[Andrew L.]

I am guessing I had PD at least 2 years before actual diagnosis (maybe longer). I had all but given up on lifting weights as I was literally crippled after lifting 30% of what I did when younger. Pain and stiffness after made it unbearable. When I started the carb/levo I found that I could lift weights again, as long as I stretch afterward. Obviously not where I was in my youth, but significantly better with this now. Jean, I am wondering if you have discussed selegiline with your neuro? My neuro calls it an “enervating” drug , and I believe it counteracts fatigue…but that just may be my body, I don’t know….

[Andrew L.]

Seconded!

[Andrew L.]

A mess indeed. We just need the strength to stay positive one day and sometimes one moment at a time. After thinking about it , there really is no other choice.

[Andrew L.]

Hi Jean: Have been on it for about a month. Without concrete scientific testing , there is really no objective way to know if it is helping me or not. Am throwing the kitchen sink at PD so no way to know what helps and what doesn’t .

[Andrew L.]

Lion’s Mane mushroom supplement looks interesting. Claim is that it stimulate neurogenesis. Obviously a very long shot, no FDA approval etc. but seems pertinent if claims are even remotely true. Supposedly no side effects, can’t personally vouch for safety or efficacy and this is not a recommendation though I am taking it myself.

https://koplayers.info/show/OUUwUjE4dFJWN2c.html

[Andrew L.]

Also with unexplained shoulder pain. Went to a top ortho surgeon where I lived who wanted to operate. Told him I was worried I might have PD because I had had tremors in same extremity (that had since resolved) and he literally scoffed at me, said “u don’t have that”.  Got second opinion, this ortho didn’t think surgery was indicated based on MRI findings (thankfully). Later started having diffuse pain with any kind of exercise, crazy stiffness, self diagnosed with fibromyalgia (wrong.)  Suffered through bouts of excruciating back and neck pain and stiffness. Took a new tremor in hand plus other diffuse symptoms (masked facial expression, bradykinesia) to finally see a neuro and get diagnosed, prob close to 2 years after initial presentation of shoulder pain. I think shoulder pain is a very common presenting symptom (it certainly is in our little group!), tho I am of the opinion most docs are unaware of this.

[Andrew L.]

Stress of any kind unequivocally makes all my symptoms worse.  Unfortunately I once heard that there is  no stress only when we are either dead or in a coma (weak attempt at gallows humor).  Have to cut back on exercise when stressed, obviously take proper med doses, and increase rest. Meditate. Generally feel better when stressor passes. While I try to always eat healthy, stressful times are definitely not the time for eating junk (sugary foods) which make everything worse in my experience. Sorry about your sad emotional issues Jean…hope you have a support network to help….

[Andrew L.]

I have been on it for about 6 months, which was about 2 months after diagnosis.  I do need a lot less sleep then I used to, and have enough energy to do some serious exercise for several hours each day. I think it also helps keep me on a lower dopamine dose. That said, I  often have some serious insomnia; not sure whether this drug contributes to it or not.  It is taken 2x per day, first thing in AM and then before noon. I believe one of its metabolites is actually methamphetamine, which could explain the insomnia..then again maybe not, I don’t know. The drug also comes with a lot of “black box” warnings about drug and other interactions, many of which I believe are not valid and are remnants from the older group of non-selective MAO inhibitors. Hope that helps.

[Andrew L.]

Yes I do. One of my main problems is sleeping;  the amount of sleep I get determines how fatigued I am next day. I am on round the clock meds roughly every 4 hours and sleep from 12-230AM, 330-7AM and sometimes 7-9A.  What I wouldn’t give to sleep once thru the night 🙁 . When I wake up in middle of night and how long I stay awake is big wild card . If I am awake for longer than 2-3 hours in middle of night and then don’t get that 7-9 AM rest on top of it, next day am very fatigued. Along with carb/levo I take selegiline which is supposed to be enervating as it has methamphetamine metabolites. I attribute a decent part of my energy to that.

[Andrew L.]

Yes, and still am. Do Parkinson’s specific exercises with trainer 3x per week for 30 minutes. Includes lots of big and rapid movements, balancing stuff, and leg strengthening (squats and lunges.) Also throw in some cognitive stuff while doing this for good measure. Go on treadmill at least 2x per week. Lift weights at least 2x per week. Stretch almost every night (30 minute yoga routine). Try to do boxing at least 1-2x per week. Was playing tennis (doubles) 2-3x per week but can no longer tolerate heat (live in Florida) so had to take summer off. Switched to competitive indoor pickle ball 3x per week. Usually good for at least 5000 steps on my fit-bit :).  Goal is always 10000 steps / day. Am hoping all this helps, I guess time will tell.

