[Andrew L.]

I have a medical background and am not afraid of the surgery per se. I am about 4.5 years in, and while my quality of life is better than most, I am strongly considering undergoing the procedure proactively before I deteriorate further. Note: Am now up to 1 C/L  25/100 every 3 hours pretty much around the clock with occasional rescue doses when vigorously exercising. My understanding is that DBS is not meant to replace medication, just supplement it. I believe current thinking is to not count on cutting back on your meds at all after DBS, but to just expect a reduced likelihood of dyskinesia from medications. DBS is not meant as a cure, but helps certain symptoms improving quality of life. Speech impairment generally manifests as a quieter voice (most require speech therapy), while cognitive impairment most commonly manifests as difficulty coming up with certain words when trying to express yourself. I believe your baseline cognition pre-DBS also influences the cognitive outcome.  Both adverse effects (speech/cognition) are thought to be more common when one gets bilateral vs. unilateral treatment. If anyone disagrees with what I have written, then please inform me as I am not a neurologist.

[Andrew L.]

My first ( many years before diagnosis) and worst symptom of PD.  Have tried everything, here is what have come up with.  First off , I don’t like addictive meds so that rules out all of the benzodiazepines (Valium Xanax all of the drugs ending in azepam etc. I find the following helpful: 1)Mirtazapine (an anti anxiety anti depressant)at a low dose has sleep inducing side effect 2) melatonin which I take is probably a placebo as is cbd 3)meditating in the middle of the night when I wake up helps4)taking a c/l when I wake up in the middle of the nite “off” helps 5) the orexin inhibitors are a miracle drug for me and I sleep like a baby… but try to limit to 3x per week as leave me a little foggy when taken multiple nights in a row 6)I keep a massage chair in my bedroom which helps as well .  Note: was recently diagnosed with sleep apnea but can’t find a machine . Also I exercise daily ….eat well etc

[Andrew L.]

Am 65 and consider myself an athlete , exercising about 2 hours per day on average . Started on selegiline 4 years ago , now on 100/25 c/l 6x per 24 hours. I believe Pd is a complex syndrome and each patient is somewhat unique i.e. one size does not fit all. Have done a lot of research and don’t see any downside with c/l provided it helps. Started on 3 pills total per day , then became 5 then became 6 as I would wake up off in middle of nite and needed it to get back to sleep . Have been at 6 a few years , disease gradually getting worse , will prob strongly consider DBS if it comes to that. Until then it becomes a quality of life issue and I strongly believe I would be non functional without the meds (as opposed to fully functional right now …)

[Andrew L.]

I view myself as a stronger person (mentally and physically) than I thought was possible before being diagnosed. I use the diagnosis as a reason to take the best care of my physical and  mental  health as is humanly possible. When my body and mind allows me to do these things, I  feel good about myself.   I view small victories (still doing things that I could do before) as victories, not something I take for granted. I  sometimes view overcoming the obstacles to being on a heroic journey on which I am a warrior.  I am enlarging my community of friends and feel great kinship with my fellow warriors who have this diagnosis.

[Andrew L.]

I believe you are talking about Indica (versus Sativa or Hybrid), which is a strain of THC that requires a medical marijuana card to purchase (unless you live in a state where the drug is available for recreational use; then you can walk into any dispensary and buy it). Don’t know enough to comment on its use for  REM-SBD. However, given that THC is psychoactive and dopamine is psychoactive and some people with PD are known to have hallucinations and develop dementia, it is probably a higher risk option (and therefore probably not recommended by most neurologists) for sleep in patients with PD.

[Andrew L.]

Sleep issues are my worst PD symptom. Tried everything mentioned in this forum and then some, except Mannitol which I do not believe in. Only thing that makes a true difference for me are the Orexin receptor antagonists. Take this 2x per week, the only nights I pretty much am guaranteed a good night’s sleep. Would take it more but do not want to get tachyphylaxis…

[Andrew L.]

Educate yourself, there is a lot of info out there. It’s a wakeup call to get active (exercise). Reduce stress as much as possible.  Find a support group. Get a team of doctors (preferably someone specializing in movement disorders) and/or therapists (P.T. and psychotherapy, etc). Take advantage of the multiple free outreach programs put on by many hospitals.  If severe or you are older, consider retiring if still working. Learn to meditate or whatever it takes to quiet the mind and stay in the moment.  Do things to help cognition (read, games, puzzles whatever).  One day at a time.

