Doing better now than 6 months ago.

[Bailey_Texas]

In the last 6 months i have improved my quality of life. I have less Dyskinesias if any now. I overall feel better. I stopped taking Azilact and my night time depression has gone and I no longer loose control of my feelings. I know longer worry about things and no longer feel doom and gloom. I have more energy. I am stronger. My best weight lifts have gone up. Dead lift 405 pounds (183.7kg) Back squat 260 pounds (118kg). Clean and jerk 165 pounds (74.8kg). Only thing that has not improved is sleep only get 3 to 4 hours a night. Went to sleep at 6 pm woke at 11:30 pm and did not sleep again till 1 am the following day (25.5 hours). I do fine on this amount of sleep but would like to improve on it.

What i have changed. I no longer take Azil.ect, I take vitamin D every day 6 50/200 extended release carbidopa levodopa, 6 25/100 carbidopa levodopa, 1 6mg Requip 24 hour release a day, fish oil, a muti vitaminI have increased my work out to 6 Crossfit sessions, and i do three 45 min minute workouts with my daughter, i bench press variable weights 4 or 5 times a day (145 to 190 pounds). I do the bench press to help when my meds start to wain.

Any one else doing better or found some thing that has helped them.

[BUZZ1397]

" I do the bench press to help when my meds start to wain. " I experience that effect from being active not necessarily strength training or vigorous exercise, just staying busy helps me to get a little longer benefit than usual from a dose of C/L. That "activity dividend" only happens if I am doing something that I am pressed to finish up, otherwise i would just take the meds and sit down for awhile till they kicked in. Every one can't be a gym buff like you. BTW distance in travel is not the only reason I won't drive all the way to UT S.W. to see a movement disorder specialist. I am the sole caregiver for my wife with advanced MS. Can't leave her in the care of a CNA for too long, won't do it. She is the love of my life and once before when I was out of town just to go into Tyler she had a bad fall that I would have prevented if I had been home. So, I am hoping to find a neurology certified MD right here locally that can write the prescription for Azilect and Sinemet. I haven't experienced a serious downside yet to Azilect, just some edema & mild elevated b/p. Honestly I don't get a feeling I am benefiting from it either but I will stay on it for now. I read above what good changes you noticed after quitting Azilect but you couldn't have known those things would improve. Why did you decide to quit Azilect at the time you made that decision?

[Serenity_finaly-1 in reply to BUZZ1397]

Boy, you were dealt a bad hand. I can not imagine taking care of someone else full time when I personally get tired of just taking care of myself. If Doyle Brunson can turn a 10-2 into gold I believe you can too. It looks like you might be there already.

[BUZZ1397 in reply to Serenity_finaly-1]

I am rewarded for helping my wife. Our health chalenges broought us so much closer, we are bonded. Not a bad hand. I am blessed by God, who put us together because He loves her too. God keeps me out of messes. I can't tell you countles times I feel a presence nudging me along. Who the heck is Doyle Brunson? Ive got to google him. Don't tell me I'll find out.

[Serenity_finaly-1 in reply to BUZZ1397]

I was just checking to see if you were a poker player, as well as knowing who does the voice of HAL. Trivia " Jeopardy Is more your game."

[BUZZ1397 in reply to Serenity_finaly-1]

Oh, I just read about him. What a guy. How about that cowboy hat?

[Serenity_finaly-1 in reply to BUZZ1397]

I was thinking you may have it better than most. The two are similar enough that you can empathize with each other. I hear so many breakups because they think that their spouse is faking most of it.

[BUZZ1397 in reply to Serenity_finaly-1]

We had an interesting discussion about Sci Fi didn't we? Have you seen the one called Love and Other Drugs. The movie is a romance and one of the lovers (young female artist played by Anne Hathaway) has Parkinson's. I saw it before i was diagnosed and it made me realize what I needed to do for my beautiful wife was going to be hard but rewarding if I could be dedicated like the guy in the movie. So, I thought that movie was like us, then I got Parkinson's now I sometimes feel maybe that (getting PD) is God's doing so he'd be sure to make me stay on this job. God knows what he is doing. Sometimes having good intentions isn't enough. Sometimes circumstances need to be harder so the message of what the other guy or gal is going through is clearer. No mixed feelings only certainty. Check out Love and Other Drugs, Anne Hathaway has some nice boobery scenes at least but I know you Hal will eat up the deep message, what the saucy screen play is meant to convey about being kind and helpful to one's mate.

