variety of exercises -- physical and neurological -- almost daily for about 45 minutes. Can't hurt, might help.

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journeyofjoy

That is great! Keep it up. Moving as much as possible is good for all of us.

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Katiebow

I gave up pushing Ben to exercise it was almost more than he could bare, poor chap. I remember do circuits around the house with his walker having to press him all the time as he really didn't enjoy it one bit. It all got too much in the end and I let him be.

Love Kate xxx

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Zibo
Zibo
in reply to Katiebow

)o:

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Kevin_1

There are folk on this forum who have suferred for 14 years and more. Others who never made 5 years. It is so very variable.

Sometimes there are periods of swift deterioration and (usually followed by slight improvement at the end, and sometimes it is slow.

It is an emmotional rollercoaster.

But, you seem to be doing very well with the care despite all. Nodding in repsect.

Warmly

Kevin

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Jeff166

Larry’s physical therapist told us she had a client who was 14 years into PSP. Think longevity depends on how healthy the person is otherwise. The only thing Larry has at 71 is PSP.

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journeyofjoy

Yes. I think my husband is pretty healthy other than this. He does have a multiple sclerosis diagnosis (although that doensn't appear to be very active now), normal pressure hydrocephalus (although surgery took care of most of that), and severe spinal stenosis and compression.

I guess that doesn't sound very healthy but I believe his heart is good. The fact that he can't walk or even move a wheelchair on his own seems like it will take its toll.

The doctor says he can give a prognosis when he develops swallowing problems, which he hasn't so far.

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Denisejoy1

Hi, my mum was diagnosed with PSP last August after 4 1/2 years of trawling through consultant appointments with every specialist imaginable. I notice you say Sandy has NPH and a shunt fitted, also spinal stenosis. My mum also has both of these, and had her back operated on and a shunt fitted. With hindsight I think both of these diagnosis were wrong and it was all part of the PSP. What do you think?

5 1/2 years on she is still with us, she is 84 now. Her condition has deteriorated rapidly in the last couple of weeks and I too can’t help but wonder how long this will be, for her sake as I can’t bear to watch her gradually become more and more incapacitated. It is breaking my heart 💔 other than the PSP she would be as fit as a fiddle with no heart issues, diabetes etc. She would be one of the ladies in the community that helps ‘the old people’!

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Zibo
Zibo
in reply to Denisejoy1

I so understand, with my mother in similar condition and age. Sometimes I wish this illness took her away, as she is no longer the person she was. No wonder she gets irritated, she was the most incredibly active woman! Sending you a e-hug and waves of strength to be with all we need to be with.

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Denisejoy1
Denisejoy1
in reply to Zibo

Thank you & same to you 💫

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journeyofjoy

Denisejoy,

This is interesting. I think I've heard of others who had spinal stenosis and at least one who had NPH. It certainly seems like they could be part of PSP. I doubt if they'll ever come up with a solid answer on this but what are the chances of having all three of these conditions?

The spine surgeon wanted to do a lumbar fusion and said there was 100% chance of Sandy losing his ability to walk unless he had the surgery. We looked into it and backed off. Got a second opinion and that doctor said with the PSP, the anesthesia alone would be very dangerous. I'm glad we opted out because as it turned out, he lost his ability to walk within two months anyway.

I'm looking forward to getting hooked up with palliative care, which we are working on. They will concentrate on quality of life, not cure.

I hope and pray your mum and you have peace and some enjoyment in your days. People talk about wanting to live such long lives, but at what cost?

Joy

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Boyce3600

how was it finally diagnosed

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journeyofjoy

Are you asking what the diagnosis is? PSP. In the clinical notes, he wrote PSP with CBS overlap. This was a few months ago. On a couple of other visits, he noted CBS.

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Boyce3600

No actually I wanted to know HOW the diagnosis of PSP was made. some people talk about dat scans , pet scans, MRIs that show the hummingbird ,Etc I was wondering how this neurologist decided that it is PSP

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journeyofjoy

He had pet scan, dat scan, MRI's. His did not show the hummingbird, however, the doctor said that the hummingbird only shows up in 25% of the cases. You can also have the hummingbird and not have PSP. And observations give them more info. The fact that he didn't respond to carbolevo rules out PD although he continues to take it.

What is your husband's diagnosis?

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Denisejoy1

In our case, I read up the symptoms on the PSP website and they fitted my mums profile so closely that I requested the medics take it into consideration then, after all the years, hey presto we had a diagnosis 😳😱

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SewBears

The longevity of the disease can sometimes be prolonged based on decision points. Some patients will do whatever it takes to stay alive and others will refuse treatment. It might come down to quality of life and the choices Sandy makes ahead of time. It’s best to have a Health Care Directive in place so that you understand Sandy’s wishes ahead of time. If you haven’t become Sandy’s legal Power of Attorney for medical and financial decisions yet, then it’s a good idea to get that setup. Also, review beneficiaries on any retirement funds and life insurance policies. This can be overwhelming and depressing, but if you know the answers upfront, it might help you feel more in control and less afraid of the future.

