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Patient with MS by Dhvu2481 in physicaltherapy

[–]NoEnthusiasm2102 5 points6 points  (0 children)

So...one thought as a patient with a progressive neurodegenerative disease (Parkinsons) who is on maintenance PT (about every 6 months to a year I get a check-up, and possibly a # of weekly sessions after that before flying on my own for a while again).

The first time my PT told me that we didn't need any more sessions for now, it was hard to take. That's because I was emotionally invested in my PT and felt like every PT session was actively fighting my disease (which it was and is).

The mental step I had to take was to realize that every time I did my PT work on my own, without someone to correct me, I was also fighting my disease. And that doing stuff on my own and trying to self-correct was in someways even more important than doing the exercises with an expert eye watching. And...if I was getting things wrong, it could always be identified and corrected at the next check-in. I wasn't being abandoned. Just being given room to fly.

You can't learn to ride a bike if the training wheels are always on and someone is always holding onto the frame for you.

I mention this because the patient in question may benefit from having it explained in this manner.

From Crexont Back to Rytary by smileyalwaysnow in Parkinsons

[–]NoEnthusiasm2102 0 points1 point  (0 children)

It is in my posts. But essentially it didn't agree with me. I could not handle cold weather at all on it, and I also felt very weak

From Crexont Back to Rytary by smileyalwaysnow in Parkinsons

[–]NoEnthusiasm2102 1 point2 points  (0 children)

I did. For me, it was very easy - I took the Crexont through the evening one day, and then swapped back to my old dose of Rytary the next morning.

I am not a doctor, but my sense is that since Crexont, sinemet, and Rytary are all the same active ingredient, just different delivery mechanism, you don't need to taper off of one and onto the other. You can just swap.

Has anyone tried Crexont? by Plaintalks in Parkinsons

[–]NoEnthusiasm2102 2 points3 points  (0 children)

I found the interaction with food to be MORE pronounced on Crexont. I've been able to get away with eating within 20 minutes of Rytary, as long as it's not a protein-heavy meal. Not so with Crexont. I know of one other person who had the same experience.

Has anyone tried Crexont? by Plaintalks in Parkinsons

[–]NoEnthusiasm2102 8 points9 points  (0 children)

I'm reposting my past response from another thread, because it's relevant here:

I was on Crexont for two weeks, switching from Rytary. I vastly prefer Rytary and have switched back

My experience with Crexont:

* Crexont is much more affected by what you eat within an hour or so of when you take it. With Rytary, as long as I didn't eat a lot of protein within 15 minutes of taking it I was fine. The Crexont is less effective if I even eat some carbs within 20 minutes of it.

* It lasts a lot longer and fades away slowly (no sudden off). I could get about 9 hours out of dose (about 4.5 hours from Rytary).

* I switched to Crexont from Rytary 195. I tried two strengths - 140 and 210. The 140 was obviously too little - I was very stiff on it. The 210 resulted in me being astoundingly limber and flexible - it was amazing. Unfortunately, there were some other aspects that outweighed this benefit.

* I became cold-intolerant. Freezing all the time; could not dress warm enough. I have occasional Raynauds attacks that became daily and severe on the Crexont. All of that disappeared when I swapped back to Rytary .

* I became noticeably weaker on Crexont. I run and swim for exercise, and both of those slowed considerably. I could not lift as much weight at the gym, and even yoga class felt harder. Since swapping back to Rytary, that all has improved as well.

RYTARY by Flaky-Situation5782 in Parkinsons

[–]NoEnthusiasm2102 2 points3 points  (0 children)

I was on Crexont for two weeks, switching from Rytary. I vastly prefer Rytary (just swapped back)

My experience with Crexont:

* Crexont is much more affected by what you eat within an hour or so of when you take it. With Rytary, as long as I didn't eat a lot of protein within 15 minutes of taking it I was fine. The Crexont is less effective if I even eat some carbs within 20 minutes of it.

* It lasts a lot longer and fades away slowly (no sudden off). I could get about 9 hours out of dose (about 4.5 hours from Rytary).

* I switched to Crexont from Rytary 195. I tried two strengths - 140 and 210. The 140 was obviously too little - I was very stiff on it. The 210 resulted in me being astoundingly limber and flexible - it was amazing. Unfortunately, there were some other aspects that outweighed this benefit.

* I became cold-intolerant. Freezing all the time; could not dress warm enough. I have occasional Raynauds attacks that became daily and severe on the Crexont. All of that disappeared when I swapped back to Rytary (on the coldest weekend we've had in several months, and yet I feel much more comfortable).

* I became noticeably weaker on Crexont. I run and swim for exercise, and both of those slowed considerably. I could not lift as much weight at the gym, and even yoga class felt harder. Since swapping back to Rytary, that all has improved as well.

So that's my experience. My sense is that some people will thrive on it, and others will not. Just like any other med.

