Best products from r/Parkinsons

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494127/

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Feedback from Dr. Okun (UF - Neurology) was that carbidopa isn't responsible for dyskinesia, but dyskinesia is more of a progression of the disease.

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From J. Eric Ahlskog PhD MD was there was a 50% chance of developing dyskinesia for YOPD (staring Levodopa/Carbidopa) at age 40; but over none for over age 70.

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For me, zero desire to vape as I need every cell in my lungs to function.

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sources:

Michael S. Okun, MD, is currently Administrative Director and Co-director of the Center for Movement Disorders and Neurorestoration which is part of the Center for Translational Research in Neurodegenerative Diseases, the McKnight Brain Institute, and the University of Florida College of Medicine.

Dr Ahlskog's book (highly recommended)

https://www.amazon.com/New-Parkinsons-Disease-Treatment-Book/dp/0190231866

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Research:

Someone asked me about my research. I try to give sources and references. Some days I am sharp and fast with my recall of details. I do best early mornings. Awake, coffee, and ready to go. By the evening I have a much harder time (no longer go out to dinner, not social engagements).

So there is progression, but for me my writing and thoughts are still hopefully clear. I'm doing the swim, bike, run thing in addition to my boxing. Not sure how long my body can keep that up but this weekends Triathalon was a bunch of folks in their 70's out there having fun (and much faster than I was!).

Exercise is key, what ever you can do just do it. The more I run the easier it is, and I seem to mentally process that next foot placement better. Haven't rolled an ankle in the past year, which is amazing.

Great minds think alike, Parkie. I ordered those things for one of the PWP in our support group.

We didn't try the seat belt helper you linked, but now that I see it I think that could be a big help to him.

The standing assist was a hit--it helps a lot getting out of the car. It's also called a car cane.

The swivel seat didn't work for him because he was too tall--it's about 1.5 inches high and he didn't have enough headroom. Swivel seats come in differing heights, so check that out if anyone here is interested in trying one.

Something else you might want to check out is a rigid seat belt extender. The one I linked is for Jeep Cherokees, so do a search for your own car model. This extends the seat belt connector 8 inches up in the air, so now the PWP can connect his own seat belt. Before this, his wife would have to crawl over him to do up the seatbelt.

I'm wondering if anyone has rigged their car up with a seat like this? The whole seat swivels, the lowers down to the ground so the PWP just has to sit down like a regular chair.

> I forget words, and am having difficulty expressing ideas fully.

I'm currently dealing with my father who has PD and is much older than you. From dealing with him and trying to help, I can say that this kind of thing is quite typical of PD. It's just a consequence of the disease; of not having a sufficient level of neurotransmitters. It does seem that some decline is inevitable just due to having the disease, and without the neurotransmitters the brain won't be working quite the same, but in some way it seems that the cognitive decline is something that can be protected against or prevented.

My father in particular seems to have been somewhat defeated by the disease, having become less and less willing to do things, both physical and mental, over the years due to their increasing difficulty. This has, unfortunately, only lead to making these takes even more difficult for him as he is not accustomed to them. Even stuff I would consider to be trivial, such as working on a crossword, or adequately preparing or cooking dinner, throwing a frisbee, or gauge what's appropriate in a social context. Part of it is definitely due to the disease, but part of it is because he gave up doing those things and when he tries them again he doesn't know.

> ....maybe its a use it or lose it thing?

This is kind of what I'm getting at - while PD may make it difficult for some things, as long as your medication and care is sufficient you should be able to appropriate tackle challenging tasks and keep that edge. What really got me into this line of thinking was actually from this AMA by neuroscientist Dr. Michael Merzenich. He talks about neuroplasticity and the changing of the brain and the gist of it is that he claims that we can prevent cognitive decline and even turn it into cognitive growth, even in cases of "adult-acquired maladies" (as he puts it). I bought his book, Soft-Wired not long ago. I have yet to read it, as I've given it to my father in order to help convince him that there is a good reason for him to keep being active and he is currently reading and digesting it.

Don't lose hope. You might lose some of that edge due to the disease but there is plenty you can do to keep you sharp. Others can do better than my father and I hope that some of this might help, or at least point in the right direction.

As a pwp I can't help you with caregiving support but can appreciate the relief it might provide for him for you to hold his arms/head down. Perhaps something like the below might be an alternative:


https://www.amazon.com/RIMSports-Harness-Support-Exerciser-Lifting/dp/B07B8JTYVW/ref=sr_1_1_sspa?keywords=head+weights&qid=1564606091&s=gateway&sr=8-1-spons&psc=1


https://www.amazon.com/Sportneer-Weights-Adjustable-Fitness-Walking/dp/B07F25L7QK/ref=sr_1_16?keywords=wrist+weights&qid=1564606138&s=gateway&sr=8-16

Read the book “brain storms”. It has a ton of very interesting info on PD and whether it’s genetic or environmental (or both). It’s the best resource we’ve found on PD so far. And it’s written by a documentary maker so it’s actually engaging and kind of a page turner. Brain Storms: My Fight Against Parkinson's and the Race to Unlock the Secrets of One of the Brain's Most Mysterious Diseases https://www.amazon.ca/dp/1443430560/ref=cm_sw_r_cp_api_i_b-8GDbMF78JEN

hmm I'm not sure if this is the best suggestion (as my Dad doesn't experience the heavy tremor but he has the lack of motor skills) but others may be interested I got him Electronic Salt and Pepper Mills makes that task a lot easier for him

Each person has a different response to drugs containing L-dopa. This means:

1. The amount of time it takes for the drug to take effect
   
   
2. How long it lasts before beginning to wear off Monitoring of these intervals is essential for your doctor to be able to more precisely advise when to take each new dose so that you can smooth out the ‘on-off’ time.
   
   https://www.amazon.co.uk/Parkinsons-Disease-Optimise-Periods-Therapy/dp/199995629X
   
   Are you aware of a very helpful new book called PARKINSON’S DISEASE How to Optimise ON-OFF Periods during L-dopa Therapy containing simple monitoring schemes to fill in and take to your doctor? This helps your doctor to be able to give individualised recommendations for time of taking your Levodopa-carbidopa and possibly tweak dosages to reduce dyskinesia if that is a problem.

We use this one:

https://smile.amazon.com/dp/B0189GHEDW/ref=cm_sw_em_r_mt_dp_U_DGM4Cb8R09YKS

My spouse sets them up every week.

I "can" but putting tiny pills in small compartments, when you have Parkinson's, can be an a all day affair. Though you DO get exercise bending over to pick them up, off the floor... over and over and over again.

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-D

my pd friend loves his fire tablet with alexa. Lets him access music news tv by voice

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Fire 7 Tablet

https://www.amazon.com/Fire-Tablet-7/dp/B07HZQBBKL/ref=sr_1_1?crid=3KD1RGECGL58&keywords=fire+7&qid=1571743859&sprefix=fire%2Caps%2C305&sr=8-1

alexa dot

https://www.amazon.com/Echo-Dot/dp/B07FZ8S74R/ref=sr_1_5?crid=3MRPX2TVTQEDO&keywords=dot&qid=1571743795&sprefix=dot%2Caps%2C331&sr=8-5

Here is the mobile version of your link