What are /r/Parkinsons' favorite Products & Services?

From 3.5 billion Reddit comments

Thank you for the update.

I didn't realize acute pneumonia would be such a drastic change! It is good to know that.

I still have a Pulse Oximeter from my flying days, as I'd check my oxygen level when flying above 10,000 feet. They are cheap now ($30) so everyone should have one. Under 90% means issues and time for the ER. I did take it to my pulmonologist to compared to his high-end medical grade item, and it was within 1%. I bought another one but gave bad readings, so it went back to Amazon.

Random one on Amazon (note 3% of buyers said faulty readings, so take it to your Doctor's office to compare with their machine).

https://www.amazon.com/Santamedical-Generation-Fingertip-Saturation-Batteries/dp/B000ORVXPA/

All my best to you at your Mom.

“The New Parkinson’s Disease Treatment Book”

The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications https://www.amazon.com/dp/0190231866/ref=cm_sw_r_cp_api_glt_fabc_JFN38QFSETPHZN06M3BJ

Small keychain pill case (water-tight):

https://www.amazon.com/Portable-Aluminium-Organizer-Container-Waterproof/dp/B095LSTBDK

You should be able to find those.

Another one (too bulky for my slacks, fine in my backpack):

https://www.rei.com/product/204844/matador-waterproof-pill-canister

22 and me Interesting stuff that comes back. Two that came to mind... Cliantro. Some people love it, some think it taste like soap! Asparagus. After you eat it you can tell when someone else has eaten due to the smell of their pee. It is a genetic trait that lets you smell that (and baffles the hell out of my why my ancestors needed that... Maybe the English could detect when the French were close by during Battle? Did the French even eat asparagus... odd things I wonder about).

One thing to realize is you are positive for "Parkinson's Gene" it increase the odds by 2 that you will have Parkinsons. Deep breath. For the population as a whole, over the years it is about 1 in 1000 get Parkinson's. So if 2x as likely it means odds are reduced to 1 in 500. Sadly 1 in 100 die in car accidents. So don't freak out over the results say "2x as likely" as you need the big picture!

Oddly enough I was negative for on groupd of genes. 23 and me realized "We have a bunch of people with Parkinsons, but all are negative for the LRRK2 genetic mutation. They started looking at "people with Parkinsons" and "Genetic variations". Sure enough there is a huge cluster of other genetics involved. It still takes two events (Genetic + Environmental) to trigger Parkinson's. I fell in the later grouping.

>magna click line for their Van Heusen shirts

I spotted these guys which have buttons on them, but use magnetic clicks to hold the "V neck" closed.

It's interesting they have a "no pacemaker" symbol. Uh, wonder if any issue with DBS? (I need to make a note to ask my MDS at my next appt).

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Please remember when shopping Amazon to use SMILE.amazon.com I set up MJFF as the charity.

Michael J. Fox Foundation for Parkinson's Research

Something like this:

https://www.amazon.com/GMS-Automatic-Dispenser-Alarms-Included/dp/B002B51358?th=1

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I do the same as your Dad. 6 AM 10 AM 2 PM 6PM 10 PM (I've cut way back since my DBS) hence breakfast

7 AM, lunch at noon, dinner at 7 PM. Orange or Apple at 4PM. You think I'd remember to take them on time.

Nope.

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I had a pill reminder on my phone.(medisafe, free app but has Walgreens ads on my Samsung S8). It buzzes my Gamin watch. Despite that when I am deep in thought I'll ignore it!

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Sometimes I am a bit shaky, and moving slow, and my wife ask if I forgot. I swear I took my meds, but my body is telling me otherwise. Go to my dispenser, and there are my meds. Damn it!

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Same thing I tell myself, suck it up butter cup (coaches loving phrase to use when we complain about aches and pains, but with lots of love). So you have a life to live. RN, school, working you have more than enough on your plate. Hence the automatic timer to help remind him. We both need that automatic dispensor.

Oh, tell your Dad I love to go running. 3 miles, 45 minutes, three times a week. I was halfway through a run and feeling great. Then my leg started dragging, so I kept thinking "did I remember my medication, I'm sure I did" about a mile from home (all uphill) my trunk starts twisting, hard time holding my head up, foot dragging badly. Even my dog stopped and braced (she does this right before I fall). I took the queue and grabbed the short on her harness and let her take home. I swear she was "you didn't take you medication". Got home, little yellow pill still sitting there. Told my wife "I'm fine". (other than when I had to get stitches, my stock reply is "I'm fine")

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Cool! I'm glad you liked it! I'm the developer so feel free to ask me every question / give feedback. You can download it via my website:

https://sites.google.com/view/baldphone/home

It's not on the google play, (long story). So you'll get a message warning you about potential danger in downloading it. It's not relevant because the code is open source, and no information is taken.

Please notify me if everything worked properly, I hope you'll have a good experience :)

check here. this one was good.

Beware of the ones that have the weight in the cap because caps come off and get lost. Also becomes an uneven weight

We all want it to be true, but way too many times we have discovered the placebo effect on new drugs.

I still love the book "Far Away Cows: A Book About Cows, Engineers and Research into Parkinson's Disease" by Dario Toncich Amazon Link

If anything we have to keep all research going as we still don't know what will work. I remember an article, about 20 years ago?, when it was discovered alpha-synuclein didn't exist in sewage as it was broken down. It was a "oh yech, you mean human waste... ". It was just an odd foot note that a researcher had noticed and was curious about. At the time there wasn't a clue that alpha-synuclein had anything to do with Parkinson's.

