I've been off-the-grid for some months now. Holy cow, I was sick.
But I'm happy to report I'm doing MUCH better now. I actually feel stable. What is stable? Anything other than what I left behind.
Think I left off with my struggles with my newly diagnosed severe sleep apnea and trying to adjust to my fancy-dancy $7K C-PAP machine. It was unfun.
I finally became compliant, meaning using it every night for 30 days or more beginning mid-to-late summer. Now I wouldn't think of sleeping without it.
My apnea events (autonomic & central nervous systems oriented) prior to the machine were 120 per hour. For the past 3 months, they are down to 11 an hour. Amazing!!!! I'm really into oxygen these days
I have no idea I had sleep apnea and thought my Doc was sending me on a wild goose chase in May when he referred me for a sleep study. Little did I know. Nor how long I've had it. My Doc does believe it's related to or a complication of PSP.
What I do know is I've been a chronic fainter since age 3. The last 2 or 3 years, it became out of control and everyday I would have one or more fainting events. Since I've been compliant with using my C-PAP machine, I've not had a single fainting event or even a twinge of one.
This alone is a miracle. I believe I'm living a miracle. Over the past few months, I have actual energy tho I have nothing to compare it to. The PSP still makes me drag, but on a base level, I'm much better.
The summer was very rough. Fell numerous times, including a new type of fall in which my legs just collapse beneath me, as if I had no feeling from waist down. Those types of falls were actually worse than the usual falling backwards falls. With the backward falls, I would have at least a few seconds warning due to an odd sensation. The dropping-on-my-bum falls happened very spontaneously. No injuries tho. Like I said, I believe I'm living a miracle.
I also experience more disorientation than usual and my chronic pain was intense. I especially experienced cognitive difficulties very specific to anything involving time. Difficult to explain but if anyone else has experienced this, let me know.
We moved into our current, one-level residence October of 2012. As I posted before, my former residence was under repair/restoration prior to putting it on the market. It finally sold and the closing was early August.
However, this wonderful event came with some significant stress and set me in tail-spin for the rest of August into early September. I was really scared. My tremors were 24/7 and head-to-toe. I ached all over. Even 'at rest', I tremored. My neck had become so painful because of a pinched nerve high in the cervical column due to my PSP head-tilted backward position. But it became unbearable during that time. An MRI revealed I also have arthritis in the rest of my C-spine. I can no longer turn my head; I have to turn my body instead. I've accepted this.
In the present, my tremors which by itself can be quite debilitating, are generally manageable. Occasionally I will have a few days of bad tremors, but now I recognize that stress is a big trigger. Oh, the mind/body connection is an absolute to me.
I have been able to be mobile without the use a walker or cane of the past few months! Isn't it amazing? I'm living a miracle.
Just had a brain scan. There was no change which is good. They found enough wrong on the first one, a year ago I'm having my second neuro-psych in early December. That should be interesting.
I would like to believe that what was/is 'wrong' with me was an undiagnosed case of severe sleep apnea. I swear, the longer I use the machine, the better I feel. But it just doesn't explain my other PSP symptoms. I do believe, tho, if my apnea hadn't been diagnosed when it was I'd be a goner, or close to it. Not only was my brain being deprived of oxygen, so were my other organs. I love oxygen
My girls...must update you. My oldest, Katy, age 22, finally got into a job program in our current county in October (took long enough!!) and is thriving! My youngest, Melissa, age 21, is in her second year of college and living on campus. Her major is psychology. My crazy family inspired her
On 12-23, Melissa is having her 5th, yes 5th, poor thing, major hip surgery. She was born with my mal-aligned hips/knees. However, great news follows. At the end of January, she's going to Scotland to study for the semester! Yea for her! Her paternal grandmother was 100 percent Scottish. Born there, immigrated to Canada, then the states. I'm so grateful she can have this experience.
Life is good. I'm living miracles.
My love to all.
Judy
New here. Husband diagnosed first with PD now PSP
Mum diagnosed with PSP yesterday
Stages of psp
