Parkinson’s unresponsive episodes.

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.

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.

What is the name of these medications? My husband jerks alot in his sleep when he's dreaming, sometimes yells or laughs or just mumbles. I have sleep apnea and am in a deep sleep and I awake alot about 3 am in the morning, only to find him twitching in his sleep or talking . He has a Neurologist appt. next month BUT he doesn't want me going. Really hurts me, since I will be his Caregiver as it worsens UNLESS I die first. Can you help me ?

Hey all, my dad was diagnosed with parkinson's roughly 10 years ago, about a year ago he started having unresponsive episodes like those described in this thread.
During these episodes he has no response to external stimuli, and comes out of it without remembering anything and seems fine and back to baseline.
After many trips to the ER and seeing several neurologists who just upped his carbidopa/levodopa or told him to get better sleep we got a diagnosis. We were told that my dad likely has Lewy Body Dementia and that these episodes are not uncommon for people with progressing LBD. The neurologist just referred to them as "lewy body spells".
Unfortunately, there is no clear cut treatment for this and they only thing that can be done is make sure their vitals are normal and wait it out.
Some things that I noticed that might help anyone who is going through this:
- Carbidopa/Levodopa and other dopamine treatments can cause cognition or episodes to be much worse. We were told that minimum dose of carbidopa/levodopa to manage the parkinsons symptoms would help with the hallucinations/cognition
- Pramipexole would immediately cause my dad to have an episode.
- Some antipsychotics can cause severe adverse effects in people with LBD

Hello @jbakarich and welcome to the Parkinson's support group on Mayo Connect. The unresponsive episodes that you describe are definitely concerning for caregivers as you seem know.

On Connect there is a support group for caregivers of LBD patients. Here is the link to that discussion group:
https://connect.mayoclinic.org/discussion/lewy-body-dementia-at-age-51/
Also, here are some blogs related to LBD:
https://connect.mayoclinic.org/blog/dementia-hub/
How does your dad feel in general? Has his gait and speech been impaired greatly?

He has REM sleep disorder. He acts out his dreams. He doesn't go into normal REM sleep where most people are paralyzed while sleeping. My husband had it the 59 years we were married and it drove me nuts. He died with Parkinson's.

What was it that he died from ? I've read that usually Parkinson doesn't kill them but something else usually does first.

Do you have anyone in your support circle who can talk with him and let him know how hard this is for you. He's being selfish to exclude you. Maybe he's frightened and doesn't want to alarm you. Have you seen a counselor? Pastor?
Please don't heap the guilt on yourself. You're doing the best you can.

He died suddenly. I read that there is actually a cause called "Sudden Death in Parkinsons." His nose turned blue a few days before. I didn't recognise it as a symptom that his circulation was failing. He had gone to a Super Bowl party a few days before and was acting fine.(or as well as a person with bad Parkinson's can be.)

Hello @kilpike and welcome to the Parkinson's Support Group on Mayo Connect. What a challenging time this has been for both you and your wife. I really appreciate the attention you have given to her medical condition and the help you have been to her.

I can see that there have been many changes in her PD meds. Before you posted about it, I was not familiar with the medication, Duodopa, but in doing some research I see that is a pump that administers medication through a port. Is my understanding correct?

I really appreciate your post about the unresponsive episodes. You have provided a clear picture of what these episodes are like.

I would also encourage you to join the Caregivers' Support Group on Mayo Connect. I think you would feel a camaraderie, there, with other people like @IndianaScott, who are caring (or have cared) for ill family members. Here is the link to that support group,
--Caregivers
https://connect.mayoclinic.org/group/caregivers/
In reading the end of your post, it appears that her most difficult problem now is the pain due to dyskinesia. Is there anything that the doctors can do to relieve that pain?