Jumping into PSP

[Sonse]

Father was diagnosed with PSP after many years of being misdiagnosed with different diseases. Trying to equip myself with all the knowledge I can get about this disease.

[easterncedar]

Hi! You gave come to the right place. I have found this community a wonderful source of practical advice, solid information and much-needed emotional support. Psp is a difficult diagnosis, as it seems each person is affected differently and the rates of progression vary. My sweetheart was diagnosed over 5 years ago. It was frightening at first, but if you have many years looking for the diagnosis, perhaps it is not such a shock for you?

Ask any question. Someone is usually able to answer or point you to the information. The search function is handy, but the current discussions help everyone, so it's never bad to start with that!

Best wishes, easterncedar

[Satt2015]

Then you've come to the right place! Sorry for the need to welcome you but you will find everything you need to know on here! You'll make friends for life too! Shout and scream and ask anything you want! Someone will have an answer. Whereabouts are you? How old is your dad? Does he live alone? What stage is he at?

Hugs x

[5-4-3-2-1]

It is astonishing, now that I have joined a couple of PSP groups, how many people are affected by this disease and how little is known about it!!!

[easterncedar in reply to 5-4-3-2-1]

So much has been learned these past five years. I'm heartened by the research that is underway. Check out Christine47's posts. She has kept us up to date!

[Sonse]

Thank you for the warm welcome. I am in a unique situation where I am my father's medical power of attorney (MPOA). He is married and lives in the west of the US, while I am in the Northeast. It's complicated, so I'd appreciate not discussing that part of my story.

My journey with PSP started long before my father was diagnosed with PSP. It started when he was diagnosed with Parkinson's after experiencing tremors in his hands. The diagnoses started to grow until he had a very bad fall which lead to his accurate diagnosis of PSP. Although I was scared of this diagnosis, I was relieved to finally know what he was truly dealing with.

I'm not sure what stage he's at, only that he has difficulty walking, talking, and he's now lost the ability to make many facial expressions. He can still give me a smile. He has a difficult time swallowing and chokes when he drinks water. He does not want to take the water thickener. We only communicate through FT now, as I find it a much better way of understanding what he's trying to convey.

Long before I became my father's MPOA, I arranged for him to get hospice care and also applied for programs for aid. While we wait to see if he's been approved for these programs, I have arranged for private in-home care services, that my siblings and I have pooled our finances to cover the cost. It's expensive and I am still trying to find a solution.

I need all the support I can get. I am relieved that my father no longer eating ice cream as his primary meal and that when I call his face is clean and that he seems to have regained his dignity.

I want my father to live with me, but it is his choice to remain in his home. All I can do now is visit when I can, and support him in any way I can from the northeast.

[Satt2015 in reply to Sonse]

Thank you for telling us more about your Dad

It must be very difficult living a distance away

It sounds though that you've been a great help

keep posting x

[Sonse in reply to Satt2015]

Thank you. My goal (along with my other siblings) is to make him as comfortable as possible..

[easterncedar in reply to Sonse]

I'm in the northeast, too. Just getting up to shovel out. Did you get the snow?

[Sonse in reply to easterncedar]

I'm up too. Lots of snow. Over a foot here. Shoveled our walkway 5xs yesterday.

[Sonse]

Over the weekend, my father phoned via FT, scared that he found blood in his urine. I contacted his hospice nurse who then had urine culture and sensitivity test done. Initially, she had ruled out a UTI and said that it could and was probably just symptomatic of PSP. We accepted what the nurse told us, but continued to call her for the actual results of his test. Because it's through hospice, we were told that the results would take longer than usual (72 hrs). We also informed her that he had grown lethargic and disoriented. He had also developed a fever. Still the same response from his hospice nurse.

On Tuesday, my father was found unresponsive by his caregiver. He came to when the paramedics arrived, with vital signs normal. I asked (via FT) that they take him to the hospital. Later, when talking to his hopsice nurse, she was more concerned that I did not call her first to "triage" him before making the decision to have him taken to the hospital.

Long story short, while in the hospital, he was found to have a UTI and was treated and sent home yesterday. Yesterday morning, I spoke with hospice care and had his nurse switched out to a new nurse. One that I hope will do a better job of listening to his family.

[Kevin_1]

Hi Sonse

Welcome

There are a lot of information resources around not the least is the Cure PSP sites in the States.

Here is a link to some useful pages. It says 'for professionals', but that is the dear old PSP association, they are a little 'old fashioned' and seem to thing 'the public' have a lower reading age (but they are wonderfully effective as an organisation). These are not difficult reading at all and I think they are superb.

It sounds like you are very on the ball - Strength to you.

pspassociation.org.uk/for-p...

Kevin

[easterncedar in reply to Kevin_1]

Thanks, Kevin. I hadn't seen these publications. I'll be looking through them later. First I have a blizzard to dig out from, so the aides can get in and I can get out this morning. Fun in New England!

[Kevin_1 in reply to easterncedar]

You sound more and more like wild mountain people with every post!

Good luck... We're getting it next.

[pzagy in reply to easterncedar]

You guys got slammed this week, I have been watching the news and thinking about you. We seemed to have missed the whole thing in Toronto.

[Sonse in reply to Kevin_1]

Thanks very much!