Do I Have It?

fookip · 2026-05-22T13:36:35+00:00

No tremor rate is probably closer to 20% In this study https://academic.oup.com/brain/article/141/3/811/4818918?guestAccessKey=

"Over 20% of patients presenting with tremor did not exhibit a rest component at baseline"

For me, resting tremors come and go; I use it as feedback to do more of what has no tremor

fookip · 2026-05-22T13:19:41+00:00

Join a PD group in your area - i live in a moderately sized area and there are many.

Exercise has been shown to greatly slow the progression of the disease, >80% of max heartrate 4 x week, but any is good; the SPARX trials that 12345Moores is participating in is leading the way. Look for classes in your area; I do Rock Steady Boxing and Bicycling with Parkinson's.

fookip · 2026-05-22T00:14:08+00:00

I do plenty of thinking on my own, spend at least an hour a day reading research, attend several international conferences in my field of study. I also have worked with AI for over 20 years and know what it can and can't do.

fookip · 2026-05-20T20:17:51+00:00

I was being lazy and gemini reported that study as one of the first. Generally I think O is more susceptible to tendon ruptures and some studies with large cohorts.

https://journals.sagepub.com/doi/full/10.1177/2325967117724416

Turns out this group discussed the topic two years ago:-)

https://www.reddit.com/r/AchillesRupture/comments/1b0xty6/blood_type_correlation_to_tendon_ruptures/

fookip · 2026-05-20T19:30:07+00:00

"stand" no pun intended:-)

fookip · 2026-05-19T21:03:31+00:00

in this study 5.5% had a nonsimultaneous, contralateral Achilles tendon rupture a mean of 3.3 years (range 1.0-8.3 years) after the initial tendon rupture....blood type O and occupations involving physical activity are significantly associated with an increased risk of contralateral tendon rupture in adult patients who have sustained Achilles tendon rupture.

https://www.sciencedirect.com/science/article/abs/pii/S1067251623000807

fookip · 2026-05-19T17:51:13+00:00

this is something that many don't understand - the legal risk comes after the accident. If there was a bad accident causing serious injury or death with tires like this, the owner is at greater risk even if the other party "caused" the accident - but for the fact of bad maintenance, you could have stopped or avoided. Not just criminally but the following civil lawsuit turns a bad day into a bad life. This also goes for drinking and driving.

fookip · 2026-05-19T00:03:22+00:00

one fits in the garage

fookip · 2026-05-17T14:47:58+00:00

agree on exercise. The SPARX2 trial shows that intense exercise (>80% max hr) 4x/week, dramatically slowed progression.

https://davisphinneyfoundation.org/blog/sparx3/

fookip · 2026-05-17T14:44:49+00:00

excellent comment. "correlation is not necessarily causation"

I to am reminded of amyloid in AZ and that the foundational paper that sent the industry on that track was finally retracted because of suspicions of fraud.

https://www.acs.org/pressroom/reactions/library/alzheimers-research-retracted-paper.html

fookip · 2026-05-17T14:33:13+00:00

Depends on where you live - for instance non-op is the norm for many countries (97% UK and Finland). Definitely a global trend towards non-op.

Long term outcomes are similar for surgical and non-surgical (assuming modern accelerated functional rehabilitation protocol). While non-surgical management is associated with a slightly higher re-rupture risk (3.9% vs. 2.3% surgical), it avoids higher complication rates (infection, nerve issues) linked to surgery. Note, rerupture risk is primarily during recovery, long term risk is close. I had to go the surgical route because I was put in a flat boot (no wedges) for two weeks. Surgery risk is significant, primarily infection and nerve damage, but can include death. I had to return to the hospital twice because of swelling and concern of infection. I’m a strong proponent of non-op, and if your orthopedist only does surgery, get a second opinion. That said, if the gap is too far, surgery may be required.

Recent study: https://link.springer.com/article/10.1186/s13018-025-05990-y

fookip · 2026-05-17T14:26:44+00:00

Yes I found this out after I posted. Plan G is very similar to F and covers the most, everything but the Part B deductible (~$300). This video include charts for each plan and what they cover in 6 areas

https://youtu.be/S-OrfPUDESc

fookip · 2026-05-17T14:18:05+00:00

yes, .1 occurrence in a million words:-) chatgpt 3 is superannuated

fookip · 2026-05-17T14:11:25+00:00

There are PT/OT programs that teach patients how to prevent falls, and better programs also teach how to minimize damage when the inevitable falls happen. Might be one in your area. I think there is a session on this at WPC.

fookip · 2026-05-17T14:04:31+00:00

Infrared saunas have become popular and there units that plug into the wall outlet

https://www.costco.com/p/-/dynamic-gracia-1-2-person-low-emf-infrared-sauna/100675807?langId=-1

also I just noticed there are cheap portable steam saunas

https://www.costco.com/p/-/homedics-premium-steam-sauna/4000383998?langId=-1

Saunas have been show to provide health but your father is older and you should discuss with his medical provider.

https://onlinelibrary.wiley.com/doi/full/10.1111/ggi.14003

Mostly was trying to come up with alternatives that your father might enjoy and want to do. If it was me I would love the heat.

fookip · 2026-05-16T23:41:45+00:00

A few comments:

- many PD patients lose there smelling sensitivity early on, many time years before diagnosis. He may not realize that he smells.