[Andrew L.]

Stress makes everything worse, however it has been said that the only time we (humans) have no stress is when we are in a coma or dead. That said excessive stress is best eliminated when possible, as the disease with its fluctuating brain dopamine levels  is stressful enough, thank you very much. CBT has been around for decades and is a widely used treatment in conventional psychology. Many therapists “specialize” in this area. Personally I prefer mindfulness but agree it is difficult (but not impossible) to be mindful when in a Parkinson’s off period. One way I try to do it  is when I am in off period I try to get present and remind myself  that I am safe and nothing threatening is actually happening in my environment (in fact nothing has changed).  I am aware that my body is having uncomfortable  sensations and I may name them, and I aware that any negative thoughts I may be having about these bodily sensations are merely thoughts.  Then it is back to the breath. While  the uncomfortable body sensations and negative thoughts can be quite uncomfortable, I may again remind myself that they are in fact 100% meaningless. Moving around and if possibly exercising at these times definitely helps me as well, and I have come to believe that exercise helps in the uptake of dopamine into my brain, so I like to do it especially right after I get a dose. Personally don’t like taking benzodiazepines (drugs like xanax) for anxiety as that can be a slippery slope I would prefer to avoid (but to each his own). Anyway that is what is working for me for NOW , the only time there is…..Hope that helps a little….

[Andrew L.]

I periodically have it too. Very disconcerting. Have thought it is caused by my dopamine levels dropping to low, but I don’t know.

[Andrew L.]

Am getting ready to try the Tom Brady exercise program (TB 12 program, ordered all the equip from Amazon). If he can do it why can’t I? Who cares if I am more than 20 years older and have PD? Certainly not him and not me either.  So far today I did boxing and Chloe Ting (on you tube) abs. She has many other great workouts as well, just need some free weights. Now am going for a bike ride (lucky to live in Fl). I have stationary bike and treadmill in my house. Enjoy doing Yoga with Adrienne on you tube at night.  I hurt all the time, that plus insomnia are  my worst symptoms, am planning on pushing through for as long as I am upright and able as TINA (there is no alternative.) Every time I exercise I view it as a big f/u to PD and all it entails.

[Andrew L.]

I had vaccine number 2 (Moderna) 2 weeks ago. Felt nothing after vaccine 1, after vaccine 2 had a horrific night. Rotating (throughout my body) muscle spasms every hour, Parkinson’s symptoms in general MUCH worse than I have ever experienced etc.  Ended up doubling up on my dopamine medication over the 24 hour period (which helped), then took it back to normal. Back to baseline 48 hours after vaccine. Spoke to my highly regarded neurologist, he said what I experienced was normal and it was smart to take the extra dopamine when needed. Now feel good and am thankful for some immunity!

[Andrew L.]

Hi Ian:

Am a young 64/athlete. Diagnosed 2 years ago. First noticed tremor in left hand 3 years ago. Followed by what I thought was a frozen should (in hindsight it was PD onset.) Followed by tremor in right leg/ esp foot. Was then diagnosed (had decrease L arm movement, no facial expression, emotional lability.) First neuro I saw told me the only way to get rid of tremor was DBS. Wasn’t true, Carbi/Levo + Selegiline did it. Now only tremor when agitated/stressed or after significant exercise. Not noticeable by anyone but me. However all symptoms are worse at night when tired.  It is what it is, my advice would be to stay positive and get into the best physical shape of your life if your overall health allows it.

[Andrew L.]

Exercise apparently  helps in Parkinson’s by increasing the release of neurotrophic factors as mentioned above….making exercise a key component to the puzzle.   One problem apparently is that every time the research scientists come up with an important basic science research modification, it takes years for the new information to translate clinically as new clinical trials are needed. So if you are a few years into a clinical trial and then find something better, you just can’t switch it out…. Bottom line is there can be a huge lag (as in multiple years) between the basic science research breakthroughs and the actual clinical applications.  Finally, COVID slowed everything to a near halt making 2020 essentially a lost year.  Sorry if that is too negative, I have PD but also think it is important to keep it real…

[Andrew L.]

https://www.youtube.com/watch?v=izByNv8wE5g&t=237s

 

Watch from 4 minutes on, reminds me of “awakenings”

 

Doesn’t address what Bill is talking about tho….

