He is starting to shake more again, involuntary movements, also having hallucinations or vivid dreaming again. His voice is getting low again even with exercising, coughing when eating and still sleeping alot. His drs appointment is not till July 6th and I'm worried. Any advice??
Just an aside to point out where I'm coming from: TCM Traditional Chinese Medicine has an understanding of PD that provides some more insight into how PD develops, why those neurons die and why clumps form; as well as how to treat it. There are about fifteen or more people now who have completely reversed all 25 markers of PD and, in effect, became symptom-free. I attended the The National Parkinsons Summit where I met Harold S., fightingparkinsonsdrugfree. How it works is with Qigong (easy) exercises, the liver meridian is treated and the dopamine "faucet" is turned back on. There were other PD-recovered (symptoms reversed) people there at the annual summit, who used acoustic therapy to accomplish the same thing.
A terrific lady in the neuro's office managed to get him scheduled for a sleep study months earlier than I'd been able to so that's a good thing.
The Ropinerole ER was a godsend. It took a little time to find his needed dosage, but it did so much good. It was one pill in the AM, steadily releasing during the day. The insurance company didn't want to okay the ER (they prefer the much less $$ immediate release), but the doctor filled out the paperwork stating that the IR was not working for him. He has a formulary exception for the rop and we just renew it every year with the insurance company. The only side effects we saw were a bit of brain fog but it really helped with everything from masking (facial expressions), rigidity, micrographia, walking. It's been a good choice for him for the past couple years. The doctor said he'd eventually need to switch to the carbidopa/levidopa but the ropinerole has been a good choice until then. He has sleep issues, but those are just normal PD and restless leg issues - he did a sleep study last night and I suspect he has apnea. While he may not care for using a CPAP unit, that's a nice, non-side effect fix to the problem.
Because you need a smile.... I keep some of his meds in a bottle in my purse just in case. A couple weeks ago, my hyper chewer terrier got into the bottle. I rushed him to the vet and explained what I thought he'd eaten. I thought he'd at least bitten into a ropinerole. One of the bizarre side effects is compulsion to gamble. (We've never seen any of the bizarre side effects). I was told to watch the dog in case he had my credit card and was heading to the casino....
See All Answers