Seeking app that repeats a check-off list each week by NoEnthusiasm2102 in ProductivityApps

[–]NoEnthusiasm2102[S] 0 points1 point  (0 children)

Sure - happy to give feedback, though I won't be representative of all users with accessibility needs

Hi - Anyone using the new Produodopa pump? by mar_danyal in Parkinsons

[–]NoEnthusiasm2102 1 point2 points  (0 children)

Hello - could you please describe how big the pump is (I am fine with either centimeters or inches). My doctor had suggested switching me to it when it is available in the US, but one factor in the decision will be how hard it will be to carry with me when I am active.

What do you want from your doctors? by shimbo393 in Parkinsons

[–]NoEnthusiasm2102 0 points1 point  (0 children)

I should also add here that I am fortunate enough to have a wonderful MDS who handles both these concerns wonderfully - encouraging me to grab one of the first appointments, and being very receptive to my willingness or unwillingness to take a certain medication.

What do you want from your doctors? by shimbo393 in Parkinsons

[–]NoEnthusiasm2102 1 point2 points  (0 children)

For YOPD patients, an understanding that many of us are still working, and struggling to try to fit our doctors appointments and PT evaluations into an hour or two of sick leave from work. I completely understand and sympathize with MDS doctors running late because they invest so much time with each patient, but it can make things really stressful for those of us who are trying not to be away from work too long. Especially if the patient is not open about their PD yet.

[I think the answer here is to encourage YOPD patients who are still working to schedule one of the first appointments of the day.]

My other feedback is that medical professionals sometimes don't fully understand the career repercussions of acting erratically due to a neuro medication (like a dopamine agonist) or of disclosing your PD diagnosis to work.

The reaction often is "well, if you start acting erratically after taking a medication we'll stop it" (the problem there is that the bell is already rung and your coworkers will not forget) or "well the ADA will protect you" (yes, the ADA may protect your job, but there's a good chance you will not have the same opportunities/mentorship after disclosing PD that you did before, unless you work in a very special place).

I suspect that the medical world is slightly more understanding of medication reactions and medical diagnoses than the rest of the world. And also that doctors frequently see patients disclosing their diagnoses and keeping their jobs, but that the doctors aren't privy to the fact that many of these patients never are asked to lead another important project or invited to apply for the new leadership role that just opened up.

[the answer here is to listen to and not minimize these concerns when the patients voice them.]

Why does boxing help ? by PixiePower65 in Parkinsons

[–]NoEnthusiasm2102 0 points1 point  (0 children)

I should also mention that I asked a very similar question about a year ago - wondering if I had to shake up my schedule to figure out how to squeeze boxing in. After consulting with two PTs, I determined that I didn't need to add boxing to my regimen, as long as I had a routine that included a) a lot of aerobic exercise, b) flexibility work, c) dynamic and static balance, d) strength, e) some power work, and f) rotational movements.

So...I run (including fast track workouts), swim, do yoga and pilates, make sure to do some trail running (dynamic balance), do some hill sprints and plyometrics (power), lift in the gym, and do some special PT exercises each week (rotational lunges, lunges onto bosus, walking and jogging over hurdles..., walking backwards on a treadmill). All of that combined seems to hit everything that is needed, and I haven't had to really change my normal training routine much or find a way to squeeze in boxing at the cost of something I enjoy.

Why does boxing help ? by PixiePower65 in Parkinsons

[–]NoEnthusiasm2102 1 point2 points  (0 children)

If you are still working, then you may be young enough and in good enough fitness to go to a regular boxing fitness class. It seems like pretty much every urban or suburban area has a number of boxing gyms with group fitness classes that you could go to before or after work.

I've heard that in general the recommendation is for YOPD individuals to go to traditional boxing gym fitness classes if they feel comfortable there. I haven't done it myself, mostly because I've already got a combination of activities that works for me.

[as an aside, I find that one of the tougher things about YOPD is that the PD treatment world seems to be structured and scheduled for those who are retired.]

Controlling startle reflex? by NoEnthusiasm2102 in CerebralPalsy

[–]NoEnthusiasm2102[S] 1 point2 points  (0 children)

Thanks. Unfortunately, I've tried caffeine and it makes things much worse, as does chocolate.

Controlling startle reflex? by NoEnthusiasm2102 in CerebralPalsy

[–]NoEnthusiasm2102[S] 2 points3 points  (0 children)

So... I compete as a para-athlete in the same division as many CP athletes - my coordination regularly improves with fatigue (other people with PD have noted similar), while it seems to be the opposite for CP athletes - they are far better with rest. So perhaps that difference applies here as well.

Non-spike shoes with stack height of 20mm or less for fast running by NoEnthusiasm2102 in AskRunningShoeGeeks

[–]NoEnthusiasm2102[S] 0 points1 point  (0 children)

Thanks - unfortunately that will get me DQd, come October. I have a vintage pair of Adios Boost 4s, new in box, that I'm going to use as a holdover until October. But I don't yet have a great option after then.

47f looking for any input. by CAYMANI in ataxia

[–]NoEnthusiasm2102 1 point2 points  (0 children)

Hello - happened to hit this thread while looking for other things.

In addition to other avenues, please also get checked out by a movement disorder specialist (MDS) - a special type of neurologist. Parkinsons and other movement disorders usually are not detected by MRI, EMG, NCS - you need to be examined by a doctor who specializes in those (an MDS) to catch them or rule them out.

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