[Ann Perkins]

I agree with Toni and Kim on their list. As an advocate and support group leader for many years (I am in year 22 of PD), I believe the autonomic nervous system is the one at fault. It’s clear that we have ingrained in our brain, the tendency to do what’s inherently automatic for us…and doubly clear that we must remain mindful (in the moment) to survive the inability of the autonomic system.

As info., a Parkie friend, has a little know symptom called pseudobulbar affect, where she cries and/or laughs (for awhile) without reason. Juat when I thought I knew them all…

[Ann Perkins]

Hello Bari – I too am diagnosed for 21+ years. The main complaints I hear from PWP is that they are afraid of falling out of bed. So…I measured 23″ on the height of my present bed, and I find that the mattresses now are high and big, but I will continue to look. I simply want my feet flat on the floor when I am sitting on the bed.

The 2nd complaint I hear about is repositioning. I have kept a Canadian firm’s info for anyone that, like you and I, like the feel of cotton but need the slide ability as well.
http://www.comfortlinen.com – check them out – you can also get satiny PJ’s from them – which is a must.
My original idea is still working for me. I went to a fabric store and bought a strip of satiny like (polyester of some sort) material with a moleskin like underside. Then I added (a tailor did it for me), regular moleskin type fabric to both ends of this rectangular strip. In the end you’ll have moleskin on both sides of the bed (friction, so you don’t slide off the bed) with the satiny stuff in the mattress top range. Total width depends on bed width. 18″ for the length of the bed. As you might surmise, this allows you and your significant other the feel of cotton, with the added repositioning feature just set at the core area of your body (hips area).

[Ann Perkins]

Virginia Beach, Virginia for the past 50 years…am I a local now?

[Ann Perkins]

The best gift is no gift at all.  I was diag in 2000, and this year, we only gave presents to the small ones.   We had a honey-baked ham (served cold), broccoli slaw and everyone brought a side to share…all Paleo friendly, per my request.  No drama, just a great time together, celebrating the day the way I believe it was intended.  Best Christmas ever, without stress.  PS I believe stress is a big factor in symptom exacerbation, and nutrition is in my top 5 ways to slow progression.

 

[Ann Perkins]

I do not have sleep suggestions, but i do have a writeup on Sinemet causing nausea.

Controlling Nausea and recommendations if Sinemet is the cause.
There are several ways to control or relieve nausea, including:
Drink clear or ice-cold drinks. Drinks containing sugar may calm the stomach better than other liquids.
Avoid orange and grapefruit juices because these are too acidic and may worsen nausea.
Drink beverages slowly.
Drink liquids between meals instead of during them.
Eat light, bland foods (such as saltine crackers or plain bread).
Avoid fried, greasy, or sweet foods.
Eat slowly.
Eat smaller, more frequent meals throughout the day.
Do not mix hot and cold foods.
Eat foods that are cold or at room temperature to avoid getting nauseated from the smell of hot or warm foods.
Rest after eating, keeping your head elevated. Activity may worsen nausea and may lead to vomiting.
Avoid brushing your teeth after eating.
Try to eat when you feel less nauseated.
If these techniques do not seem to ease your queasy stomach, consult your doctor.
ParkinsonPlace.org August 2014
Letter from a PWP following up a support group meeting June 8, 2011

It is referred to as an “orphan” drug in the United States. The manufacture of domperidone has been discontinued in the U.S. since there is little demand for it and consequently is not profitable. Domperidone is a nausea inhibitor which enables me to use Sinemet.

Your neurologist needs to write a prescription indicating that the drug will be used only to “treat severe symptoms of Parkinson’s Disease or gastroparesis. This drug will be used by the patient only under the supervision of the prescribing physician (prescription enclosed) and is for PERSONAL USE ONLY (personal statement enclosed or/and prescription). Patient has tried other locally available therapies with no success.” Hope this helps, Ann P.

[Ann Perkins]

Dr Laurie Mischley, a PD expert and PhD, spoke recently about Melatonin – the type that melts in your mouth (maybe even sublingually). She said to take it if you wake up between 1 and 3 am. It works well for me. There is science behind those words. Apparently the natural melatonin is so low around that time, that it makes sense.
Hope this helps you.

[Ann Perkins]

You’ve got that right!

[Ann Perkins]

I found this by a Parkie friend who bought it – it’s perfect as a grab bar, deterrent to falling out of bed, with pockets to stash my 1st am dose of carb/levo.

got it on Amazon for $109 – It’s the Stander EZ Adjust Bed Rail,Adjustable, and bed Assist Grab Bar for Elderly Adults with organizer. It’s the only one I could find that wasn’t for a child. When I have company or need to change the sheets, the rail folds over and down.

Worked for me!

[Ann Perkins]

Born in Melbourne, but eventually found my way to the USA, and ended up in Virginia Beach. I enjoyed your commentary on exercise for PD. Will be sharing on Zoom tomorrow (Wednesday) with my fellow Parkies here in Virginia.  Thanks and HPN  (Happy New Year)