I don't! My body feels it but my spirit remains youthful.
It's been THE year of years. Precisely at this time last year, I was beginning the process of my neuro-psyche test following a summer of neurological testing. It was early August I received my PSP diagnosis. Tho I knew something was quite wrong with me, I found the diagnosis both a big relief (I wasn't crazy) as well as mind-shattering.
I was also sued my former husband that summer over the house my girls and I lived in for 12 years long-story). Bottom line, it hiked my stress level into high gear, but with some legal help and angst-filled weeks, I prevailed. But it still left the big question where the girls and I would be living in just a few short months. I know, it sounds like I lost but I won. It was that confusing of a mess. The worst of it, tho, was unnecessary drama. I do not do drama these days for my own good. I shun it. Truly.
Via a series of miracle - they happen; firm believer - I was able to get into a one level home in our "old town" last October. And, I was able to finance the repairs needed on the old home....which took several more months to sell than predicted because of all the work that needed to be done on it to make it marketable.
I essentially had my own 'habitat for humanity' working over there. A mix of friends. It was not without drama, which I shun these days...drama will find us if we are alive, so why seek it? And unnecessary drama is the worst thing for me with PSP, I've discovered.. It finally went on the market in mid-June and got a full-price offer within a handful of days which was immediately withdrawn after an overreaction to a radon reading. We've since had a radon ventilation system installed and am pleased to report it just sold again! FINALLY, I can begin to close that chapter.
It's been THE year of years of transition. A year ago at this time I was quite sick and scared, not knowing what was wrong with me, as well as how/where I'd be living, and if he'd one the court case, that could've put me on the streets, or flopping from one person's couch to another's. Without further explanation, it was that dire.
My oldest daughter, Katy, age 22, had previously lived in her own apartment for 2-1/2 years and loved it before we moved to this spacious rambler during Oct. My youngest, Melissa, still lived with me. So....it was quite a transition having the 2 of them living under the same roof again after all that time. I had my 'parent hat' firmly planted on my head...actually bolted down") for first weeks, anticipating adjustment challenges, and they sure appeared. Wow, it was rough for a bit but thankfully settled down. These days they are great gal pals...most of the time.
As for me. Wow. My one year experience knowing I have PSP has been a doozy. Can't even call it a roller-coaster. Everything in my post above was a roller-coaster but not PSP. It was more like a downer. Like a constant fear. Like a "How am I to endure all of this?" As well as very troubled worries about its implications on my daughters.
And frankly, until just recently, I felt like crap. Straight-forward, crap. I seemed my symptoms would be cyclical, meaning I'd go thru periods in which my symptom of falling was the biggest concern. Then I'd go thru a period where my temors, often whole-bodied, would be the problem not to mention, exhausting. I know tremors are more A-typical with PSP, but I've got them. Then it switch up to swallowing/aspirating for a while. I have other symptoms too including poor vision but when 2 or more were acting up at the same time it was pretty miserable; essentially bed-bound.
A year ago at this time, my cogniiton was quite poor. My speech was hard to understand for a variety of reasons. Memory, forget it, pun intended. Confusion? Oh, yes. My MRI, EEG, and PETscan did all show changes to substantiate this. Thankfully, however, my Doc carefully got me on a couple of meds to help with that, and there's been much improvement over the year, and particularly when compared to a year ago.
Also with him adjusting things here and there, my high level of pain has finally come under good control. That by itself, is a miracle.
Lastly, my sleep apnea. WOW! It is a real problem. In case you missed it in previous posts, my Doc did say it's directly connected to PSP, or a complication, if you will. I stopped breathing during the sleep study every 30 seconds during the night. And the great majority is due to first, my autonomic nervous system, next my central nervous system, and then very little obstructive sleep apnea.
Late winter/spring into June when I finally got my CPAP machine, I was literally not out of my bed but for brief times. I wasn't diagnosed til late May. But as it escalated, I'd wake up in the morning panting, sweating, and feeling like I was going to vomit. NOT normal. Was scared to death I was on the edge of having a heart attack or stroke.
The CPAP machine HAS helped. The first morning after I used it, even colors were more vivid. It was like looking at my surroundings and life in a whole new manner. I thought, 'wow, a week of this and I'll feel like a whole new person'. However, it was short-lived. The next several nights I had trouble with the mask leaking, so on and so forth which would then keep me awake trying to plug them. Grrrr. So it's a love/hate thing right now. But I've experienced the promise of it. Maybe 1 out of 4-5 nights is a good night with Iris; I named her since we're spending so much time together. Obviously, there are kinks to work out and adjustments to be made. I have 2 appointments about this at the end of the month, so I've decided to let it roll and be patient.
This has also been a year of deep reflection for me, encompassing decades of 'stuff' and getting my priorities straight on a practical and a spiritual level. This is good.
Mid-way thru this year I started to realize I was allowing PSP to define me. No more of that. I happen to be a well-rounded, interesting human being, who happens to have PSP.
Mid-way thru, a long the same lines, I started to realize that I was allowing PSP to control me, rather than me trying to control it. No more of that. I will do whatever is in my power to get in front of it, even if there are setbacks. I will not let it control my attitude or outlook on life.
Everday I wake up is a good day. I've learned so much this past year on so many levels. As I said, it was a period of deep reflection, transitions, adjustments, acceptance, and certainly a learning experience.
But I want this year to be the year APPLYING everything I've learned. I want to be a DOER again. Doing is a verb. And I don't have to let PSP stand in my way.
Thanks and blessings to all of you who have patiently read my blogs and responded to them informatively, compassionately, with empathy, and much love.
Fondly,
Judy
When/how do you tell someone that PSP is terminal?
Skye 07
My first birthday without dad
PSP 
