How long?

[justsharing]

Can I ask how long have you all been dx.and how quick. You went down hill?...Trying to prepare myself.

[zjillian]

When I really think about my husband and his symptoms I saw signs in 1983; he was first diagnosed with Alzheimer's in 2007 but it was later changed to PSP about one year later. So post diagnosis time has been 7 years. He is now 100% disabled, still walking but extremely demented needing 24hr supervision and help with all tasks. Vision and balance are major problems.

It is a subtle slow process and you have time to keep adjusting. Also everyone is different. I think it is good to anticipate the money end of it, e.g.--do you have enough to live on, do you have enough to purchase additional help, and what are alternatives if it becomes impossible to keep caring at home. But as for symptoms I felt just dealing with the present was best for me and realizing that as he changed I would need to keep changing to meet the new normal. One woman made for herself a small ritual every time there was a significant new loss of function to grieve its passing. Seemed like a good idea but I never did it. The grieving process is impossible and that is one of the hardest parts because they are there and not there at the same time.

Jill

Costa Rica

[Hidden]

My husband was diagnosed in March 2013 but had had symptoms since July 2010. His sight is now very bad, he is still walking with a stick but has great difficulty getting up from seated position and sitting down again, getting in and out of car, etc. He is incontinent and his neurologist was shocked when he became urinary incontinent in June this year as she thought it was 'too early' for that to happen. So far his speech and swallowing are not much affected. Median (average) time span from first symptoms to death is 7 years. However, and this is very difficult to get your head around, PSP affects people on a highly individual basis. The progression varies widely from one person to another along with the symptoms displayed by those with PSP. As is written here regularly you really do have to take it one day at a time, which is another thing that is hard to come to terms with. Good luck.

[wifemo]

The length of time will partly depend on traumatic events. Each infection, fall leading to a bone break, sudden shock seemed to tip Tony down one more step, then plateau until the next one.

Time from diagnosis to the end was about seven years but, looking back, the signs were there to be seen (but not understood) many years before e.g. emotional withdrawal, general apathy compared to how he was when I first knew him. Early signs are often put down to age / passage of time, but too late we learn the lesson to live in the day.

The mantra on this site - Live one day at a time - should be for everyone!

Thinking of you

Mo

[jimandsharynp]

Justsharing, This disease is not a one-size-fits all disease. Every patient is different. Death can be early on or late. Like all of us there are no known dates/times of our death. I'd not worry about how long and concentrate on the "here and now". What challenges you get in a day are enough of a challenge without worrying/thinking about "how long". Some patients rally just when the family thinks death is at the door while others die without warning. Love and care for your loved one and don't worry about "stages" or "what's next?". IMHO Jimbo