So when a vaccine for Parkinson's was announced in research, I wonder who dug up that thesis on the weird fact of human sewage.

Hmm, the thought of DBS doesn't bother me, but fecal implant makes me shudder!

I need to get moving. Muscles locking up today keeping me in a chair, need to sit in the sun for 30 minutes to see if my neck will unlock. Oh fun.

Your friend needs to have a better understanding of her medication, and what it is treating.

I am a firm believer in being seen by a Primary Care Physician (PCP) and if you have a Neurological Condition having it looked at. Be informed, and understand what you are looking to "solve."

I am a firm believer in exercise, eating sensibly, and getting a good nights sleep.

Recently we had one poster who was "hyperthyroid." Thyroid issue, but many symptoms mimicked Parkinson's. It was a good reminder to avoid Dr. Google, and be seen by a PCP.

Recommended Reading for everyone with Parkinson's:

The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications 2nd Edition by J. Eric Ahlskog PhD MD (Author) Amazon smile link

Curious to hear what others have discovered.

One caveat is often I'll read glowing reports, but from the people SELLING it as a supplement.

Looking across NIH articles and spending some time (my OCD kicks in, but I'm at my two-hour time limit) searching article most seemed like "shows promise from 2000 to 2008" Then "no difference from placebo" after that period.

One thing I can not emphasize enough is having a medical team that talks to each other, but the caregiver has to be the advocate for the person with Parkinson's.

As my Parkinson's progress, cognitive abilities have taken a hit. Some medication that helps with cognitive may degrade movement! So you get one doc prescribing medication for Parkinson's and other Prescribing anti-depressants. They aren't working so they ramp up to doses! Oh crud, oh crud, oh crap!

To me, I like the bare minimum of medication. Just enough to make it by (Pain sucks, but any pain medication makes my constipation or stomach issues worse).

Resources for drug research

https://medlineplus.gov/druginformation.html

https://www.webmd.com/drugs/2/index

~~www.doublecheckmd.com~~ seems dead June 2018

Something to remember Parkinson's is long term. Sudden changes are often not Parkinson's but more common like a UTI. Classic is "Grandma was doing fine, but rapidly become delusional over the weekend". That is an infection and needs immediate help (Emergency Room Time).

Exercise: Good any point in the progression. I've seen people go from a wheelchair to back walking after three months. They hadn't progressed as much as they or the family had thought, hence the exercise helped boost their confidence. The guy who returned to walking and driving his car to class looked like million bucks. He was a different person than three months earlier. I keep saying exercise is key to maintaining a positive outlook. Somedays I just hurt and don't have the energy to go, but every time I feel better after class.

I would not worry too much. My Dad got it at 30. My sisters are in their 30s and are fine. I believe the founder of 23 and me did a free DNA test for Parkinson's patients awhile back. Sometimes a genetic mutation shows up for those with Parkinson's disease but not all. I know my Dad did not have the gene pop up in his test. He is also the first one in our family to get the disease. If you want some more peace of mind you could always see if they still do that kind of test. Here is some more information on it. https://www.23andme.com/topics/health-predispositions/parkinsons-disease/

Speaking for my mom here. She was hit in the head with an anchor during a boat haul gone wrong in her 20s. (I still don't understand how this happened but it did and she got last rites.) Diagnosed in her early 50s.

I think if you do the 23 and Me Parkinson's study, this is one of the things they are looking at. https://www.23andme.com/pd/

It is done with artificial intelligence, with a gold standard created by specialists who will agree on a diagnosis. I cannot say more here because it is confidential, but I am open to talk about it with you if you could explain to me more about the diagnostic process. I also made a survey for healthcare professionals If you could fill it in it would really help me https://forms.office.com/Pages/ResponsePage.aspx?id=hoJlrhmOE0KLvmETB3y1Fc_HwIZdZctJtTQwjN_Vs-xUNzlSTUxJUUIySjZLSFBaRFlEV0Y0UTIyNy4u

My dad has PD and has been enjoyed using a Blackberry classic for a couple years now. https://www.amazon.com/BlackBerry-Classic-Factory-Unlocked-SQC100-4/dp/B014VM1CYU

The physical keys are a lot easier for him than using a touchscreen keyboard. It still has Wifi/4G so he can do some basic web browsing when needed. It still has a touchscreen but you can set it to have large font/icons. You can usually find them on Ebay for $50-75, but there are fewer and fewer of them over time.

I'm not sure how to precisely describe his condition. His hands are shaky but not terrible once he's had his meds. Even with meds he sways and has trouble keeping balance. He speaks fine most of the time but sometimes a bit slower.

Personally I use the heavy weighted utensils. Kinsemen KEatlery Utensils. Amazon link

Liftware Steady is good for Parkinson's Tremor. https://store.liftware.com/collections/liftware-steady

Basic $195 Starter kit includes a spoon attachment. Fork is $35 extra.

Tip: Something "sticky" for dinner on the plate helps. Mash potatoes, grits, sticky rice, etc. Often I slide my fork in and out of mash potatoes, so I can eat peas. .

This is going to sound weird because I am not sure how to type this out. But I grab opposite corners on opposite ends of the towel. So I can maximize the length of the towel (or just use a beach towel. But then I drape it over my shoulders like a shawl. Then I just pull back and forth and drag it down my back. I usually have to do it twice to get most of the water gone but it is the easiest way for me to dry my back.

For washing something like this works for me. I just have to use it diagonally across my back if that makes sense.