It wasn’t until after I had everything in place that I could appreciate today and live in the now. Try not to worry about how much time you have but enjoy every moment while you can.

❤️ from I SewBears

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journeyofjoy

I think that's a good point...that once you had everything in place, you could appreciate today and live in the present. I have difficulty living in the present, always thinking about how I'm going to handle the future. Useless thinking.

The thing that weighs on me (and probably on most of us) is that if I knew he only had 2-3 years, I would hire more help. If it's going to go on a long time, I need to conserve resources. I don't want to get to the end and feel like I cheated us out of an easier life by not getting enough help, but don't want to deplete resources if we're in for a long haul. Yesterday the doctor said you have to look at this in quarters...what you need now...not what you might need in a year. His financial situation is probably a bit different than mine...ha

Do you mind telling me where you live? You said you're 5 hours from San Diego. We're in the Seattle area.

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SewBears

My husband used to handle all of our finances and just had a way of telling me when to cool it for the remainder of the month. He had a knack for it and I didn’t have to worry or even think about it. Now all decisions are up to me and sometimes I feel like I don’t have a clue what I’m doing. Other times I surprise myself with my own ideas 😂. I get a little upset when hubby asks for something new that I know he won’t be able to use and I find that I’m the one that has to apply the breaks now. He can pout so sweetly that it’s hard to tell him “sorry, not today but maybe later”.

If only we had a crystal ball to tell us how far we need to stretch what resources we have, or in our case, don’t have. I think you will not feel cheated if you spend as much time as you can with your loved one and hire help now and then just for yourself as a respite. I’m in this for the long haul but I keep remembering “he who dies with the most toys win”. So occasionally I splurge on something that makes our life a little bit easier.

We live just outside of Las Vegas NV. A suburb in the mountains called Henderson. Too bad we aren’t closer.

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journeyofjoy

I've always been on top of our finances so at least I don't have to learn something new. However, I like my husband's input on decisions which he's still able to do.

It just seems with all the chores that need to be done to take care of him, the house, paperwork etc., there's not time to just be together. I have to figure this out so we don't both have regrets.

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SewBears

I let some stuff go and take baby steps. I don’t try to do everything at once. Sometimes it helps to make a list and start with the easy things first. Check the chores off one at a time to feel like you’ve accomplished something. I’ve been putting off changing the filters in our air conditioner long enough so maybe I’ll get to that today. I will be satisfied if that’s all I can get done and I will give myself a pat on the back for trying.

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journeyofjoy

I have always had a lot of energy, juggling lots of things. I find now that if I have low expectations, only plan to accomplish one or two things, I have a better day.

I'll give you a pat on the back if you get your filters changed and if you don't, you get a pat anyway.

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SewBears

I’m the same way. Multitasking is my middle name. But I’ve learned to appreciate my time better spent doing what I enjoy. My grandmother used to recite a poem to my mom when I was a baby and I tell all new moms this poem. It kind of fits when taking care of loved ones too:

Cleaning and scrubbing

Can wait till tomorrow

For babies grow up

We learn to our sorrow

So settle down cobwebs

Dust go to sleep

I’m rocking my baby

And babies don’t keep

Author unknown

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journeyofjoy

Yes, I'm familiar with this one. Time goes by..quickly.

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SewBears

I put the replacing of filters off once again. Shoot! I just don’t look forward to standing on a ladder nor cleaning the sticky lint stuff off of the metal grate thingy’s. Why are they white anyway, who’s clever idea was that? Granted, I’m only 63 years young and I like to think that I’m stronger than a horse, but if I break... then what? This is just a chore that I dread. Maybe I’ll be able to pat myself on the back tomorrow. Thank you for giving me that pat even though I didn’t deserve it. This is still on my list of things to do.

Cheerio!

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journeyofjoy

You deserve a pat. You got through another day! I'm 63 years young too (until my birthday next month) and I'm strong and healthy. I am pretty careful these days though because I need to maintain my health to care for my husband and I want to come out the other side with my health intact. God willing.

I have to say that I'm looking forward to turning 65. Medicare will be a huge help.

Cheerio!

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SewBears

Hard to believe we’re in the same boat!

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SewBears
SewBears
in reply to SewBears

Two times in my life I wished I were older. 16 so I that I could u-hum “legally” drive, and 65 so that I could have health insurance. Right now I feel like a second class citizen. This is the first time in my life that I have not had health insurance and it scares me to death, just adding to the stress of everything else. But... I must live for today and not worry about tomorrow.

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journeyofjoy

I am learning how to live in the present but it's not my strong suit. I worry about what the future looks like but even without PSP, there's no predicting the future. My husband is nine years older so he'll turn 73 next month.

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SewBears

We have much in common, that’s all I can say right now. I’d like to meet you one day.

❤️

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journeyofjoy

Me too. Maybe we will meet up someday. At least we're on the same side of the pond. In looking at your profile, it seems our husbands have started this journey around the same time. Sandy was diagnosed in April 2019 and I think his symptoms started about five years ago. You never know for sure. In reading back through the doctor's notes on the chart, it looks like he has gone back and forth between PSP and CBS as far as diagnosis. Will never know for sure and it probably doesn't matter because there is so much overlap.

