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??
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....
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.
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.
Sleep apnea is a different disorder, for which CPAP is often the treatment of choice. I use a CPAP myself. I cannot imagine my husband ever being able to use one when he had dementia. I urge you to take him back to the doctor who prescribed the CPAP and learn what the other treatment options are, now that your husband has dementia.
Of course you want to be cautious, and there are no guarantees, but generally wandering is associated with Alzheimer's Dementia. Not so much with Parkinson's Disease (PD), Parkinson's Disease with Dementia (PDD) or with Lewy Body Dementia (LBD).
Take lots of notes and be prepared to discuss your husband's behaviors and symptoms with the doctor in detail.
For eating, encourage him to sit up straight (not in a recliner or slumped in a soft chair). Keeping the chin down helps for some. Double swallowing is also helpful. Has he ever had a swallowing test by a speech therapist? They can often offer suggestions, depending what the observe happening in his throat.
I sure can understand your worry. I hope there are adjustments that can be made to meds and techniques you both can learn to keep him more comfortable.
This is a progressive disease that gets worse over time. Don't give up! Continue to work with his doctors to maintain whatever quality of life you can. Also recognize the nature of the disease.
Hugs to you.