Aquis - Exfoliating Back Scrubber, Deep Clean & Invigorate Your Skin (4 x 30.75 Inches) https://www.amazon.com/dp/B000I20Q72/ref=cm_sw_r_cp_api_i_HGYLFbWT812E9?_encoding=UTF8&psc=1

I'm self-diagnosed as PD, as of this past February, meeting my neurologist this month. My GP put me on generic carbidopa/levodopa at a low dosage in March. Before that, I tried Mucuna Pruriens extract in pills, expensive and they did nothing, and then in bulk powder form, which did. I got it at Amazon, $23 per pound.

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https://www.amazon.com/Maximum-Strength-Organic-Mucuna-Pruriens/dp/B01BHF3J4K/ref=sr_1_1?keywords=Maximum+Strength+Organic+Mucuna+Pruriens+20%3A1+Super+Extract+Powder%2C1+Pound%2C+Natural+L-Dopa+for+Relaxation%2C+Mood+%26+Brain&qid=1559834783&s=gateway&sr=8-1

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It was weaker than the low dosage carbidopa/ levodopa, but then again I was taking only the recommended dose, 1/8th teaspoon, twice a day. I intend to ask my neurologist about using it as a booster for the "off" hours. I will let you all know. I stopped taking it when I went on the generic carbidopa/levodopa because I did not want to screw up my body's reaction.

No No No. No q-tips into the ear. :)

I kept doing that, packing wax in and getting swimmer's ear. There was so much wax the ear drops couldn't reach the infection.

Felt like a little kid, finally went to my Primary Care Physician, and fessed up to using q-tips in the ear canal. She was nice and cleaned out my ears just commenting "you have more wax than anyone I know!".

This is the thingy recommended by mudfud:

https://www.amazon.com/gp/product/B084ZK235X

It sounds like you have all your basis covered.

The pulse oximeters are $30 on Amazon. About 1 in 10 has bad readings, so check it against yourself and your wife (healthy nonsmoker should be 98-100). I got one and it read 94, I was 99 at my Doc;s so it went back. The next one matched my docs. My wife is a smoker and always reading 90-92 (not good).

Random one (came up at $19.90)

https://www.amazon.com/Oxímetro-Facelake-transporte-cordón-cuello/dp/B0117V8Q2O

Lots of reasons. Probably a great discussion for your Movement Disorder Specialist.

I highly recommend everyone with Parkinson's, or their caregiver, get a copy of Dr. Ahlskog's book. Amazon Link

I'm 60 and active on r/tasker for two reasons: firstly I'm interested in what can be done with a phone for my own and others' PD, and secondly because I fear cognitive decline and programming might hold it off the way physical exercise does.

In a nutshell Tasker lets you program your phone, and you don't need to know conventional programming to use it (although it helps)

EDITS: typos.

Reddit Spam filter blocked the link, so I had to approve it.

https://www.amazon.com/Dressing-PocketDresser-Assistance-Button-Shoelaces/dp/B004UG1TWI

I haven't seen that before.

Sigh, went to make a turkey sandwich. No one was around to slice the turkey, so I opted for pumpkin pie for lunch and saved the turkey for dinner.

What is your exercise routine like?

My Parkinson's Boxing Class is my biggest help, as I enjoy the social aspect, and it keeps me going. Peer pressure helps me when working out. Trying to plank for one minute is tough. With a buddy also planking, we can motivate each other to hold that one minute.

We need resistance bands and weights to build and maintain muscle mass. Standing on a BOSU ball is good; doing that when doing squats while using 10 weights to do bicep curls seems insane, but I can do it. Good workout.

Constipation: Lots of water. For a 180-pound person, that is 90oz of water daily. If you need to, use THICK IT water thickening to help swallow water. https://www.amazon.com/Thick-It-RD26929208-36-OZ/dp/B0011TUM3E

I take magnesium supplements daily. It's a laxative but helps with muscle cramps.

Mediterranean-DASH Intervention for Neurodegenerative Delay diet, which goes by the appropriate acronym, the MIND diet. It centers around eating whole grains, vegetables, and fruits.

I had one of these for years.

I probably bought it forty years ago. Porcelain, I'd dump hot water in it to preheat, but I did a great job of not spelling as I walked back to my office.

https://www.amazon.com/Hotjo-Travel-Mug-oz-White/dp/B00BME1G6A

I hav similar issues and found this helpful. My only wish it held more than 300ml / 8oz.

https://www.amazon.com/KIKIGOAL-Convalescent-Drinking-Disabled-Maternity/dp/B07QB7CP9S?ref_=ast_sto_dp

A Pulse Oximeter is something everyone should have.

https://www.amazon.com/Zacurate-Fingertip-Oximeter-Saturation-Batteries/dp/B07PQ8WTC4

Always compare it to the one in your doctor's office. I got a bad one, sent it back next worked fine.

Have your SO clip it on, take readings while you are sleeping, and record them. You should be above 95%. If you see readings under 90%, bring it up with your PCP or Doctor who prescribed the CPAP.

There are also wearable overnight monitors.
https://www.amazon.com/CMI-Health-Rechargeable-Saturation-Spot-Checks/dp/B07KGHKQHT

My snoring is legendary with my spouse and kids. CPAP has made a difference.

I use a 4x7 pill box similar to this

I use a 4x7 pill box similar to thises-Pillbox-Medication-Dispenser/dp/B08CJZ73SX

Challenge is my 10 AM; Noon; 2 PM pills all go into "noon compartment"

I can handle three doses as I transfer those into my daily carry. Timers on my cell and watch (Samsung phone to Garmin Watch) are reminders to take my medication.

