General comments about PSP

[Jotro]

What is the life span of folks with this disease? I have had it for about three years and was diagnosed in summer of last year. Before that I had strange symptoms that no doctor could diagnose. Today my walking is terrible as is my dizziness when I get up in the morning. It is as if the view in front of me is dropping violently. It diminishes as the day progresses but never disappears totally. Also, I am weak in the morning even though I can lift 410 pounds on the inclined leg press machine for a total of 60 times, 30 at a time. My power goes to hell when I get up but later in the day it returns at the gym but with slight dizziness still there as I stagger from machine to machine. It is not weight lifting but seated resistance training at a rehab gym. If I tried this while standing I would fall over quickly. But the training allows me to quickly correct my gait when I am starting to fall. I seldom fall any more but do stagger a lot. When I do fall, it is like I am a tree falling with no knee collapse to break the fall. I got a lot of huge bruises on my back because I seem to automatically rotate when I fall. I do not how I do it. It seems to be an automatic reflex and it is great because falling on my back is better than falling forward and smashing my face. PSP victims, I have been told, fall backward but I always fall forward or sideways while correcting in mid-fall to a backward or close to backward fall. My blood thinners from my cardiac Doctor do not help the bruising ~~.(I had a triple bypass in August of last year). Any way, let me close by saying that my doctor said that mild odd symptoms of PSP get worse after cardiac surgery and it is then able to being diagnosed. Good luck all.

John

[Amilazy]

John sorry to hear your story. PSP robs coordination and then bit by bit learned functions. So weights are good for strength but if you are doing them on a press your brain only has to organise leg or arm muscles. The more exercise the better at holding the condition at bay for longer.

The old average was 5-7 years after diagnosis but this was in days when PSP missed so a lot of early deaths to counter the early diagnosis who lived longer some well over 10.

My own feeling watching my wife is with care the life span is longer, but saying this I also think (confirmed in some Med studies) that PSP is a spectrum of different conditions some more aggressive especially if starting in forties/fifties and slower burns if starting in the seventies.

Good luck Tim

[Jotro in reply to Amilazy]

Thanks for the info. You have more useful thoughts than I have and it is good to hear them. I was thinking of another year of life at best and now it looks better in that PSP is not as aggressively rapid as I anticipated. At 70, something much kinder will probably terminate my life like dying in my sleep like my dad did. We only live so long but knowing how we shall die is worse than not knowing. My really great wife is a retired nurse and my best friend in all things so my care is superb and I am fortunate to have her for a soulmate for 48 years.

My best to you and your wife

[daddyt in reply to Amilazy]

Hi Amilazy, I was diagnosed just over three years ago. You'll get different answers as to the longevity of someone with PSP. There are many things to consider ie. how old was the patient when diagnosed (I was 57), are/were they active, level of physical fitness and so on. Upon my diagnosis, I never asked what most would consider the relevant question... how long? It's not denial, but I think if you have a number in your head... it'll work against you. Everyone is different, I have met others with PSP... two who are in their 13th year. Don't let this disease define you and live and enjoy life as well as you can.

[Amilazy in reply to daddyt]

Thanks daddyt glad you are still fighting, agree with your comments about state of mind and fitness. M liked the idea of a number as a marathon mile marker to cross and get as far on as she could. Also a line made us aware of shortness of time to do the "bucket list" things most of which we fulfilled before mobililty and swallow lost.

Best wishes Tim