Parkinson’s unresponsive episodes.

Posted by bethv @bethv, Sep 16, 2018

My father, 93 years old, is suffering these unresponsive episodes, not to be confused with “freezing” of gait. The episode can last two hours and we think might be related to dehydration. Why can’t I find any mention of this in any web sites that describe Parkinson’s? Only in caregiver sites have I found any information. Is no one studying this phenomenon? There may be some connection here that needs investigation.

Interested in more discussions like this? Go to the Parkinson's Disease group.

Thank you for sharing your experience with your husband. He’s had a personal trainer for the past year which keeps him active. He doesn’t have many issues with mobility. I took him back to his previous neurologist and she believes it is related to his blood pressure so she has started slowly decreasing his levadopa/carbidopa. I also took him to his cardiologist and he switched the timing of his blood pressure medications and increased his morning and afternoon Northera doses. He hasn’t had any recent episodes. Now if I can just get the memory unit to give him more fluids throughout the day. Unfortunately he doesn’t ask and they don’t offer.

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@beloved1

My husband also has very similar episodes of unresponsiveness. It is usually very near his next scheduled dose of carb/levo. I have found that administration of Parcopa, (an orally dissolving form of carb/levo) shortens the episodes miraculously when given with orange juice. His blood pressure during his episodes is low, 80’s/30’s. It also helps to lay him flat, & elevate his feet. He is up and going within 15 minutes, alert, and ready to go. His medications are Carb/levo 25/100 q 3hrs while awake, rotigitine 2mg patch daily, aricept 15 mg in divided doses of 10& 5 given with 10 mg of memantine twice a day in the early AM & after lunch.
We have also found that 20-30 minutes with a personal trainer on an ICare elliptical 2-3 times a week is very beneficial. We recently have added a 30 minute Bowen’s massage therapy twice a week which seem to help with mobility issues. His unresponsive episodes typically increase during episodes of Any physical stress due to constipation or infections ( ie. UTI, nephritis) or emotional stress due to upsetting life events. His diagnosis was LBD with Parkinsonism in 2012. He has no other chronic diseases.

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Hello @beloved1 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share what you have learned and what you are doing for your husband for his episodes of unresponsiveness.

Can you share more about the elliptical regimen and how that has been helping him?

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@amandajro

Hello @beloved1 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share what you have learned and what you are doing for your husband for his episodes of unresponsiveness.

Can you share more about the elliptical regimen and how that has been helping him?

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The elliptical I am speaking of is a special piece of proprietary equipment used by Madonna rehabilitation here in Lincoln Nebraska. The therapy department had it designed for people with head injuries. The physical therapist used it to have the synchrony of movement for his arms and legs. The machine can be set for speed, stride & intensity. Because of the LBD and varying degree of unpredictable weakness he was unable to use a regular elliptical. The trainer sets the machine for Dave to” walk big” . His feet are strapped in. He has a personal trainer or a physical therapist monitoring and watching him. They help him sit on a bench that’s built into the machine when he needs a rest. The exercise helps a lot of things, endurance, strength training & rhythmic movement that helps retrain the brain through big movements.? Having a trainer takes the pressure off me to motivate him. It’s some thing he very much looks forward to twice a week. When he began physical therapy with this machine a year ago,! he was only able to do five minutes at a time. Within four months he was able to handle 20 to 30 minutes on a routine basis. He also went from using a wheelchair to being ambulatory. He sleeps better. He Thinks better and is experiencing What I believe is A delay in progression of his LBD. We no longer have what used to be hours of laying on the floor because he was unable to move or get up. Falls are far fewer, and he is able to be helped up with in minutes after experiencing a freeze and collapse. He has also been able to enjoy a 20 minute walk on a walking trail in the couple of weeks. We had tried respite caregiving before therapy, but found the money was better spent on helping my husband get the therapy that helps him function better. He is also not having to use as much carb/levo as he did before beginning the therapy in February of 2020. He takes 12 pills instead of 16 per 24 hours. (2 tabs every 3-4 hours during the day while awake.) so 25% reduction in carb / levo which means fewer episodes of hallucinations as well. It has been a very encouraging year overall. We still had off days, but the possibility of a better tomorrow gives hope.
Dave had a very severe episode of nephritis this April which robbed him of everything he had accomplished in the past year. However, after getting the infection under control, he was able to go home instead of a skilled care facility. He is back in Physical Therapy and improving with each visit. He is almost back to his baseline before he became ill. I am so thankful I did not give up his care to an institution. He is far better cared for here at home with outpatient trips for quality physical therapy twice a week. That week in the hospital was a grim lesson in the pitfalls of institutional care. There is no place like home.

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Carbidopa levodopa is the premier, go-to drug. Instant release is preferred.

You may need two and 1/2 tablets in a single dose. Three tablets even. Three and one half tablets being the limit of effective treatment. Any number of total daily doses. One hour, three, four hours apart.

I was paralyzed until I moved my dose up to two tablets in a single dose, four hours apart day and night.

Required Reading Book List for Advocates of their own health.

Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Dr. Eric Ahlskog,
Chair of Movement Disorders
Mayo Clinic, thirty-years experience.

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@royprop

Carbidopa levodopa is the premier, go-to drug. Instant release is preferred.

You may need two and 1/2 tablets in a single dose. Three tablets even. Three and one half tablets being the limit of effective treatment. Any number of total daily doses. One hour, three, four hours apart.

I was paralyzed until I moved my dose up to two tablets in a single dose, four hours apart day and night.

Required Reading Book List for Advocates of their own health.

Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Dr. Eric Ahlskog,
Chair of Movement Disorders
Mayo Clinic, thirty-years experience.

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

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@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…

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@larryh123

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

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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.

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@hjscheib

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.

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

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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.

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@nomsdicnadeen

@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…

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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?

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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.

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@tiffmiller

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.

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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?

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