Home by 6:00 PM; light dinner at 7:00 PM works for me.

Similar to Foam Roller for Trigger Point $22

I hate using Amazon, but donated to MJFF went I do. Hence "smile" on URL.

I went through it a few years ago.

Swimmers ear, and too much ear wax build-up. Fluid was getting behind the ear wax, felt like an idiot but my PCP (Primary Care Physician) dug out the ear wax and gave me some ear drops. Two weeks later I was doing fine.

I do not quite understand it, but it was crystals (grain of sand size) causing my problem.

I use these to clean my ears (never use a q-tip)

https://www.amazon.com/Q-Grips-Remover-Flexible-Replacement-Children/dp/B09X1J2NRC/

I have mild cognitive impairment so I'm not sure if this would help your mom or not. I think the product you are looking at might work. I actually use timers on my mobile phone to remind me to take my medication. The problem, though, if I am not able to take the medication for a few minutes after my timer goes off for whatever reason, and I did not hit "snooze", I have hard time remembering if I took the medication or not. My husband found these pill containers with a count-down of the time the bottle was last opened so using the alarm on my phone and these bottles help me keep everything straight. You can find these bottles here.

Would something like this might help? I also saw this one on Amazon based on another suggestion?

Something like this. https://www.amazon.com/Grabber-FitPlus-Premium-Reacher-Warranty/dp/B07T3HTBD9/ref=sr_1_1_sspa?crid=10MQ966K5E0P7&keywords=Grabber+tool&qid=1653997481&sprefix=grabber+tool%2Caps%2C125&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVh...

Basically you want to prevent him from having to reach for something that could cause him to fall over. He just needs to always put it back in the same location so he knows where it is. It won’t pick up real heavy things but I use mine about 2x a week.

An SUV is definitely much easier for my dad to get in/out. But for our sedan, we have this support bar he uses when he struggles to get out (https://www.amazon.com/Stander-HandyBar-Automotive-Standing-Emergency/dp/B000GUKKMW/)

I do not have experience with PD, but thought something like this might be worth considering: https://www.amazon.com/dp/B01MTKFBHY/

The one I got my mother (90+, COPD & general frailty) is no longer made, so I haven't used this brand. Hooks into the bit where the car door latches onto the frame.

Mom swore by it. Gave her enough steady leverage to get in & out. Used it obssessively every ride in the car.

Doesn't solve the car height issue, but might give you some options.

Could be your dose. I’m on C/L and if I’m under medicated, typing is the first thing to go.

A separate suggestion unrelated to pure typing but super helpful if your also having any difficulty with the mouse - I use a Contour Roller Mouse and it really helps with all mouse work. Way easier and it lets you easily switch hands.

Contour Design RollerMouse Red Wired - Wired Ergonomic Mouse for Laptop and Desktop Computer Use - 2.4 GHz Ambidextrous Computer Mouse - Mac & PC Compatible https://www.amazon.com/dp/B00DE83RSC/ref=cm_sw_r_cp_api_i_D46WPK9HH16PNNB9VWJ3?_encoding=UTF8&psc=1

That was my initial reaction too. Although this study I thought was very promising. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7349639/. Was thinking now of maybe ordering this from Amazon if my dad wanted to try some sound wave therapy. The study I thought was pretty convincing but idk if the tech from amazon is what was in the study (doubtful). https://www.amazon.com/Sound-Oasis-Virbroacoustic-Therapy-System/dp/B004MY0NRK

For this, maybe you just need a timer like this: https://www.amazon.com/dp/B086GFTZF9/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B086GFTZF9&pd_rd_w=S39zf&pf_rd_p=0c758152-61cd-452f-97a6-17f070f654b8&pd_rd_wg=7yRDm&pf_rd_r=H4EC0AYPNPQQB8BWZKGF&pd_rd_r=511716b1-59a9-4d9f-9224-c0827...

It can have a set amount of time programmed so that you just hit the stop/start button to restart the timer for the next cycle.

I'm too late for 3 a.m., but assuming you have binaural hearing here's a longshot. Brain entrainment.

I know it sounds whack-a-doodle, and apologize in advance. It's worked for me (neurotypical), YMMV. The basic idea is that slightly different (but synchronized) sounds are piped into each ear through headphones or earbuds. Devices with decent bass response preferred, as some of the sound is subliminal or barely audible, and low-pitched. Doesn't work (well) on an open-air stereo system—each ear's input has to be isolated from the other ear's input.

The slight separation of sounds, along with decreasing tempo, elicits a change in brainwaves, and thereby in thoughts, movements, etc. Basically, your brain becomes entrained, or perhaps "fascinated" and distracted by the sound.

There are many apps available, if you search for "binaural beats." Many seem to want to charge $$ for more than a few teaser recordings. The free one I've used for a long time, Android, is the 20 minute "night sleep" setting on an app called "Shhh":

https://play.google.com/store/apps/details?id=com.shhhlab.app

Or if you don't want to futz with headphones, or this sounds too freaky, there are many slow, meandering musical compositions of many hours length available on YouTube or for purchase; search for Reiki or meditation music.

Recommendation from https://www.reddit.com/user/SunshineDreamer76/

It takes a while to get used to, but switching to a trackball mouse helped me considerably. With a regular mouse, my shaking and jerky movements made it really difficult to get the pointer where I wanted it. With a trackball mouse, you move the pointer with just your thumb while your hand rests on top of the mouse.

