What year are we in?

I read many posts on this site wondering what stage people are at. I’m wondering what year I am in with Larry. Looking back it seems the fall he had in Fall of 2011 was the first indication for me something was wrong. If that is true then he is beginning year 7. If he is beginning 7 he is in pretty good shape. Reading Grace_Girl’s post of several days ago about her sister’s sudden decline I know wonder if this will be Larry’s course. He’ll be more or less stable until he isn’t? With everyone who has this disease goes through it differently it leaves me wondering what’s next and when? I am noticing ever so slight declines in eating ability and speech.

[easterncedar]

So hard to generalize with any accuracy, but I believe a slow decline may continue at that rate for a long time. However, now would be a good time to ramp up activity - PT and speech and swallowing exercises. Walking, socializing, having fun, too. When these become obviously needed is when they become very hard to learn and do. Best wishes, Ec

[Hidden in reply to easterncedar]

Larry’s had 4 years of physical and speech therapy. For the most part it been in one ear and out the other. He performs very well for them during a session. Once out the door he does whatever he wants to do. No amount of cueing on my part makes any difference. The concept that it is to his benefit that he use the techniques he’s been shown hasn’t gotten through to him. At one point during a physical therapy session his therapist turned to me and told me I had the patients of a saint. Don’t I know it.

[easterncedar in reply to Hidden]

Oh dear, I'm afraid that was similar to what we faced. My guy was as obliging as he could be, but every exercise we did at home required coaching through step by step - we did them together as much as I could, and it was fun for a while. He couldn't retain enough for much independent movement. Some. It came and went, and he was better with others than with me. In the end, you can only do so much, and basically it's all a rear guard action. Nothing is worth making anyone unhappy over, that's for sure.

My guy was the one with the saint-like patience, I'm afraid. I kept hoping I'd learn some, and said he wasn't allowed to leave until I became a better person. That job wasn't finished, and here I am, filled with regrets for my crankiness.

I do wonder whether the relative slowness of Jeff's progression might be due to your getting him started so early with the therapies. I think the advice to get those things going as soon as possible has to stand!

[Hidden in reply to easterncedar]

The great thing about this site is I get talk to people who KNOW!

[easterncedar in reply to Hidden]

That is it, for real.

[AnaBri in reply to easterncedar]

I thought it was just my mom, she never wants to so her physical exercises. We've tried but she always has a good reason not to do it. And she performs better with others also, she takes a feew steps assisted with others, won't take a single step with us.... Maybe is another symptom. Who knows... She's deteriorated rapidly, we're no sure what year she's at, at least I don't want to take track, in my mind it means she has less time with us. So I try to stay focused on the here and now.

[easterncedar in reply to AnaBri]

Yes, it's PSP. I concluded that there's a subconscious heightening of mental activity with strangers that helped my guy perform for therapists what he couldn't do for me, not that he wasn't trying, really. I'm sorry about your mother. You are wise to keep that focus. Love and live for the day. Peace, ec

[NannaB]

We were told by the neurologist that my husband's life expectancy was 5-7 years from diagnosis. He had showed signs several years before that. He died 6 years and one month after diagnosis. Everyone is different. Infections can speed things up. Don't worry too much about what is to come, other than being prepared, but make the most of what you can still do together. If you can, do it now, don't wait.

X

[easterncedar in reply to NannaB]

Almost exactly our story. 6 years, 5 months after diagnosis, but first symptom probably at least 4 years before that.

[Heady]

There is no rule for PSP! I am sure my husband was showing signs of his spacial awareness going 20 years before he died. Who knows how long it had started before I was even aware. like EC says, get the physical and speech therapies going NOW, they don't stop the march, but it does help.

Lots of love

Anne

[Katiebow]

Wish I could give you the answer, I am always wondering where we are on this journey. Ben had a massive decline over the past few months but seems to have stabilised at the moment . He doesn't want medical intervention so trying to keep him free of infections and he isn't able to walk so the risk of falls has decreased significantly. Wish I had a crystal ball or maybe not!

Love Kate xx

[doglington]

Same as Kate now. Chris was diagnosed 4 years ago. He had shown major signs for 2 years but I keep remembering earlier signs. A neurological disease develops very slowly.

Chris was declining very slowly until 2 months ago. Then a chest infection and dramatic fall. He is nearly 84 and I think that is a factor.

I always say to make the most of now. Today is all you can be sure of.

Love and good luck from Jean x

[Ratcliffe]

David died only 2 and a half years after diagnosis, but he actually died of old fashioned old age/heart failure with PSP as a secondary cause.

However timeline wise, I think he had had the visible symptoms of PSP, the falls and stiffening up when sitting etc for between three and four years before that. I found a photo dated 2012 the other day, and it's from a time where I know he was struggling but had no visible symptoms, so I think he had had it for about 5-6 years before he died.

He had been deteriorating rapidly in recent months, and had started doing a lot of the zoning in and out of alertness. I think a car accident pushed David along at the end as only five weeks before he died the ambulance taking us to an appointment was rear ended by a similar sized vehicle. He was always so tired after that.