Impcrovement

[Jotro]

How soon after diagnosis which comes after falling often do the symptoms get really bad? I was diagnosed over a year ago and so far vision therapy has improved my forward eyesight 45% and I read very well. The only thing that remains is double vision when I look hard to the side and my balance especially in the morning which diminishes in an hour or two. I dread the severe effects and am fighting them with eye therapy and the gym and anger at the disease. Any thoughts?

[easterncedar]

There's no way to predict, I think, as everyone is so different, but I'd say from your ability to organize yourself to fight you are in better shape than most. My guy was diagnosed 5 years ago. He is actually pretty healthy still, but cannot walk unsupported and is losing his ability to communicate. He was never able to attack the symptoms on his own as you are. Keep fighting! The research is making progress, and although it will likely be too late for us, it may come in time for you. Here's hoping, love and peace, Ec

[Jotro]

Thank you for your comments. That gives me hope for at least for five years or more. At age 70, I may die of something else any way that is kinder like dying in my sleep as my dad did.

[easterncedar in reply to Jotro]

no one gets out of here alive, that's for sure.

[Christine47]

I agree with EC. My husband was diagnosed about 4 years ago and I don't know how his progression compares to anyone else. I think one advantage he had was his diagnosis was immediate so treatments started right off. He is 77. "On paper" he is healthy, his leg and arm muscles strong. He still works, though he says his cognition is slower as well as his fine motor skills. He has not been able to write legibly for at least four years. He walks supported. Core exercises are really beneficial. His eyesight is his biggest concern now. Double vision is an issue, though helped temporarily with acupressure. We are going to start Brock String exercises this week. If that helps, I will let you know. I would love to know what eye exercises you are doing. He still eats regular meals, though thin liquids are an issue. There have been plateaus throughout this journey. We do everything I can think of to stop the progression and can only deal with the symptoms as they arise. And I have kept a diary of his journey which I give updates to his neurologist on every visit. Hope this helps.

[Jotro in reply to Christine47]

Thanks for your insights. My eye therapy consists of complicated procedures involving 3D mostly. Check with your local rehab facility. The other procedures are 2D and get involved and are hard to describe without pictures. All the best to you.

[abirke in reply to Christine47]

Christine I am very interested in the Brock String exercises that you mentioned. What are they? For the eye or other part of body. Good luck

Jotro, B was diagnosed in '13. the first thing to "go" was his balance and writing....Strangely enough it was his parent's bank in Arizona who recognized his diminished writing as they were wondering who was signing the checks he wrote. Upon diagnosis the dr. confirmed PSP when he did a downward gaze test....and even before diagnosis, B quit his job because he was falling off the ladder so much...3.5 years later he is still able to walk but uses wheel chair to get around (Occasionally the walker when it's to the bathroom). We go to the gym (tho he does not want to anymore) to work his muscles and joints....I have noticed his musculature has diminished and does not lift as much as he used to....He rides a stationery bike that has a chair like seat for comfort and stability.....it's really good for muscle memory and joint strength.

Like EC and Christine said the progression is different for everyone but exercise is great for everyone...even if modified....

Jotro, I would not worry so much about dying. I would worry about how to take that next step and not fall! Dying is a thing we all do...You sound like a person full of energy and positive outlook, keep that up and no matter what the progression , you'll be a lot healthier....

Sincerely AVB

[Christine47 in reply to abirke]

The Brock string is for the eyes. Simple, nifty device. You can find some videos on You Tube. I was researching Vision Therapy, which seems to be different exercises than D has been doing and the Brock String was mentioned. I will keep you posted if it helps.

[abirke in reply to Christine47]

does D have much motion left in his eyes. Bruce's gaze is straight up with very very little movement

[Christine47 in reply to abirke]

Yes, his eyes do move. He has always been able to look left and right, though now not smoothly. Looking down was OK, less now. But his peripheral vision is so good he did not know his eyes weren't moving.

[abirke in reply to Christine47]

His vision sounds fine compare to B;s . I do hope this new therapy works

aVB

[Jotro]

Eye therapy

See above.

[Lieve]

My dad is 84 now, been diagnosed about 4 years, eyes seem to be ok for now, still walking very slowly with his walker in the house, some days his legs are 'tired' and he stays in his wheelchair. Has to be helped in/out bed, or to get up from sitting, has a lot more phlegm & coughing, eating mostly mashed/blended foods, thickener in liquids, but can manage cake! He has lost a lot of weight in 2 years, about 20lbs, so the doctor is keeping a close eye on that. I think I'll make another batch of tiramisu soon, perfect food for him (without the raw eggs though, too risky in his state). He still works on his computer although it wears him out quickly. All this to give you an idea of someone else's progression. Good luck and just know we are all with you through this x

Lieve

[steph02]

I;m afraid that you can't tell the progression of this disease every one is different and there are variations of PSP I was diagnosed about 3 years ago after 5 years of atypical parkinsons I am generally ok but falling more often now, still in denial of this psp but reluctantly beginning to accept that I cant do things like before. none of the drugs work so i don't take any. guess you just have to wait and see what happens.

[smallshaw]

I have also just been diagnosed so I am in the same boat as you!! These replies seem to come from women who men have got the condition. Are you a woman?

[sasmock]

My dad first showed symptoms ten years ago, but was only diagnosed this year, when his vision deteriorated and the falls were really frequent, they finally did a DaT scan. He can still communicate, with help, and get around with help, and feed himself, no choking, etc. I'm a nutritional therapist and have done lots of reading about cognitive nutrition, and applied quite a few dietary tweaks and supplements. I don't know if this has helped or not, no way of telling I suppose! Thank you for sharing about the eye therapy...off to look it up now...interesting!

[Kylie4951]

These replays are all wonderful! Thank you all for responding for jotro! My guy was diagnosed in 2011 and just went to heaven in July. He was 73. But you all sound much better than he ever was ! I think once his eyes prevented him from driving he just gave up a bit and just figured it is what it is get in with it. He did not exercise too much and that hurt him I think. We had home health but not aggressive enough. We have a treadmill which he did for a while then stopped. Hated it. Don't any of you give up!!! You are doing great!!! Yes it is terminal but you are all doing well. One thing when progression. Starts it usually is good sized and then the steps downward may come quickly. But activity and exercise are the key. Enjoy life. Don't just sit and wait. God is good but some times it's hard to understand His plans.