I've used a Logitech M570 for years now (have gone through several) and they have not only made it easier for me to work, it has also seriously reduced the wrist and shoulder fatigue I would get from a regular optical mouse after working a long day. Below is a link to the Logitech mouse on Amazon...

https://www.amazon.com/Logitech-M570-Wireless-Trackball-Mouse/dp/B0042BBR2S

the original post was deleted by the bot due to a malformed link

I like the Oral B. One I use is the"basic" model so $45 is a good value.

Shaving I use Kirkland Razors (triple blade) but I shave every two to three days. I've got that Miami Vice stubble look. I need both hands to shave and take a while, hence need just the right moment (about 30 minutes after taking medication, caffeine kicked in).

I've tried different electric razors, but go back to "two hands" shaving.

Sorry for the confusion. In USA the first two rungs are easily found over the counter in the USA. Ibprofen or Tylenol (paracetamol) are common. So that covers rungs one and two. Third or fourth rung can be prescribed for short time (following major surgery), but if you need it more than two weeks then it can not be written by the doctor but you are sent to a Pain Management Clinic.

Friends in Germany were always shocked to see you could buy huge bottle of Ibprofien or Tylenol from the store.

My wife has had major back issues with degenerative disc. She could manage with "rung three" pain killers but finally had cervical fusion (c2-c6) and lumbar fusion (L3-L6). These days she still takes IBprofien to get through the day. She had also gone through a ruptured colon due to diverticulitis, so more pain issues than most people see.

My 70 y/o dad has issues maneuvering in and out of bed, so I got him a set of (faux) silk sheets that allow him to slide in and out easier and he's really liked them for a couple years.

https://www.amazon.com/AMBROXOL-Medicine-Congestion-Reliever-Tablets/dp/B0912QTQ5L/ref=sr_1_1_sspa?crid=VQNBVGL0KHAP&keywords=ambroxol&qid=1642861772&sprefix=ambroxol%2Caps%2C156&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlm...

I use a SteadyGo

Prices have come way down. Sometimes it has a mind of its own, glitchy app, but worked OK. I was walking around the yard filming the dog 'zoomies'

Honesty after using it for a couple of months, haven't used it since. If I can hold my arms on a railing, pressing the phone against the railing it helps. Panning and zooming are still a challenge for me.

Steadymouse.com for Window10 helps with mouse tremors.

My tremors get too intense for action games, so mentally challenging games might be better. Not a gamer, so not sure what to recommend.

So any game is good, look for ones that he can do solo (so he can practice) and two-player (social engagement).

I'd mainly focus on a game that he would find interesting/challenging. Many of the games are subscription, so just know up front what he is getting into. privacy.com is good for creating a virtual credit card for one time use or monthly limit credit card.

We use these https://www.amazon.com/gp/product/B08FCB8ZCB/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&th=1 . They don’t break, and spilling is minimal if they fall. There is the option to drink either by straw or by sipping, and you can seal up whichever part isn’t being used.

1. Issie Gilbert, student
2. Bournemouth University
3. People with parkinson’s and carers
4. Unfortunately nothing, I wish I could but just hoping people will be generous and dedicate some time.
5. Link - https://forms.office.com/r/yc4XqT2QCS
6. My project is focusing on improving the mental health and independents of people with Parkinson’s due to art therapy
7. I haven’t got a link for the final project but you can give contact information to receive updates later in the project

She was in her early 50s when diagnosed--she wasn't swinging her right arm when she walked, which we thought was odd. Took a year to get the diagnosis. Parkinson's causes are wide, varied, and mostly unknown but in her 20s, she did have a traumatic head injury. One interesting way to talk to your dad, especially given your English, is to have him do the 23andme study...https://www.23andme.com/pd/

Hello I am a Oliver Brown a year 11 student at Highfields school Wolverhampton. I recently made a post asking you about a potential product that I could make for this years upcoming GCSE NEA. Last time I received lots of really helpful response that really helped me with my product. My product is targeted at those with Parkinson’s disease however I really need help with a few more things. I have attached a quiz that I need some response for. I can only apologise but I cannot offer any payment/compensation or post responses for privacy reasons as I am a student with no budget and the responses will contain personal information.

Thank you in advance to anyone who answers.

https://forms.office.com/Pages/ResponsePage.aspx?id=rU7OdWAqz0itKaNM8_JvW_-Ra6kmf1RHgFxjEK2ZxFNUQVE1UVM5TFAzMkY5WDg0TDhYWk9QWko4NS4u

This really is terrible. The link above in the reddit title doesn't work. This one should: https://www.speakpipe.com/theparkinsonsproject

I persevered, because I have PD. Guys, it took me a while to get this far, if I sound harsh, it's because you made a nice site with a nice message but what you put on reddit shoots it in the foot.

Austin Parks and Recreation host annual "Senior Games"

We had cycling events at Pace Bend Park. The Loop of the park makes for a nice 10K lengths. So 20K and 40K bike races; then 5K and 10K Time Trials.

I signed up for the 20K road race and the 5K Time Trial.

The road race is a mass start. With 60 cyclists not bad, but many are former CAT 2 and CAT 3 road racers with years of experience. I was on my three-wheel Catrike, towards the back of the pack. I did get hanging with the pack for the first 10K lap but felt like the guy in front of me kick in full turbos as I was getting slower.

Dead last. I had forgotten to take my medication a little early. The race started at 9 AM, and I had been up at 5:30 AM. So by race time my dopamine was depleted.

