I finally made it to my 1st physical therapy appointment yesterday; tough to arrange, because I need a ride to/from; thought I'd throw that in; no, I'm not driving.
First, I feel fortunate & blessed again. My therapist, Mike, went to the U of MN for college/training, & actually participated in a small piece of a large PSP study years back. So, 'viola! I have a practitioner who's familiar with PSP & I didn't have to explain to him what it is and how it affects me. It counter-balances the disappointment I felt with my long-term Internist who admitted to not knowing what it was on 4-1 (posted in an earlier blog).
I was surprised by at least one thing I found out yesterday. I know part of it is because PSP causes muscle rigidity & even muscle tone as I understand it, but my muscles aren't as weak as I thought they were. Especially given my Neuro has me on bedrest but for 3-4 hours of mild activity a day. Mike did give me a list of excersises to do at home twice a day at home. One of the excercises included forcing my neck to align right so I can drop my chin/head down into the natural position. By forcing, I mean focusing. Had me do it several times yesterday and when I concentrated on it, I could do it. This will help much with the chronic pain at the base of my skull as well other various soft tissue issues in that area.
Also, my BMI was perfect; as good as it gets. Think that would've surprised me at my age even if I didn't have PSP. It was nice to hear a few positives yesterday
But, my balance is awful...no surprise there. He had me doing the simpliest of simple things; what stood out was my balance was almost non-existent when he asked me to close my eyes, even just standing. And, how my worsening eye-tracking is one of the major roots of my poor balance.
Even with the mild excercises/movements he had me do, muscles in my lower limbs would involuntarily tremor; he said that wasn't weakness, it was the PSP.
Next week, he wants to do a more thorough eye-tracking evaluation. Also scheduled my 1st occupational therapy appointment back to back. My favorite cousin, Bob, who's retired & lives close to me is providing my transportation to these appointments, including my Neuro appointment tomorrow. God Bless him!
Judy
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JudyJ
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Great news that your physio has some experience with PSP and that there were some positives that came from seeing him. Please pass on the thanks of everyone on this site to 'Cousin' Bob for providing your transportation. It has taken a weight off our minds now we don't have to worry about you driving.
Really good to hear that you've got some more good people in your corner ! That's wonderful! Those support systems make all the difference, don't they ?! Take care ! Elise
hi judy it seems like you are setting down at last and good old cousin bob is dropping you off and picking you up that sounds great mate \\ THANKS FOR THAT COUSIN BOB\ ITS NICE TO GET THOUGHT OF \\ YOU WILL BE REWARDED IN HEAVEN \\\THAT'S WHAT THEY USED TO TELL ME \\ BUT THIS IS CLOSE ENOUGH FOR ME RIGHT HERE EVERYTHING IS BEAUTIFUL IT IS AUTUMN NOW BUT YOU WOULD THINK IT WAS SUMMER ITS GORGEOUS \\\ SEE YOU COUSIN BOB AND JUDY TAKE CARE KEEP YOUR EYE OUT FOR EACH OTHER PETER JONES QLD AUSTRALIA PSP SUFFERER
Glad your weather has been so enjoyable. It's odd for me to think of someone living where it's autumn; haven't done much traveling abroad.
MUCH to our angst here in Minnesota, USA, we are under yet another winter storm warning between today and tomorrow; up to 6 inches of snow they say. People are getting pretty cranky, for sure. We've had a lot less spring sunshine days; they've been mostly cloudy and chilly yet.
Your therapist sounds like a great guy and it sounds like the hospital are helping out by arranging appointments back-to-back. At least that means you only have to ask cousin Bob to do one trip!
Bless him!!
Hope the occupational therapy is as helpful as the physical therapy!!
Thank God for cousin Bob. It's great you are getting more help now and such a relief you are not driving. When my husband was first diagnosed he asked if he could continue to drive and the neurologist told him that many people are first diagnosed after having serious car accidents, hurting themselves and often others. Leave it to dear cousin Bob.
