Parkinson's: It is Weird

 Snarky Parky & me

A Journey Into Parkinson's with Nancy Mellon

Blog Coordinated by Corrine Bayraktaroglu

Updates

So what will I talk about this time Steven? She said.

How about updates on all that has been going on? He said. Or you could take a shower.

I guess I'll write about updates, but I won't call it that.

…........

He said, I'm taking a nap.

She said. I'm tired, I think, I'll I take a nap.

He said, Lets go.

So now it's Monday.

First Update:

All Binders are not created equal.

Because you must wash it at some point, we bought a second binder. We found one at our regular pharmacy. Who'da known?

But when we got it home and I tried it on, it was stiff, and too large. (the box said small to medium) and it Velcro closed only on a couple of panels not anyplace on the whole length. So it is either too tight or too loose.

Do not get the Curad Abdominal Binder Support. 3 panel design.

get the Good Neighbor Pharmacy Universal Abdominal Binder it is not stiff .and while a smidge too tall for my abdominal, I can wear it (it says on the box, that one size fits most. Up to 60 inches.) and it Velcro closes easily anywhere along it's length.

Update:

Have I asked for the referral to the Autonomic Neurology Clinic?

No.

But I am thinking about it every night.

I am often getting, very high BP readings from mid afternoon through night. I have 7 stents in my veins and I had a mild heart attack in 2021, I am getting spooked by this.

Update:

Rasagiline- how's it going?

Rasagiline has been good for me-sort of.. my “off” times are fewer and I am sleeping more. My whole pattern of sleeping has changed again.

• I am staying up late and getting up later too.

• When I finally do go to bed, I can get to sleep within an hour most of the time. But it is almost always after midnight. (I have to stay up to take my last pills, anywhere from midnight to 1:30 am.

• I confess, I also go into the creative art making zone

• or the reading zone and do not look at my watch until it is 2am or so.)

• I wake up 2-3 hours after I get to sleep and

• then after the just-in-case bathroom stop, I can go back to sleep until 8 or so.

• A middle of the night, wake up is not hard, my meds have kicked in and I can move pretty easily!

• By the time I have been waking up in the morning, I am 1 - 3 hours, past when my meds were due. It is a very hard time to move around. I am very stiff and usually in pain when I do move.

  So why the sort of?

• Because we noticed in the Rasagiline pages of side effects that it could cause fluctuations in BP.

Update:

On the splendor of my mornings- No foolin'

Breakfast in Bed.

In the last 2 weeks, Steven has spent most of his days taking and recording my BP and taking care of me. He wants me to sleep in as long as I can, On the mornings when I have overslept my medicine by a couple of hours, and can hardly move, he helps me get up from bed and get to and from the bathroom without falling, and often even hands me my medicine, and my water. He takes my first supine BP reading for the morning. (We are checking for high BP. )Then he fills in the chart for it.

He goes downstairs and brings me up a container full of ice water and a glass of water with electrolytes. Drinking two cups of ice water quickly and adding some salt or electrolytes to another drink, are other ways to help keep your blood pressure out of the tank zone.

The 3 actions that together can cause your BP to tank in the mornings are:

a nights sleep,

taking your Levodopa meds

and eating a meal,

After I hoist myself back into bed, Steven has taken to asking me “what do I want for breakfast?” I can eat in an hour. I look at him and think about all he has done already and say “Steven, you don't have to make my breakfast. I can make it when I come downstairs.”

But, I love breakfast in bed. I always have. And he knows it. I get to answer my email and text my friends while I wait for my meds to click in.

(I have discovered that Steven cooks the perfect egg.)

After I eat, we take my BP again (This time I stand up. It is to check for low blood pressure)

Update:

Hoka Shoes

I got a pair! From “Runners Plus.”

They feel good to wear, I don't know if they are going to

improve my balance yet.

I'll let you know.

Update:

Vision

I went to visit my eye doctor again. I still couldn't read very easily, unless I closed one eye, and that didn't work for long.

As my eyes got tired, every sentence got weird. (Steven feels frustrated when I say something feels weird. He says it wont give the doctor enough information to figure out what is happening to me. He's right, but it still feels ...weird. I often don't have the words to describe what I am feeling.

At the eye doctor's office this time, we decided, that I really needed to have 3 pairs of glasses, one for my computer, one for close up and one for distance. (I didn't know how to handle juggling the 2 pairs of glasses, I already had, much less 3!! Any advice out there?) All 3 of them will have prisms and some will be a stronger prescription.

I was very excited to get them. The new distance one seems to be doing better but the close up pair still has the doubling problem and feels WEIRD.

So it will be back to the Eye Doctor.

Parkinson's is WEIRD - Persistence Needed.

Take good care of yourself,

Nancy and the Snark