Have a peaceful night.

Joy

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SewBears

Filters changed ✅

🥂

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journeyofjoy

Good for you!! Now go have a glass of wine and a nice bubble bath..

I've been at my desk most of the day working on paperwork. The fun never ends!!

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Boyce3600

gosh ur decision quandries parallel mine to the T. My husband has a long-term care policy but it is a finite one. While I am very, very grateful I still have to watch how much is spent because when the pot of money is gone, it's gone. No neurologist will give me a prognosis. I feel he has PSP but they won't do any testing cuz if we found out it was something different the treatment would be the same ....just like u said. That is such a copout for them. They don't want to find a cure because if they do it would not be a moneymaker for FDA or anybody else it's just like cancer even though they work on that. I'm very very frustrated I'm supposed to be in the best place imaginable for medical care , at least around Texas and yet the movement disorder specialist himself or herself never lay eyes on the patient except possibly once a year, maybe even less. that's so ridiculous for such a devastating disease I guess I wouldn't want to show my face to a patient either if I couldn't tell him anything else that would help. Thanks for letting me rant

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journeyofjoy

They don't want to give a prognosis because they don't really know. Our neurologist said usually 7-8 years from onset and the other day he said you will know more once he develops swallowing issues. There aren't any tests to determine whether someone has PSP. They just observe and test everything they can think of so they can put it together and give it their best guess.

The neurologist the other day said we're probably 200-300 years away from a cure basing it on historic cures for diseases. He said if we're lucky, 100 years, an entire generation. We see his neurologist every 2-3 months. Maybe they'll stretch it out longer eventually. I don't know.

Go ahead and rant all you want. Sometimes it feels good.

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journeyofjoy

This is so important, I agree. We just updated our wills, health care directives, and all legal paperwork with our attorney a couple of months ago. We are in the process of dealing with updating financials now. I will double check on beneficiary information. Sandy doesn't want any heroic measures taken to keep him going although he could change his mind later.

Right now, he enjoys life. He doesn't have dementia, he gets up every day and appreciates people, food, baseball, TV. And best of all, we're expecting our first grandchild in November. Such a blessing to have her coming at this time.

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Javan

When the old bag was diagnosed she was told five years, she decided right away to forget that and carry on as normal. It is now more than double the time, so forget time spans and just carry on as normal.

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SewBears
SewBears
in reply to Javan

She sounds like a real trooper! I like what you say about forgetting time spans and carrying on as normal. Whatever anyone’s “new” normal may be.

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journeyofjoy

Yes, carry on as normal. I agree. Got to get to the point of having as much enjoyment as possible. Tired of spending all of our energy on doctor appointments.

By the way, what does she call you? haha

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racinlady

I've got to ask. . . .Are you accomplishing anything by spending energy on Dr appts.? I know I felt better when we went for appts because I liked being reassured that I was doing the right things, but it was a struggle for my husband and he finally said, "I'm not going back". I can't say it made a bit of difference. That was about the time I started using hospice for some of his personal care. I also started using some part time help. We lived an hour away from any services so just getting groceries was a chore and my husband got so he refused to go with me anymore. Finally, it wasn't safe for him to be alone.

I really get what you're saying about wondering how long it can go on and wanting to conserve your resources. That was always my biggest worry. I was a planner by profession so not knowing what the future looked like was always hard. When I started stewing about that, I started using some part time help so that I could have some little part of a life for me. I think this is so important that I urge you to try a little help at first and gradually add more as you need it, which you will in time.

Pat

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journeyofjoy

Pat, I think we're narrowing these appointments down. I believe the testing is done. There's no need to see the MS neurologist any more because he's certain that MS is not playing a role in this. So, we're down to the movement disorder neurologist (probably every 3 months). But, we may stop that at some point too.

He had a botox injection two days ago for his big toe that sticks straight up. That night, he had severe pain in his leg that eased up during the day. Again last night, his toes were terribly painful. Three Ibuprofen do not cut it. I have a call in to hopefully get him something stronger until this goes away. The doctor said he'd never seen anyone with such tight muscles - so tight it bent his needle when giving the injection.

We could better use some of this energy for doing something good for ourselves, like a stroll around town or going out for lunch.

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racinlady

It sounds like you're working things out and will do what fits your needs best. I wish you luck on your journey.

Pat

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Javan
Javan
in reply to journeyofjoy

Usually master or is it git.

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LuisRodicioRodicio

Thank you all for sharing your experiences, feelings and thoughts.

A big hug

Luis

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journeyofjoy

A big hug back at you.

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Katiebow

Ben only lived for 4 yrs after diagnosis but I could see how quickly he was deteriorating and instinctively knew he wasn't in for the long haul. He fell and broke his hip a year before he died and they wouldn't let him out of hospital unless a care package was in place so that and the decision of having careers for me. Xx

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Nat08

I have no idea hun sorry.

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