For the time trial, we start in 30-second increments. As fast as you can, around a "U" turn pylon and back as fast as possible. Oh, I timed my medication just right and was flying on that one. I'm still a little skitterish about downhills after having flipped over earlier this year (arm healing nicely) but was flat out as hard as possible back up the hill.

My motto with Parkinson's "live life to the fullest". I wanted to race around Pace Bend to see how I did on those hills. It is a killer witha 45# recumbent! Still, I was smiling and had fun. Oh, took Gold on my Time Trial (good thing they had class divisions, the fastest rider was at 25 mph!)

Course - 320 ft of elevation over 6 miles. https://ridewithgps.com/trips/20463696

Check her house for trip hazards. Also, put a grab bar in her shower. I have this one and you can’t tell it’s a grab bar. https://smile.amazon.com/dp/B007TAQA8A/ref=cm_sw_em_r_mt_dp_dl_NY9E69N1H3T9G9NPF3N9

We ended up with this one: https://www.amazon.com/Irene-House-Electric-Recliner-Comfortable/dp/B09H5D9MND The leather models especially are kind of expensive but we figured he'd be spending a lot of time in it, so it was worth the difference to get exactly what we were looking for.

The really nice thing about some of the models at this link is that the footrest and back operate independently, so he can read comfortably and still keep his feet up, or he can take a nap with both the back and the footrest at 180 degrees. Not all of the chairs at this link have that feature--in fact, we found it was pretty hard at Amazon, Wayfair, etc to find a remotely affordable recliner where the footrest and back operated independently--and they don't really go out of their way to point that out, so if you like this model, when you choose a color read the description carefully.

I'll second the recommendation for a stiffer, "clicky" style mechanical keyboard. That's helped me a lot in minimizing extraneous keypresses from tremor. And the good thing is that while mechanical keyboards can be expensive, they don't have to be. here is the one I bought and I'm very happy with it.

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I think it's also worth mentioning that you don't have to buy expensive software like Dragon to get speech-to-text. Microsoft Dictate is built into most of the Microsoft 365/Microsoft Office apps like Word, Outlook and OneNote. I'm pretty sure it's even available in the free tier.

Not buttons, but...

FYI the "tactical belt" is pretty handy if you have dexterity problems. Actually pretty neat and handy regardless. When you need to go to the bathroom you just click it open with a pinch, and then snap back together without having to find the right notch or anything. Plus I found it's just the right amount of stretch to not dig in, but not so stretchy that it can sink down your waist.

When moving to another pair of pants, don't unsnap the buckle for that one, just leave the 2 metal buckle halves together. Undo the friction lock and just let the belting pull through.

Also, just throw away the little retainer loop, it will get lost regardless. Instead, thread the belt backwards so the loose end is on the inside instead of the outside. Now it's neater than a regular belt, the loose end can't dog-ear outwards.

https://www.amazon.com/Fairwin-Tactical-Military-Quick-Release-Buckle/dp/B07P5WNYJ4/ref=sr_1_2?dchild=1&keywords=tactical+belt&qid=1631563382&sr=8-2

There are home smell test kits

All you gotta do is 8 scratch-and-sniffs with 4 possible answers each, you do it then look at the key to grade it. No doctor needed.

I got like 5 out of 8, and a lot of guesswork was involved. 5 or below is "consult your doctor". OK way ahead of you, test strip

I couldn't smell much. Then I got a faint, indistinct chemical smell. Pepper...? Diesel? Chocolate? Leather? Smoke?? There's something there but I couldn't recognize it.

I thought maybe the test was crap. Maybe it is, nobody else tried it.

It was upsetting. I can remember these smells, but apparently they're gone and most likely I will never experience them again.

I'm surprised neurologists don't test for sense of smell in an exam for possible PD, it's a common symptom. I think they lack formal approval as a medical test. The concept is fine, but without FDA regulation, anybody could produce tests with poor quality control and/or unproven premise and it would be a waste of time to administer them

Give these a try:

Depends with tabs

Can she stand on her own? Small bench in the bathroom to sit on?

The tabs seem ideal, but I swear three hands and needed to help, peel and stick.

Just reminded me, need to flip around laundry. Early boxing class today, so a few things to get done before heading out.

The Big One® Waterproof Mattress Pad

We also have those "hospital pads" to lay on the bed.

Ostomy supplies (fistula drainage) and never a dull moment at our house.

One book I recommend is Dr. Eric Ahlskogs's "New Parkinson's Treatmentment, 2nd edition". A wonderful reference about medications and current treatment. link.

Fun summer reading is "The Suspect," a novel by Micheal Robotham. Fictional novel.

Micheal J Fox's biographies are good reading. My wife has the harder time, she never picked up the last in the series, but I've enjoyed reading them.

For those caregivers dealing with PDD & LDS: A Caregiver's Guide to Lewy Body Dementia by Whitworth Great insight into Good Days, Bad Days, and Show Days. I was the out-of-town son and would stop in to see Mom, and she was doing fantastic. "Show Days," sharp as a tack, nothing wrong, full of energy. Thankfully I had a long weekend, so after spending all day with her Saturday, we made plans to take her to brunch on Sunday morning. Sunday morning, not ready, no memory of making plans the day before. Please note not everyone with Parkinson's goes on to have Parkison's with Dementia. I've had friends who remained sharp 30 years after diagnosis. I have good days, bad days.