[Andrew L.]

Left arm tremor (went away). Near frozen left shoulder. Went to ortho who wanted to operate on partially torn muscle in that shoulder (fortunately got 2nd opinion, no surgery, had P.T. but in retrospect am pretty sure this was Parkinson’s.). Stiffness in neck and hips. Finally left leg tremor, then diagnosed. Was told same thing by first neurologist..bad news is you have Parkinson’s . Good news is you will probably die with it, not from it. Also told I had a 100% chance of ending up with senile dementia (sorry I asked), even though my cognitive functioning was/is  100% normal. Now am in much better hands, and a bit more optimistic.

[Andrew L.]

I find selegiline (taken 8am, 12 pm) to be an energizer, perhaps because it has methamphetamine metabolites.

[Andrew L.]

Every time I try to wean it is a bit of a horror show. Also left wondering if it is disease progression or body is just getting used to meds. Am at the lowest dose I could function fairly normally at, but worried how long it will last.  Anyway now on Selegiline 2x per day (8 am and at noon), take 1/2 carbidopa/levodopa  8am, 1 at noon, 1 at 4 pm, 1 at 8 pm, 1/2 at bedtime (around 1130), and 1/2 if I wake up in middle of night (which is almost always). So 4 1/2 carbidopa/levodopa pills total over 24 hours. Every time I try to cut back from this (usually by taking a half instead of a whole or omitting a dose) my symptoms get much worse (mainly rigidity.) Also using CBD 5 mg under tongue 2-3x per day. Living life fairly normally. exercise a lot. Am worried though about how long this will remain effective and if/when will get dyskinesias

[Andrew L.]

Relatively new onset, in my 60’s. I tried rasagiline, then switched to selegiline 2x per day. Then added in carbidopa/levodpa 25/100 gradually. Now on Selegiline 2x per day (8 am and at noon), take 1/2 carbidopa/levodopa 8am, 1 at noon, 1 at 4 pm, 1 at 8 pm, 1/2 at bedtime (around 1130), and 1/2 if I wake up in middle of night (which is almost always). So 4 1/2 carbidopa/levodopa pills total over 24 hours. Every time I try to cut back (usually by taking a half instead of a whole) my symptoms get much worse (mainly rigidity.) Also using CBD 5 mg under tongue 2-3x per day. Living life fairly normally. exercise a lot. Am worried though about how long this will remain effective and if/when will get dyskinesias

[Andrew L.]

Mike: Thanks for sharing thoughts on T replacement. Interesting , they used to think it was a no go for men with high risk of prostate cancer, newest studies (in last 2 years) now show no increased risk. Will see what my uro thinks. Since have family history of pr cancer, never got t levels checked, now will do it, tho think that is not an issue for me (but sleep certainly is)  .

[Andrew L.]

Hi Mike: I never saw the piece.  Can you resent or post here?

Thanks, Andrew

[Andrew L.]

“I’ve spent my life overcoming obstacles from poverty, military, college, etc. Therefore, staying positive with PD has been not been so hard. ”

 

Thank you for that Michael, it resonated with me. Told people at boxing today about it!

[Andrew L.]

I am 62

[Andrew L.]

My initial neuro visit was prompted by RLS, my first neurologist told me the only cure was surgery (DBS), which prompted me to find another neuro. Fortunately he was wrong, and the carb/levo pretty much did the trick at least for now. I also tried CALM (Mg preparation) before my diagnosis of PD, but it did nothing.  Like Lou,  insomnia is my worst issue, by far. First off, I don’t think my brain has a circadian rhythm anymore (i.e. it doesn’t know day from night).  Also every time the dopamine wears off (b/t 1-3 am), I can’t sleep ( I take a dose at 11 pm). Then I take it again and have to wait at least an hour (sometimes significantly longer) to go back to sleep. So sleep is from 12-130 ish (I wake up and think it is morning) and then maybe 4-7 . On a good night. What I wouldn’t do to sleep thru one night; hate to complain but I guess that is what this forum is for.  Wondering how many are having these issues and whether this is worthy of a new thread…Note: when able I exercise a lot during the day to try to exhaust myself but this does little…

[Andrew L.]

Hi Jean: Exercise definitely helps with stress. However when stressed and not sleeping (or sleeping less than 3-4 hours a night) then have to cut back on exercise a bit…unfortunately. There seems to be a fine line sometimes b/t pushing the body to alleviate stress and knowing when it is time to rest because the body is at risk of  breaking down, raising the  possibility of making symptoms worse or even getting sick.  Probably a work in progress for the rest of my days.

[Andrew L.]

Written out plan. I phone alarms, daily and nightly pill box.