Parkinson’s unresponsive episodes

Diagnosed in September 1991 when almost 49, my wife began taking Sinemet and similar medications at the direction of several neurologists in several cities where I worked.
By September 2013 her PD was considered unmanageable using tablets so she was introduced to Apomorphine. When Apomorphine was found not to be effective enough she was transferred to Duodopa in April 2015. At present Duodopa is her only PD medication.
My wife has been unable to stand or walk for the last 6 years so is confined to a wheelchair during most of her waking hours.
Her first “Parkinson’s Unresponsive Episode” happened in May 2019 after I had placed her on her commode then found she was unresponsive, sitting upright, wide-eyed and staring straight ahead. I rang for an ambulance which took her to Emergency where blood, urine & CT tests revealed “nothing remarkable”. On following Emergency visits mild UTI’s were blamed for the unresponsiveness episodes and antibiotics were prescribed. The last time I sent her to Emergency the doctor on duty told me to “Wait a little longer before calling an ambulance” when I asked, “What should I do the next time this happens?” Several times she came out of the unresponsiveness by the time the ambulance arrived so the trip to Emergency was cancelled. I estimate each period of unresponsiveness lasted between 30 minutes and two hours. Last week she seemed to have three unresponsive periods each lasting up to 30 minutes over a period of four hours.
During her unresponsive periods her BP is normal, and an oximeter usually shows her oxygen level 95% or slightly less so it beeps at me.
I call my wife’s “episodes” the “Zombie Effect”, not a professional description perhaps but does convey what I observe quite aptly.
Also, my wife suffers considerable pain and discomfort in her legs from dyskinesia. I have found that laying her down on her back, or on her right side, or on her left side may often cause the dyskinesia to cease abruptly; unfortunately, not always though.

Hi, thank you so much for your response. His medication list and schedule is as follows:

5am: carbidopa-levodopa x2
Selegiline
Aspirin
Famotidine
Finasteride
Tamsulosin
*sulfamethoxazole (antibiotic)
9am: carbidopa-levodopa x2
Vitamins
Miralax
1pm: carbidopa-levodopa x2
5pm: carbidopa-levodopa x2
9pm: carbidopa-levo ER x1
Tamsulosin
Selegiline

As for PT, it has been challenging with Medicare because they were only approved for 6 weeks of PT/year so he really hasn’t had much. He has a trainer that comes to the house to help get him moving but he has still lost so much mobility. It has been challenging for him and my mother in law to make appointments as it is so tedious to get him places. I am hopeful that with palliative care on board, he will have access to weekly PT and OT at home. His last two hospital stays have been hard on him as he has been unable to leave his bed so even more weakness and decreased mobility. He also purchased a bike (maybe a year ago?) that is supposed to be helpful with PD and I think initially he was pretty faithful with it but I am unclear how much he is still using it.

Hello @tiffmiller and welcome to Mayo Clinic Connect. I'm glad that you found this discussion group. As you can see, others have also been concerned about their family members having this unresponsive episode. It is certainly frightening for the family and caregivers to watch this happening.

I would like to invite @bethv, @chuckcallahan @mshoggie @judithanne to join you in this discussion.

I'm glad to hear that your father-in-law will be receiving palliative care in the near future. This will certainly help him to get good care.

What type of treatment has he received since being diagnosed with PD. Is he taking carbidopa/levodopa? Has he had any physical therapy?

Good morning,

Wow. I just found this forum and it is so helpful with lots of great information. My father in law (71) has been having these unresponsive episodes - 20 minutes has been the longest recorded. Glassy eyed, inability to swallow, unresponsive, and some twitching in his legs. I initially thought it was seizures but everyone else believed it had to do with b/p. He saw a cardiologist who cleared him but his neurologist still believes his “episodes” have to do with low blood pressure. His pressures are all over the place. He has also had a bout of UTI sepsis that he has been hospitalized for twice in the last two weeks. My mother in law is his primary caregiver but Palliative Care is starting this week and I am hopeful that this will put everything under one umbrella so that we can get a clearer picture and he can begin to receive more thorough care. He was diagnosed as late stage PD in early 2020 (COVID made getting proper diagnosis and care almost impossible), has extremely limited mobility, muffled voice, extremely slow movements, and his posture is remarkably stooped which I believe is also typical in the later stages of PD. I really appreciate all the helpful info and this community.

Hello @bethv Many senior-aged people with PD seem to experience this type of "unresponsive episodes." @healthsurrogate has also experienced this with a loved one.

Have your mom's meds or living situation changed recently? Is she at all active physically?

I found the same thing when my brother started experiencing unresponsive episodes. By working with his neurologist and cardiologist we have seen a definite improvement. Only one brief episode since the medication changes and I wouldn’t classify it as the same type of episode since his vital signs remained stable and he continued to respond to commands. We had switched him to a new neurologist that was closer to his ALF, in hindsight this was a poor decision because his Leva/carbadopa was increased and now I realize that the increase was right before he started having increased hallucinations, delusions, and issues with his BP. By having him work with a PT he has maintained his mobility.

Thanks for the info. The more we can get out there better.
Peace
Larry H

Just ordered the Ahlskog and certainly hope it proves "great." Has anyone read Parkinson Pete on: Living and Dying with Parkinson's Disease"? Peter G. Beidiler. Well done insights into mostly living with PD; a vey busy guy indeed.

@bethv I know you posted this question years ago, but did you ever get a solution! This has happened to my 92 yo mom numerous times snd she is complete out “unresponsive to noxious stimuli” for up to 2 hours and nobody has a clue why. Vitals are always stable. She does have a Parkinson’s diagnosis snd I’m wondering if Lewy Body dementia…

I will second the Ahlskog book is great. My neurologist told me to get it and I am glad I have it.