Couldn't get moving the other day....
 

Usually I am pretty stiff as my Sinemet wears off.

For most PWP do fine overnight, but about six hours after my 10pm Sinemet/Comtan, I'm pretty stiff. Started adding a 5am dose, but by 4am I'm ready. Pills loaded in my easy to snap open container, water glass. Take pills, hit the bathroom, tap my phone (medication taken)... and lay back down for a while. If lucky I get some additional sleep.

Other day I just didn't release. Muscles stayed tight, and ouch it was hard just getting up and moving. One of my very off days, but wasn't sure what was different. Oh well, such is life.

That night, when I went to bed, pulled back the sheets so I could get in... sitting on the sheet was two tablets of Sinemet. I manage to drop them in the morning, and only took my Comtan (not much good without Sinemet) and my Synthroid. Oh fun... just thought it was funny. Often I think "I feel to great, maybe I really don't have PD..." Well, it more "remember those meds!". Grin.

Lots to be thankful for, and very grateful for Sinemet to keep me moving. :)

i'm taking only c/l after 12-13 years from diagnosis and can connect off periods to the usual suspects, eating too much protein and/or constipation which can slow stomach emptying, possibly needing more fluids. if i knowingly ate too much protein i'll take more C/L but i assume you do that. my understanding is there are enzymes in the stomach lining that convert the l-dopa into dopamine so the longer the C/L stays in your stomach the less dopamine gets to the brain and the more backed up you are the slower the stomach empties. having to get the L-DOPA into the blood stream via a small section of the small intestine and thru the BBB both via active transport is a full time job after your C/L "HONEYMOON" is over, seems we have evolved to tightly control how much dopamine gets manufactured in the brain. I have to assume patients on the DUOPA pump have less off time problems even though the L-DOPA still has to pass thru the small intestine so that may point to gastric emptying problems for unexpected off times. it will be nice when the inhalable l-dopa rescue drug gets approved along with the apomorphine oral strips, they'll be very pricey unfortunately if they do come to market. if you take one of those and don't turn on that tells you something past the stomach/small intestine is the problem.or still eating too much protein, i don't think protein interferes with agonists though.

just curious, you might have mentioned this on previous posts but how have you done on agonists and/or comtan? i'm about to try comtan.

I'm generally up around 3 a.m., hoping I'll be able to get back to sleep. As I'm often quite stiff, I go through the whole Dance for PD series of ballet plies. Must look strange to the dogs, but my muscles release and I'm usually able to get another 2-2 1/2 hours of shuteye. Whatever works....

The trials for both inhalable LD (Acorda cvt-301) and sublingual apomorphine (Cynapsus all-130277) are both moving along according to schedule. That being said, I still don't see them getting approvals and being marketed until sometime in 2018. Acorda is further along in their phases 3 trials, but doesn't anticipate completion until the beginning of 2017. Given the next steps for data analysis, filings and reviews, I would say another year for final approval. Cynapsus is a little further behind. However, they have a faster track approval process from the FDA, so they could possibly be out first. Both should ultimately get approval. Keeping in mind the long delays that Impax had with getting final approval for Rytary due to manufacturing problems (that process also needs FDA approval) Acorda's Civitas division which will do the drug and device production, has a state of the art facility. So, they should have no issues there. I don't know yet what Cynapsus intends to do about manufacturing the strips. Ultimately, adding both of theses rescue drugs to our medication arsenal will be very beneficial to help control serious off episodes.

suffice it to say it just takes too long to get even the most basic pd drug approved. i can see that inhaling anything has inherent risks and needs thorough testing but apomorphine i believe has been around as long as l-dopa so safety isn't an issue. they're running the apomorphine trial near me and they are still looking for volunteers i believe, tough to find pd volunteers. i didn't qualify because i'm still playing around with my meds and couldn't provide a dependable baseline.

as an aside, it's interesting that LCT in N.Z. think they can get their porcine cell implant approved in N.Z. by 2017 or 2018 if they're lucky. might just be hype or maybe i'm incorrect.

Yeah, it's crazy how long the timeline is, particularly when we're talking about drugs that have been around for decades. The good news is the safety profiles have been fabulous. Although the inhalation does appear riskier, so far it hasn't really caused many adverse events for the volunteers. A little bit of a cough when you first start it, but then everyone appears to get used to it. The inhaler is a little complicated and that might be an issue for someone in a bad off state. Certainly not as easy as a sublingual strip. Also, the seal packs for the capsules are a little bulky to carry around.

I think both drugs will get approval, but I have much more confidence long term in Acorda than Cynapsus. Acorda is a well capitalized biotech with a few successful MS drugs already on the market. They have a fabulous management team. Cynapsus is much smaller and everything hinges on this trial for their future.

By the way, I apologize TexasTom, if we have hijacked your thread and moved it away from your intentions. I do hope you are feeling better.

Gary

Thanks Gary. I do get absent minded and thought I was last on the forum a few days ago, and nearly two months have passed.

