I'm worried that the Parkinson's medicine may not be working anymore.

medsec, many of the drugs have drowsiness as a side effect and the PD upends the sleep cycle.

Interesting about the TCM! Spouse developed a tremor after a stroke during triple bypass surgery in 1999. Later Neuro doc dx'd Parkinson's, which I disputed, but apparently maybe progressed to PD, Recently updated his PD med by another 1/2 tab; not sure there's any change. But this sleepiness has been in place for some time and only occasionally diminishes, not sure why.

We don't notice the changes that others who don't see them day in and day out do. I hope he dies at home and that this disease does not make him so bad that a nursing home is necessary. I want him here for personal reasons. I love him. But, also it would eat all of my retirement up in a couple of years.

Linda 22. You are SO funny. Yes, we have to watch these dogs...My dog has never eaten a pill even if you put it on the floor in front of her. She is a 3# Yorkie and it would probably kill her. Ropinerole has been SO good for my partner. The nurse was here today and she said she noticed some changes in my partner. In particular his weight. He lost 20# in three weeks. He sleeps a lot. I think we have to move to Texas. We now have MJ allowed here but we have to register our guns now.

No, this was just our experience but it may well have been unrelated to the meds and more related to the sudden inactivity due to the hernia. He's been golfing every week before the hernia, which slowed down his activity level daily.

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....

Linda22 What were his side affects on the Ropinerol? I am curious as I may be seeing side affects instead of something new..

So, Linda22 Are you saying that if I KNOW he has Parkinson, I should KNOW what they are giving him as it may Enhance the Parkinson? I would hope the neurologist will know what he can and cannot give him. But, I need all this input as I am his Voice..His Advocator. Know what I mean?

Oregon, my daughter said this is "twilighting", where you're awake yet not totally aware. Like they do when you go in for a colonoscopy. My husband went in for a hernia repair a couple years ago, they used a couple drugs to twilight him. His PD symptoms (we didn't even know he had PD at the time) started to kick in and within a few months, he was at the neurologist. I had a devil of a time finding out what he'd be given, only to learn neither drug was new to him. Not sure what happened, but things sure kicked in after the procedure. Everyone is different.

The Gabapentin is for his nerve pain. He suffers from pain in his hips and lower back. They are going to give him shots in his lower back. They are doing it at the Surgery Center. I am a bit concerned about what they use to put him out. It is not ALL THE WAY OUT, it is a drug that causes people not to remember what went on or something like that. I worry this could increase his memory loss. What are your thoughts on this?

Yes, these answers are very helpful. My Partner uses his hands while he is sleeping and his facial expressions - looking around with his eyes closed. This is all while he is sleeping in his recliner. He sleeps most of the day and all night. At first I thought it was depression, but he is just not depressed. He is smiling at me all the time and is happy. He uses Gabapentin and Ropinirol. The Gabapentin (300 mg) is only given at night (even tho Dr. said he can have it 4 times a day). It seems the Gabapentin puts him to sleep. Ropinirol is given twice a day. I worry about him getting bored with nothing to do but watch TV. Any suggestions? I get him in the car as often as I can and drive to the beach. But, he will fall asleep there also.

The ropinerole doesn't seem to be working well for my husband so I'm assuming the doc will change him to carbidopa/levidopa in July. Any feedback from you all about things to know and watch for would be appreciated.

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.

PD medications cause some of those symptoms, unfortunately. You could call the doctor's office and ask to talk to a nurse and say that the medication must be too strong. You said he had a hospital stay, which usually involves meds -- well Any medications have to be processed through the LIVER, which increases PD symptoms. My mother's PD was always worse after a hospital or nursing home stay. Then they abated as I got the medications cleared from her liver. Clear the liver toxicity and the PD symptoms will lessen. Infections will also cause hallucinations, how is his white blood cell count?
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.

Melrachels45, certainly not everyone who has Parkinson's develops dementia. But many do. The hallucinations and the inability to remember how to use a device he had used for many months suggest to me that it would be a good topic to discuss with the doctor. That appointment is in less than 2 weeks now, right? Go in with a list of questions and observations.

Dementia kind of goes with Parkinsons. My husband eats very well but sleeps a lot. I am not sure if that is normal.

Does this mean he has dementia too? He has Parkinsons.

Running in place is very typical of RBD behavior. The usual treatment for that is a drug called clonazapam (Klonoin). My husband took this for many years. If he took it, it worked. If he forgot a night he acted out his dreams. It is a very effective treatment for this disorder. (Some doctors try melatonin first. If that works, super, but if it doesn't then be glad there is another drug to try.)

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.

Yes he acts them out, last night it was as if hecwas running. His feet and legs were going so fast it woke me up. He is supposed to be using a Cpap but refuses to use it now and the last coupke of months he dud use it he got frustrated cos he couldn't remember how to put it on and i had to help him. He had used it over a year himself but no matter how many times he put it on those last 2 months he couldn't get it right. He also fought it a few times in his sleep.

He has vivid dreams ... does he act them out, flailing his arms and legs? A sleep disorder called RBD is associated with Parkinson's and with the dementia common to Parkinson's. There is a very effective treatment for RBD, and getting a more restful night's sleep can help other behaviors. Make notes about his night behavior to share with the doctor. Ask the doctor about RBD.

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.

This is his first dr visit, they diagnosed him in the hospital. He has had it for about 5 or 6 years,as far as we can tell. He was in rehab and had therapists at our home for a few weeks till they released him. He has had a swallow eval a few weeks ago. He just seemed to go downhill these last 2 weeks and I dont know why. We are doing his voice exercises and his boice is still getting lower and some of the things hes asking me are really off the wall. Im afraid hes going to get up and wander outside at night or something. Hes fine when hes good and awake but when he first wakes up and about an hour after he still got the dreams in his head. He sleeps around 16 hours a day.

Also, you can ask at the clinic for an earlier appointment if they have a cancellation. I know that getting ready on short notice isn't always feasible, but it is a possibility to consider.

Hang in there until July 6! The person best qualified to give you guidance is a doctor who has been following him. Is sleeping "a lot" 12 hours a day? 18? 21? Keep specific notes to share with the doctor.

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.