[Andrew L.]

Never tried Butyrate. have been on Niacin for 25 years for high cholesterol, diagnosed with Parkinson’s just a few years ago.

[Andrew L.]

I don’t think the placebo effect works if you know it is a placebo.  The point of the placebo effect is that it occurs only when the patient believes they are taking something that works, as in a double blind study (or for example if you read about something in a nutrition mag and believe it, even if there is no scientific validity.) I believe (don’t have science to back it up, not sure there is any) that pure CBD is a placebo; however if you mix it with some THC you can get the so called “entourage effect” . How to mix it seems to be trial and error, but 2.5 to 5 mg THC mixed with CD (perhaps 5-10 mg ) could be a starting place. This should be done under medical supervision imo, and dosed by a doctor like other meds are dosed. My personal experience is that pure CBD does little to ameliorate the symptoms of PD, namely anxiety , tremor , pain and insomnia.

[Andrew L.]

Ran behind the DDT truck as young child laughing in the fog many summer nights. Used to call it the “fogging man”. Big treat then. NOT NOW 🙁

[Andrew L.]

The day  I got my diagnosis I presented with foot tremors. The neuro told me they could only be relieved with brain surgery.  However getting treated with carbidopa / levodopa and selegiline, they went away (for the most part).

[Andrew L.]

I had orexin inhibitors prescribed by a neuropsychiatrist. He has hundreds of pd patients and claims to have used them with great success. He also uses them on his Alzheimer’s patients .  It is not the be all end all as after a few days it causes me  some daytime foginess…so I try to take it every 3rd day. While this is obviously anecdotal, they give  me the best sleep I have had in years and certainly since I was diagnosed … normal dreams , not thrashing , wake up feeling refreshed….this is obviously not to be misconstrued as medical advice am just sharing my personal experience in an attempt to help others. Certainly would not recommend without doctor supervision  ….

[Andrew L.]

Hi Mike: I have a massage chair which is in my bedroom for those times the meds seem not to work . It also doesn’t breathe on me and I don’t have to wear a mask haha. Am fighting tooth and nail not to up my meds will see what happens ….first 2 -3 years c/l was a wonder drug now more hit or miss. I exercise almost maniacally but tore cartilage in knee (prob running up hills) so now need surgery. Will continue to keep fighting no alternative. Thanks for feedback

[Andrew L.]

That was great information David, thank you. I am 4 years into PD (65 in a few weeks), a retired physician (anesthesiologist) and have become somewhat of an exercise junkie since I got this diagnosis (actually has always loved exercise, now I have an excuse). I have also experienced that “glow” you  talked about usually after 90 minutes of (outdoor) cycling or running (after a few miles) on the beach. The glow lasts as long as I continue exercising past that point and if I am lucky for a few hours after I am done. At these times I have also felt like I no longer have PD and I feel euphoric (too put it mildly). Unfortunately these big workouts take a heavy toll on my body; in particular I get severe lower back and hip pain when I do this much. Of course I utilize ice, advil, stretching etc. so as not to be crippled. I also like to do Rock Steady boxing a few times per week (big here in Florida for PD), indoor cycling, treadmill, strength training, and pickleball. Plus light yoga 3x per week. I am a lifetime tennis player, but now only rarely as it seems to bother my back (as does pickle ball truth be told).  Often wonder  what is old age pain vs. PD pain.  My neruro PT told me to keep pushing through the pain (she suggested ice baths) while my neurologist/ movement disorder doc thinks I do too much and should back off (which lately my body is forcing me to do anyway).  I would also like to add that when I am on the reclining lifecycle indoors I often do cognitive puzzles, and after an hour of this  I find my cognition improving. Anyway thanks for the exercise physiologist idea, will look into that next. Cheers!  Andrew L.

[Andrew L.]

Hi Marilyne:

Wondering how high you feel after that, or do you just go to sleep? In my experience 10 mg made me quite stoned, though used pills not gummies (shouldn’t matter I don’t think…)

[Andrew L.]

Wholeheartedly agree

[Andrew L.]

Hi Kate:

Do you have more info for the mindfulness meditation class for PD?  I have done mindfulness meditation, but never in the context of PD….