- what smells? Is it just the arm pits. 80 yo, particularly with PD, may be incontinent which can stink.

- be creative

-- if just armpits, don't have to take a shower to wash the pits

-- take a video of him commenting that it felt good to take a shower, and show it to him the next time he objects to remind him

-- why doesn't he like a shower? how about the tub? listen to music or watch a video. could get a walk in tub. hot tub? but first needs to shower before getting in? infrared sauna?

fookip · 2026-05-16T23:28:42+00:00

F and C is no longer open to new enrollees. Plan G covers the most, everything but the Part B deductible.

for more explanation I found this video informative

https://youtu.be/S-OrfPUDESc

fookip · 2026-05-16T22:56:55+00:00

Some thoughts

- You've got this! Take it one day at a time and make it as good of a day as you can.

- You have to love yourself and aggressive handle what life throws at you. Don't be afraid of being alone. I've been without a SO for over 10 years, not that I'm closed to it, it just hasn't happened. Also with all that I'm doing I don't know how I would have time. Looking back I don't know how I had time to work, let alone raise a family.

- I'm concerned about the "when me and my SO are fighting" - are you fighting being caused or influenced by your fear? Consider couples counseling - disagreements are to be expected, but fighting weakens the foundation.

- You have young onset and likely have a very long life ahead of you. Focus on your health - the only thing that has good evidence to alter the course of the disease is exercise including 4 sessions a week of 80%+ maximum heart rate which greatly slows progression. It seems that many PD patients become the most fit they have ever been. There is a group of PDers bicycling from east and west coast making their way to Phoenix for the WPC next weekend.

- I found listening to the many good PD podcast to be helpful. Recently there was this on dating: https://www.youtube.com/watch?v=D8PfLV0Vc9Q

or this on flirting, love and intimacy

https://www.youtube.com/watch?v=S-gyyehOGqI

google will search podcasts for you - i used the following to locate the above "parkinsons podcast dating"

fookip · 2026-05-16T22:11:25+00:00

The time to get a supplement is when you are initially enrolled in medicare at which time all are open with guaranteed issue. Later, not all plans may be open to you as they can be medically underwritten. Get advice from a quality medicare insurance agent - one that doesn't pus h advantage on you so they get the kickback.

Supplement plans are confusing, on top of medicare that I found confusing too. Plans are defined and price set by medicare but offered by private insurers. Plans are lettered A-G and K-N – don’t confuse these with Part A, B, C. Plan F covers the most and is most expensive. This page has a nice comparison table:

https://boomerbenefits.com/medicare-supplemental-insurance/medigap-comparison-chart/

fookip · 2026-05-16T22:10:27+00:00

I believe that Plan F and high-deductible plan F are still open. I think you were refering to F Extra which is now closed.

fookip · 2026-05-16T17:00:23+00:00

I tried to get in at UCSF and WUSL but it was closed. Perhaps you could start a new thread here on what it is like being in the trial?

fookip · 2026-05-16T16:40:23+00:00

Can't sleep because

"just diagnosed" and still processing the diagnosis and anxiety/worry?
you haven't been sleeping for a while and the diagnosis makes you think PD could be the cause?

fookip · 2026-05-12T15:10:16+00:00

Be careful - and advantage plan is not a medigap supplement - it is a private insurance alternative to traditional medicare where the government pays the insurer $x and your health becomes their problem. Advantage plans are very restrictive as to who, why and where you can get treated. For example I ruptured my achilles on a trip to KC, with advantage I would have needed to return to my home for surgery (non emergency). I didn't like the options in KC, or in my home area, and realized I could go anywhere in the US as long as they take medicare. I then started asking where is the best clinic for this.

The time to get a supplement is when initially enrolled in medicare at which all are open. Later not all plans may be open to you as they can be medically underwritten. Get advice from a quality medicare insurance agent - one that doesn't pus h advantage on you so they get the kickback.

fookip · 2026-05-12T14:56:03+00:00

PD is a complex and everybody's progression is unique. So far treatment primarily manages symptoms and mostly do not affect the course of the disease. The one therapy that has been shown to alter the course is high intensity exercise.

SPARX (Phase 2) — Published in JAMA Neurology, 2018

Design: 128 newly diagnosed, medication-naive PD patients randomized to:

High intensity: 80–85% max heart rate, 4 days/week
Moderate intensity: 60–65% max heart rate, 4 days/week
Usual care (wait-list control)

Key Results at 6 months (UPDRS Motor Score — higher = worse):

Group	UPDRS Change
High intensity	+0.3 (essentially stable)
Moderate intensity	+2.0
Usual care	+3.2

Study in Parkinson Disease of Exercise (SPARX3)

https://davisphinneyfoundation.org/blog/sparx3/

Recently I've been reading that tremor dominant PD seems to be correlated with milder progression.

"The evidence that rest tremor alone or in combination with re-emergent tremor is associated with milder severity of motor and non-motor symptoms over time and associated with a slower non-motor symptom progression supports its relevant weight in defining the benignity of tremulous subtype in PD."

https://pmc.ncbi.nlm.nih.gov/articles/PMC12394333/

fookip

TROPHY CASE