If he has an Android watch or phone, try https://play.google.com/store/apps/details?id=com.medisafe.android.client&hl=en_US&gl=US

I fill out my pill organizer weekly.

Just handy to have only the correct amount/dose to take at the correct time.

Plan ahead where the pills will drop. When tremors are bad, I do the transfer over a cookie sheet (four sides).

A serving tray would also work. Random item 17" x 12" x 2"

Often I press my forearms on the table, or counter, so less tremor at my hands. Feedback to have pressure on my arms, leaving my hands free. It works, but those trays help keep me from dropping meds on the floor.

Is recommend trying https://www.amazon.com/dp/B0006OND0E/ref=cm_sw_r_cp_apa_glt_fabc_FPK8E2XPHR9E92D8H8WR.

Its legal and comes from the aminita mushroom. It producers seratonin which reduces tremors etc. It works very well.

This is the one I bought for myself. It's the iPad Pro 12.9 but they do make them for the other sizes. Best to you and your father.

https://www.amazon.com/gp/product/B087RHMBSY/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Chinese Checkers is fun enough and not too hard.

i play 3 games then rest to avoid headaches

https://www.amazon.com/Chinese-Checkers-Made-in-USA/dp/B002VH00VY

My Podiatrist recommends Asics and Brooks.

I've been using lock laces as I hate tying shoelaces, so having a quick-release helps in keeping them snug and being able to release.

A long shoehorn is a handy item to have. Amazon example

Hiking Poles. The catch is you have to go hiking with him. REI has some great stuff, but I got these on Amazon $45

I really wish I could teleport places to join other people and get them outside and hiking.

Oh "Dad do you want to go hiking" doesn't work. "Dad, Saturday morning I'll pick you up to go hiking" Flexibility is part of dealing with Parkinson's. We need to reduce our stress and be flexible. I worry about those off days when my body just doesn't kick into gear, but 9 time our 10 I am fine and halve a great day, solution "Don't worry about if it an off day, it will be a great day for a drive and we will ride out nature preserve to just watch the birds".

The real gift is time. Spending your time with him.

> John Brissette, "What's Shakin'

Amazon Link don't forget smile.amazon.com and link to your favorite charity. Micheal J Fox Foundation is mine

I bought mine through Facebook for $400. I found some great ones on Amazon as well. I got a hospital bed with guardrails. https://www.amazon.com/Mecor-Adjustable-Assembly-Remote-Control-Head-Incline-Black/dp/B07BVKF9SJ/ref=sr_1_4?s=furniture&ie=UTF8&qid=1544061736&sr=1-4&keywords=remote+control+bed+frames

This is what I use:

https://www.amazon.com/Kinsman-KEatlery-Weighted-Utensils-Teaspoon/dp/B003IGRL3W

It's $42 for the set on Amazon.

I use a knife in my my left hand (German style) so right hand is either fork or spoon. I don't swap knife and folk (American style)

On a budget, I'd buy just the folk to see if you like it. $14 on Amazon.

Kinsman Enterprises 11791 KEatlery Weighted Dinnerware Fork

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I rest my arm on the edge of table, then with movement stab salad and eat, arm comes back down to resting on the table.

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For the time being, try rubber banding something heavy to the handle of a utensils. I like fat handles, easier to grip and hold. Admitted a piece of scrap brass is handy to try with, but brass scrap cost most than the utensil itself.

How good is her memory?

Medication at 10 AM, Noon, 2 PM. I can put all five pills in one "noon" compartment that I transfer to a small pill organizer at 10 AM.

My daily regiment (fill once a week). Typically home in the morning and evening, but need to carry day time medications. The 2x7 has pop-out boxes making that task easier.

My vitamin/supplement stack goes into another box.

I know some pharmacy supply pill packs. Blister packs with that day's medication. So tempting as I could have a ribbon with pills, but you need to carry small scissors. I have a hard time with my hands, but a small swiss army knife helps (this thing is 2" long).

The caveat with the blister packs, we (my MDS and I) keep adjusting medications every three months. Little tweaks to keep me active and thinking, but it is a challenge. I still want to bicycle the Southern Tier (San Diego to Florida). That's a lot of pills!

Try amazon smile to donate to charity automatically at no cost to you!
https://smile.amazon.com/HQMaster-Straight-Milling-Cutting-Tungsten/dp/B078MJCZFK/ref=sr_1_5?dchild=1&keywords=1%2F8+carbide+straight&qid=1601428407&sr=8-5
^^^I'm ^^^a ^^^bot ^^^and ^^^this ^^^action ^^^was ^^^preformed ^^^automatically.

https://www.amazon.com/Zhehao-Metronome-Multifunctional-Adjustanle-Saxophone/dp/B07JPXRL7K/ref=pd_cp_267_3/139-7682320-2939740?_encoding=UTF8&pd_rd_i=B07JPXRL7K&pd_rd_r=9b221d17-3d51-4ab1-921c-e8fdb59f3bb2&pd_rd_w=K9Thz&pd_rd_wg=K8tIu&pf_rd_p=ef4dc990-a9ca-4945-ae0b-f8d549198ed6&pf_rd_r=JW4JZACJ822TQ9PTK7JB&psc=1&refRID=JW4JZACJ822TQ9PTK7JB

The Case of the Frozen Addicts: How the Solution of a Medical Mystery Revolutionized the Understanding of Parkinson's Disease. Amazon link Is a good book about the cases in the San Jose area around 1984.

Horrible cost to young lives involved, but helped with the understanding of what happened.

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Thank you. Not sure what brand/items you used.