[Bailey_Texas in reply to BUZZ1397]

I have been with my lovely dedicated sexy unmatched life partner wife mother grand mother cook healer travel partner lover for 46 years she was 15 and i was 17 when we started our life together. We where our first and only and still to this day we have known no others. Proud to be able to say this she is my rock. Dedication is it's on reward.

[BUZZ1397 in reply to Bailey_Texas]

Dedication is its own reward. On that we do agree sir. Have a good one Bailey.

[Serenity_finaly-1 in reply to BUZZ1397]

I think I caught part of that. Is that where she has Parkinson's and he is a drug seller giving out free samples? i will have to give it more attention next time.

[BUZZ1397 in reply to Serenity_finaly-1]

YES! That's the one. If you attend to what Hathaway is often seen doing, she is struggling to cope with her symptoms w/o meds as she struggles to find money for her meds. She is seen stretching, imbibing straight vodka...etc. The young man the pharmacy rep doesn't get it at first he is so damaged all he wants is a piece of that tail. Finally he gets it.

[Serenity_finaly-1 in reply to BUZZ1397]

I will have to look for it on Amazon or Netflix.

[Serenity_finaly-1 in reply to BUZZ1397]

Not that I have the gift of Empathy but I am thankful sometimes to understand for those who have mental illness or chronic pain or chronic anything for that matter.

[BUZZ1397 in reply to Serenity_finaly-1]

Yeh, you're a gift and you have a talent for redirection people as needed at times away from the unpleasantness of our shared problem. We are blessed by your presence.

[Serenity_finaly-1 in reply to BUZZ1397]

Who are you talking to???

😋

[park_bear in reply to BUZZ1397]

I was never sure if Azilect did anything for me or to me one way or the other. A while back I switched to selegiline on the chance it might improve fatigue I was experiencing. Fatigue has been better since then although that could also be due to taking NAC and nebulized glutathione.

[BUZZ1397 in reply to park_bear]

Man I have read several posts lately on nebulizing glutathione. You guys are going to make me experience that unless it has a downside. I know if there is one some one of you will post it. One of the best things about reading this bulletin board is, the news on alternate therapies gives hope where medicine does not, I mean the doctors tell us there is no cure but a bunch of us have improved our quality of life so dramatically it confuses the medics. Ha Ha

[Bailey_Texas in reply to BUZZ1397]

i was having nightly depression and just overall crappy nights. I just decided to get off all meds to see how i would do without them. It was bad so i restarted 1 at a time and axilect was the last one to restart and i notice my nights had turned around so no more azilect for me. Just luck that i found out. Btw any Doctor can give you a scrip for the meds it is up to him or her.

[BUZZ1397 in reply to Bailey_Texas]

Oh, any doctor. Now that flies in the face of what my internal medicine doctor said when I asked them to consider keeping me on my current PD Rxs in case I was unable to promptly sign on with another Neuro. The Internal medicine doctor said, "Sorry..., Azilect is a specialty medicine. You are going to need another neuro." I believe you Bailey because in looking for doctors in the neighborhood that are commonly treating patients for PD I found many who are not board certified Neurologists.

[Serenity_finaly-1]

Bailey, was wondering how much of your turn for the better is due to decreasing stress by quitting a stressful job?

[Bailey_Texas in reply to Serenity_finaly-1]

It does help. how much is hard to put a number on but i will about 10% is all i would say. The new meds and exercise are about equal for the rest.

[Isthistheone]

Finally made some progress on my sleep. Used to get maybe 2-3 hours sleep per night. My brain felt it was in a perpetual fog. Don't know what happened, but about 6-8 weeks ago my sleep steadily started improving. Before I would wake up 4+ times each night to urinate. Afterwards I'd toss and turn, couldn't get back to sleep. I drink plenty of water as I tend to produce kidney stones. I've had several kidney stones over the last 5-6 years. In just the last 3 weeks my neuro prescribed Amantadine. Also started taking mannitol at the same time. Can't believe what I'm feeling. Brain fog is gone and I'm getting 6+ hours of good sleep. My neuro always said I'd feel better once sleep apnea was under control.

[Greylayson in reply to Isthistheone]

Have you.heard that eating asparagus really helps with kidney function ? Try it