[Jorge]

Sorry, have not been online much in last few weeks to contribute on this topic. I still use Imbrija almost daily with little impact and am not a smoker. The alternative injectable Apopkyn seems to work well for those having problems inhaling

I am a military retiree and have only a small copay.

K

[Jorge]

My Inbrija is 42MG and I have used it for several years with no issues and good results. It is a complement to my Rytary dosage 5x/day.

It is a short term OFF time avoidance tool going right from inhaled lung to brain (vs gut to brain). It takes 5-10 min to kick in and has no limitation for food consumption unlike Rytary etc.  If you need to eat and get out the door in AM you can start with Inbrija.

Like anything else, individual results may vary.  I am a 10 year  Parky and occasionally find myself forgetting my pill schedule while working outside and Inbrija will keep me from fading while Rytary slowly kicks in.  Hope this helps.

[Jorge]

Agree with many of the same points so well articulated above.  Been doing RSB for 2 years now .  Every program seems to have some subtle differences.  We do about 15 minute for stretching, yoga, and pwr4life (sp?) exercises.  We then split up for the next 30 mins doing treadmill/bikes and core exercises, balance exercises, battle ropes, medicine ball, footwork with the remainder of the time(1.5 hrs total) spent on boxing on the heavy bag, speed bag and in the ring with a trainer throwing punches on command to hand targets.

Essential to the program is   INTENSITY (at whatever level that might be), learning to box, and exercising that voice box at every opportunity in the exercise counts etc.

NOTE:  I just saw in the National Parkinsons Foundation website/email that they are soliciting applications for community grant money that they will distribute.  Among the things they will pay for is instructor training for PD related programs.   Online application deadline is 31 Jan.  If you are trying to start up or grow your RSB program here is an avenue to possibly obtain funding  to get a trainer/instructor certified.

Movement is medicine– no doubt!

 

 

[Jorge]

I have participated in 3-4 trials over the last 3 years.  All have been non-invasive and relatively short term.  I am still independent and want to contribute where I can as a fairly new retiree.  Here in Las Vegas we are blessed with the Cleveland Clinic Lou Ruvo Center For Brain Health as well as some trial activity over at UNLV in the Kinesiology & Nutrition Sciences Department.   Obviously, anything out of town and longer term would be more demanding on PD patients with more advanced cases who need to travel with a caregiver.  I have not had one regret to date.

Pros   Making a contribution towards stopping the progression of PD    Meeting researchers/staff and learning alot about PD     Learning more about your own individual case (especially if you live in rural areas where access to an MDS is not always possible. )

Cons  The burdens of travel,  scheduling demands for those still working,  some folks get too anxious with test events like MRIs etc.   Out of pocket costs can be burdensome to some if the trial doesn’t cover a good percentage of travel costs for long distance events.

Personally I would confer with my MDS before volunteering for long term invasive tests.

I recommend trying at least one if able.