Parkinsons

[Dave C.]

Anyone have anything or idea to help slow it down?
I am seeing a neurologists but they can only treat the simptoms.
They say that nothing can even slow it.
At this point I might try anything.

[lefty o]

they had something on the news around here about a year ago. they had a few local gyms set up specifically for parkinsons people. to me it looked like the main activity was hitting a speed bag, but they did other light excercises that depended largely on hand/ eye coordination. seemed to me like their objective was to get some excercise, but mainly to keep the mind and body working together.

[DCP]

Stay tough Brother

It took my father. Get to a support group.

My My all the pills he took.

If you need to talk or just want to send me a pm

[RogerDat]

Sorry to hear of the rough road you have to travel. I would think that repetitive physical activities that might add new muscle, nerve, brain paths and reinforce the existing ones might well help. Things such as the speed bag or jacks or other activities where you might maintain those neural paths by rebuilding them.

Similar to a spinal injury patient doing a powered exercise bike helping to maintain or preserve leg nerves and muscles. Good luck.

[popper]

Good friend has it, takes some meds 4 x daily for symptoms. Keep active as long as possible. Don't get frustrated! He got fast tracked with the VA due to A.O. exposure in Nam.

[square butte]

I would suggest a VERY GOOD Naturopathic Physician. Many times these folks have treatment ideas that can be quite beneficial to those that the regular medical community is unable to help - Dietary modifications, supplements and other modalities depending upon your unique expression of Parkinsons and any other underlying conditions which may be contributing to illness

[Bad Ass Wallace]

I feel you pain brother, I suffer from neuropothy in my hands and feet, making great difficulty walking or gripping a handgun, but while there is breath there is hope.

God Bless and keep you safe!

[NyFirefighter357]

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Medical-Marijuana

https://www.michaeljfox.org/news/ask-md-medical-marijuana-and-parkinsons-disease

https://www.mdedge.com/neurology/article/141080/parkinsons-disease/can-cannabis-help-patients-parkinsons-disease

https://parkinsonsnewstoday.com/2018/02/19/medical-cannabis-safe-effective-older-patients-parkinsons/

[bikerbeans]

A very good friend of mine was diagnosed with Parkinsons in 2003 and passed away in 2015. He went through several doctors and clinics before he found real help. Nothing yet will cure Parkinsons but the right therapy can slow the progression. I wish you the best.

BB

[Pressman]

Three years ago Nov.6th I lost my wife to Parkinson's. Life has not been the same since she left. She had early onset and passed away at age 68. She was at the point where medication could offer nothing more, so she decided to have the Deep Brain Stimulation surgery. That went well, getting the device calibrated to her was a struggle that we never completely achieved.

As the symptoms progressed falling was her greatest issue. The DBS stopped all her falls for 11 months, then she fell down the basement stairs face first. She never woke-up from that.
There are several exercise programs that can help, but there is nothing long term that makes a real difference. Even the meds can cause issues. Read the paperwork for all of them to learn the side effects. One of them increased compulsion behavior in a major way. My wife was a shopper and we went shopping at least once a week to deal with her compulsion. Gambling is another issue to watch for.

Now, I still have her U-Step walker and electric wheelchair along with a transport chair she used. I would love to donate them to another Parkinson's person who needs them.

[lefty o]

https://minnesota.cbslocal.com/2019/06/03/title-boxing-club-parkinsons-patients-sessions-arden-hills/ here, found something on this.

[Ford SD]

Not sure if a diet change will help
https://forum.parkinson.org/topic/22411-plant-paradox/

https://www.michaeljfox.org/grant/dietary-lectins-and-parkinsons-disease

I started the Plant paradox diet, to help with my early RA
https://humanfoodbar.com/plant-paradox-diet/plant-paradox-diet-full-shopping-list-for-lectin-free-diet/

I am only 3-4 weeks in to the diet, Have lost about 5 lb and have not taken a pain pill in 3 weeks ( only took on bad days) Ankle pain

Ankle pain and I work retail .. always walking/ standing

Bought a Air frier and a Instapot ....

Miss..... French fries and potato chips the most ... but the pain level is down for me .... diet is supposed to help with a lot of problems

Favorit dish so far is cauliflower Pizza ......Gluten free ;) 9/10

Gluten free Pancakes ... 8/10

making Sweet potato fries 9/10

[Ford SD]

There is no clear proof that aluminum exposure could lead to Parkinson

But I would not be cooking My Food in aluminum pots and Pans...... Switch to Stainless steel and Cast Iron

[Beerd]

Anyone have anything or idea to help slow it down?
I am seeing a neurologists but they can only treat the simptoms.
They say that nothing can even slow it.
At this point I might try anything.

Dave,
Everyone is different. "When you've seen one Parkinson's patient you've seen one Parkinson's patient". Saying the disease process can't be slowed isn't totally accurate. See if there is a support group in your area. Maybe someone there can point you to a different doctor.