Doing very well thanks to the increased activity with Rock Steady Boxing. 3x a week, 90 minute classes. 15 minute stretch, 60 minutes intense workout, 15 minute stretch. Best part is actually sleep more than three hours a night. I've gotten five or six hours and felt great!

Tom

where is this available?
 

Can you tell us where you go for this? Is it a chain, available at a YMCA, etc.?

Hi Tom

Was wondering where you'd got to, so pleased you're doing well and thankyou for
the info on Boxing, amasing. I recently did the opposite and despite my best efforts managed to take 16mg of requip xl instead of 10mg, fortunately the xl takes a while to build up and the only effect was being a bit spaced.

Nigel

Hi Tom,

I have been considering Rock Steady in my area of Northern New Jersey and wondering if you (or anyone else) go to the sessions when you are ON or OFF and any thoughts on how you felt in each mode. Thanks and be well...

Eric

unfortunately no RSB IN THE UK

Eric,

They do an evaluation, so there are four levels. Idea is to have the work out match your abilities.

I was looking to increase my medication frequency/dosage but with the RSB boxing I am doing better. I take additional Sinemet before my 90 minute workout. Some days I could do the speed bag quite well, other times just it was not getting into a rhythm. Talked with my MDS (Movement Disorder Specialist) and agreed it was like I would burn up the dopamine too quickly, so adding a tablet before my 90 minute workout is great.

I still can not jump rope. I'm working on getting left hand to match right hand. We have a practice rope that is cut in half, and a tennis ball at the end. This gives you the feeling of the weight, but it is obvious my two sides have a hard time synching. So I get the cardio benefit of jumping rope, but don't trip on the rope.

One guy in our class fell twice during his evaluation attempting to jump rope. A month later not only is he good, but he did 50 jumps in a minute. His wife is really blown away with his improvement.

For me the best benefit is sleeping longer. Three hours a night was my normal routine, just couldn't sleep. So now I am up to five or six hours of sleep. Amazing how much better I feel.

Tom

Keep bugging every therapist, Doctor, Hospital, and everyone else you know.

It is new to Austin, and we really didn't think it would catch on. It just happened! I had worked out with my son at a local gym, but I made other people nervous with my blank face and shaking. Just life, but with one of my kids is was OK, but when you fall over the GYM owners wants to call 911 thinking you are having a heart attack! Add to slurring words when tired... The gym wasn't for me unless I had a personal trainer (too expensive).

So with a Gym with everyone having Parkinson's, it is great. You loose balance, and fall over and the floor is a heavy rubber mat! Everyone else in class just yells "You can do it, get up, keeping going". Suddenly I am not an outcast, but part of a larger group that gets it. That is huge!

There is a little humor is seeing an exercise class that fills up all the handicap parking spots. :)

CBS Morning News with Leslie Stahl:
https://www.youtube.com/watch?v=EfDHGbuvqiw

Things got a bit crazy. My wife had nerve damage, and despite her tiny size (5'6' 120#) was having a hard time walking. Disc completely gone in lower back, and ended up with L3-S1 Lumbar Fusion surgery. Complete with titanium hardware.

My Pulmonary Doc had me getting CT scans every six months due to a mass in my lungs, so he didn't like the growth rate (slow and steady) but PET scan said "not to worry". Biopsy confirmed Lung Cancer - Adenocarcinoma. Thankfully early detection, so off the Hospital and had part of my lung removed. Even the surgeon was surprised how good of shape I was in. I reviewed with everyone why my Parkinson medication was so critical "on time, every time, wake me up!". Took meds before surgery. They had them ready to go in recovery, and had me up walking around fifteen minutes later. I was discharged the next morning as I was up and walking every two hours all night. Looks like they got it early, still have follow up with Oncology.

It is more of a "meh, what's next?" I really shouldn't be this up beat, but every morning I get up is a victory.

Oh, I thought I would be in the Hospital Longer. No Wifi in the room, couldn't use a table to watch the rest of Foyle's War (Michael Kitchen and Honeysuckle Weeks). Nothing to do but wonder halls at night, and get pitched out the next day.

Sweet Jesus Tom !! When my wife got the big 'C' the other year I thought I must
have done something really bad in a previous life, It might be a good idea to warn people,as I do, not to stand next to you in thunderstorms.
Seriously Tom I'm humbled by your ability to remain up beat under circumstances which would crush most people, you're an inspiration !
I wish you and your wife the best of everything.

I don't think I could've resisted pretending to be a Zombie if they'd left me to wander the halls at night.
Here in the UK I know a bloke who had an operation for stomach cancer,kicked out after 3days with a bottle of morphine and instructions not to take too much at once. The bed must have been still warm for the next patient.

Tom,
Thanks for all the Rock Steady info. Now I need to get off my butt or the floor and push myself to get there. You have a great attitude in rough times and definitely inspirational. Thoughts are with you.

Eric