Thank you everybody; he's taking me to see my Neuro today & I will pass your comments on to him.
Yes, to those who've been following my posts, the loss of driving has been a life changer & very scary in terms of possibly increasing my isolation, feeling like a burden to others, and just the practical point it is very hard to find somone available during the daytime hours because people are busy living their lives.
It was a coincidence that just days before the driving event during which I almost fainted and triggered this event, he reconnected with me after several years. Again, for no reason but for busy lives. Called and said he wanted to stop over at the end of that week for coffee. I don't believe in coincidences, and what a relief.
He is 61-ish and has been retired from the City of St. Paul for years now. His wife, Mary, still works. Bob and Mary are doubly-sainted; here's why...
13 years ago, their only daughter Gail was married and pregnant with their 4th child. Her husband, who was 37, went out for his evening run & never came home. He collapsed and died of a massive heart attack. It was just the saddest situation.
He and Mary immediately made room for Gail & her 3 elementary age daughters to move in with them. Helped out with caring for her children while Gail cared for herself for the rest of her pregnancy. She finally had a boy, Jack, which her husband was hoping for.
The house next door went up for sale and they helped her buy it; they're still neighbors. Bob and Mary helped get the kids to/from school, but especially Bob because he retired early that long ago.
Gail went on to get her Master's in Nursing and has been employed for many years now. Her 2 oldest daughters are in college, the 3rd is a senior, and Jack turns 13 this summer.
Gail's husband was adopted and she jumped every hurdle presented to her to get her husband's family history, and was successful.
She took all 4 kids down to Mayo Clinic to have them examined for the same heart defect that caused her husband's sudden cardiac arrest. The girls were fine but Jack had the same defect. He successfully underwent open heart surgery to correct the defect 2 years ago.
That family amazed me from the beginning of this tragedy. Simply put, my cousin and his wife just did the right thing right from the start, and it wasn't always easy. I've told him over the years how much I admired them. He always passes off the compliment. My immediate family is very fractured and I know they wouldn't do the same for me. Believe there are other families out there who wouldn't have made this long-term commitment, either.
So he truly is sainted, and particularly right now, I'm very blessed to have him in my life.
Judy, Good for you. Glad you are in physical therapy. My wife Sharyn went through two sets of PT. After the second one Medicare would no longer pay for the sessions. The PT worker said that to continue therapy my wife would have to be showing improvement. Of course with PSP there isn't going to be improvement due to the progressive nature of it. So we were religated to doing our own therapy at home. Another option would be to pay, out of pocket, for the sessions which are not inexpensive. Just thought I'd put that out there for you and others.
Thanks for the advance notice; as I read it, it was instantly familiar. My Mom's sister had a major stroke about a month ago. They abruptly stopped her PT after a few weeks, also stating Medicare rules, & "staff" hadn't seen enough improvement. That's crazy. They suggested if the "family worked with her" inside their facility, & staff should observe some progress, they'd reconsider. How many ways can you say subjective?
Wow that's brilliant news -your therapist should really know how to keep you mobile as long as possible. Hurrah for small miracles!
Oh, the relief and something close to joy I felt when he told me he participated in a large PSP study tho it was sometime ago. No blank look from him when I told him what it was, etc.
And, yes, as for the excercises, they are chair excercises & pretty simple. But one he gave me, and is simple, is specific to dropping my chin from the chin-up/head back position. When he had me do it the 1st few times, I wasn't quite getting it, but he guided me thru it til I felt a disc in my neck readjust to allow my head to fall more forward into a natural position. It didn't hurt at all.
That chin-up-head back position has caused considerable pain for many months now; so that excercise alone gives me hope. I know this is a progressive disease, and going forward, I'll end up in the same place as everyone else, but whatever I can do in the present to extend the quality of my life, I want to do.
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PSP Diagnosis Changed to PD
Why so different with other people?
Unresponsive episodes 
Coconut oil