I noticed this on an Amazon review. Pretty nifty hack, to add to a door sensor (i.e.if starts to leave the house)

Honeywell RCWL330A1000/N P4-Premium Portable Wireless Doorbell / Door Chime and Push Button >Works great, but needs modification for window door alert. https://www.amazon.com/gp/product/B01MEBX04S?ref=cm_sw_em_r_lb_dt_tBnP4yIKmjndA

Google Arcade Basketball

Example https://www.amazon.com/Giantex-Indoor-Basketball-Game-Electronic/dp/B01LYQNF6G

Biggest improvement those of with Parkinson's can do is social exercise. So a full-size basketball court with friends as we take free throughs with friends to return the ball. I actually did that with part of Parkinson's class and had a blast, but we have limited times/holidays when the school gym was available for us (classes not in session). I had to admit it was fun. Lots of level appropriate physical activity for a 90 minutes session. I even made a few three-pointers!

Sure. I did a very (very) brief read on one theory of how PD works and it involves abnormal activity in the thalamus.

this is significant to TM since the deepest point during TM is called samadhi or pure consciousness, where the brain seems temporarily unable to process either incoming data OR ongoing thalamocortical feedback loops between the cortex and the thalamus. This is "experienced" as a period of "no experience" even though the person doesn't seem to have fallen asleep.

That Fox gets temporary relief from an abnormally-firing thalamus after practicing something that can temporarily suspend ANY firing from certain parts of the thalamus is not that surprising. What is interesting is that his relief seems to persist for a moment after meditation is over and that the effect from TM continues, even as his disease progresses, or so Fox's quote for the book suggests:

“I can’t say enough about Bob Roth and Transcendental Meditation. Stillness, true stillness, of both mind and body, is a gift. TM taught me how to access that stillness and open that gift every single day.”

Looks like ages were updated. :)

Rheumatoid Arthritis and Parkinsons tremors do make kitchen task difficult!

Reminds me time for new gloves. Food Safe Knife Resistant Gloves. Big hand size

Amazon link Ouch, didn't realize it was $124.95 I'd order from Amazon and start using it immediately. If it doesn't work for him, then no hassle returns!

One of my speech therapist tricks: speak with a pencil being held by your lips. It forces you to use your diaphragm and throat to speak clearly.

After speaking with a pencil in my mouth, then I do my "pencil push ups" to keep my eyeball muscles in shape.

You're not alone, one of the best resources is the National Parkinsons Foundation. parkinson.org

If you have already picked up a copy of "The New Parkinson's Treatment Book" by Ahlskog -- recommeded to buy a copy and send to your Dad and his caregiver.

One of the hardest parts is being able to focus on what is being said. In the past you probably never though twice about the radio or TV being on the back ground. These days I can not focus on what my wife is saying when there is back ground nose. It is frustrating for her as I am not paying attention and pause midsentance, yet I hear her and the newscaster and am not focused. Don't turn off the TV, but turn it down. Oh with a softer voice, I think she hears and understands, but I am speaking too softly. Crap.

Video hit home as I love espresso at home. Mr Coffee Barista works great

The dreaded 'foot drop' always gets me. One reason I love walking with my Golden Retriever is if I fall "I'm not some drunk guy" but more of person "who fell, with that pretty Golden Retriever"

On Movie Theaters -- thankfully we have iPIC. Big recliner seats, two seats together with a center console. Best part is back row, full reclined and my tremors don't disturb anyone else. Yes,I've had people ask "can you sit still?" during quiet movies, so best to go to IPIC for those unless an action thriller with lots of action!

With Ropinrole you want to take it slow on the ramp up. I think you are experiencing the "ah crap" feeling when things change too fast so give it a couple of weeks.

I really respect Dr Ahlskog's "The New Parkinson's Disease Treatment Book" - 2015 edition when it comes to understanding how to ramp up & ramp down on medications. Slow and easy is good. Amazon Link. Just remember to use smile.amazon.com and sign up your favorite charity.

With "eBay buy it now" I'm never going near an Agonist again. It works great for 80% of the people, but for 20% of us it can be one hell of a ride. I still have to avoid Amazon.

I'm going to leave the personal advice to the rest of the folks here as I only have a two month head start on you.

But I will say this, I have been reading this book recently.

http://www.amazon.com/Parkinsons-Disease-Johns-Hopkins-Health-ebook/dp/B00FGTGOJ6

I was given the name of a few other books to read, and started in on them, but they just didn't seem to speak to me. I wanted facts and figures, etc, not a "pick me up cause it's not as bad as you might think" read.

The above book is straight forward and heavy with the facts. It is a dense read, for sure. But if you're anything like me, and judging from way you wrote in the original post, I think you might be, this might be the book for you.

Hope this helps.

Voice recognition (uses Google Now) is done by AutoVoice

https://play.google.com/store/apps/details?id=com.joaomgcd.autovoice&hl=en_GB

AutoVoice is a plugin for Tasker

https://play.google.com/store/apps/details?id=net.dinglisch.android.taskerm&hl=en_GB

running on Android

There's a really good subreddit

/r/tasker

with a sidebar full of tutorials.

EDIT: I posted the code but it was bigger than I thought!

My situation is similar. If you do Android, check out Tasker and the AutoApps plugins. Good fun and you can make stuff to help with the PD symptoms.

https://play.google.com/store/apps/details?id=net.dinglisch.android.taskerm&hl=en_GB

https://play.google.com/store/apps/details?id=com.joaomgcd.autoappshub&hl=en_GB