Exercise is good. Any kind. Look into "Rock Steady Boxing" for a program to try out.
Find that support group. Continue to socialize, don't isolate yourself. A positive attitude goes a long way.
..

[Wayne Smith]

Investigate stem cell therapy. It and the deep brain stimulation are the only known effective treatments as far as I know. Exercise programs aim at teaching other parts of the brain to pick up the functioning of the cells that are dying. The brain is plastic enough for this to work, but it is work.

[FISH4BUGS]

There has been some study on medical marijuana helping the symptoms. Not sure where you live it is legal but don't rule it out.

[Dieselhorses]

CBD oil (prescription) if legal in your area. Doesn't get you high but greatly reduces symptoms and has been known to cure a variety of other diseases.

[Dave C.]

Thanks for your ideas

[Char-Gar]

I have no medical or therapy advise to give, but be assured of my ongoing prayers.

[brewer12345]

Watched my father in law struggle with it for years and succumb a couple years ago. Stay positive, talk to the docs, and get exercise that will help retain body mass and balance. Eat a lot. It was tough for FIL to avoid losing body mass. On the plus side, a lot of times Parkinson's is slow moving. If that is the case for you, get out and do the stuff you want to do while you can.

You will be in my prayers.

[parkerhale1200]

Stay active...all i can say, and good luck of course.
Don;t be like my old man, stay active, walk, ride a bicycle, shoot poll, play darts, go to different shooting alleys, ect!
Keep that grey stuff going....

[sparky45]

Two things that have been suggested above are of greater benefit IMO; First and foremost is physical activity and second was mentioned by Wayne: Stem Cell therapy. My wife was diagnosed with PD about 20 years ago. She has been through most ALL pharm meds and now is only on Carbidopa/Levodopa as a tablet and as a capsule(Rytary). During her illness, she also had to be operated on for Colon Cancer. She continues to loose weight but we are in contact with a Medical Clinic outside of Denver that does Stem Cell Therapy and will probably be heading that way in the near future. Also looking into CBD for Parkinson symptoms. I wish you well in your therapy and remember Physical Activity is key to long term therapy(s).

[Beerd]

..................................... get out and do the stuff you want to do while you can.

You will be in my prayers.

And mine.
..

[Ramson222]

As a Acupuncturist, I can tell you parkinsons is extremely difficult to treat. A treatment might make your symptoms go away or do nothing at all. It is really hit and miss as to what the results will be. The key is not to give up on acupuncture after 1-2 treatments. If you have a Acupuncturist that does Chinese herbal medicine, I suggest seeing them first and to get both herbs and acupuncture. Scalp acupuncture with electrical stimulation seems to be very effective at treating parkinsons. https://www.atcm.co.uk/scalp-acupuncture-treatment-for-parkinsons-disease is just one example.

Be Well

[wgr]

Look up DBS. I had this done and it helped a whole lot. If you would like to talk about thid send a message.

[jonp]

Stem Cell treatment and hyperbaric chambers.

[Tom W.]

My DIL said that my first wife has been diagnosed with it.

[Beerd]

Dave C.
If you are not already overwhelmed with info, take a look here:

https://www.davisphinneyfoundation.org/blog/parkinsons-101-a-video-for-the-newly-diagnosed/?utm_source=Davis+Phinney+Foundation+Newsletter&utm_campaign=3c9ecb8050-EMAIL_CAMPAIGN_2018_09_12_05_56_COPY_01&utm_medium=email&utm_term=0_d7445ab902-3c9ecb8050-181722993

..

[bmortell]

im no doctor or knowing what im talking about, but I do know some things about mushrooms, and there's a type called lions mane that has compounds which increase nerve growth factor and can regenerates the coating on nerves, and Parkinson's is a nervous system condition.. so maybe it can help ??? I cant imagine it would hurt anything its just healthy food really.

id recommend host defense brand as im familiar with the guy who owns it and he's very good.

its cheapest on amazon as "host defense lions mane powder" $22.46 for 2 months worth

[Handloader109]

Side note, Totally unrelated to this topic except that some folks are getting misdiagnosed with Parkinson's.

My wife was prescribed quetiapine brand name Seroquel off label to help her sleep. Has trouble with sleep apna and this helps her relax enough to sleep with her machine. Been using for about a year. Lately several side affects have popped up, one being hand shaking. Is a KNOWN side affect for this medication. Should really NOT be prescribed off label, as it is for schizophrenia and she doesn't have that issue.
Stopped taking a week ago, and a lot of the issues have disappeared (not only hand shaking, but major anxieties)

Just sayin' make sure you are truly diagnosed properly.
And good luck to you.

[nueces5]

I am very sorry that I suffered from this horrible disease, in my hospital, a neurosurgeon friend was starting to treat patients with a stereotaxic framework, he said that the patient was improving a lot. I understand that it is a fairly expensive procedure, and that the result is variable among patients.

https://www.youtube.com/watch?v=MEBdXbZ5CDM&has_verified=1