Parkinson’s unresponsive episodes

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.

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.

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?

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.

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.

No suggestions were given other than doing an EEG. Had to chase down the neurologist to get the results of the EEG. As a nurse, I am very frustrated with the delay in follow up, but I do not see any value in sending him to the hospital since it only seems to increase his confusion, paranoia, and hallucinations.

Hello @healthsurrogate and welcome to Mayo Clinic Connect. I can see this is a challenging decision given his stable vital signs and recovery after unresponsiveness. It seems as though having a baseline and information to compare the progression to may be helpful and also provide some insight as well.

@farmerleebs may be able to share additional information as her mother has experienced an unresponsive episode. Other members who have also mentioned unresponsive episodes include @bethv, @chuckcallahan, @mshoggie, @judithanne.

I am curious what instructions you were given or advice his doctor suggested?

My 67 year old brother was diagnosed with Parkinson’s disease 10 years ago. He recently started experiencing episodes of unresponsiveness that are increasing in frequency and duration. He has frequent hallucinations and experiences paranoia. He takes levadopa/carbidopa, Nuplazid, rivastigmine, Northera for labile blood pressure and meds for AFib, Type2 diabetes, and depression. He lives in a memory care unit due to his cognitive decline and has been sent to the hospital twice due to these episodes. The events that have been witnessed by staff start with fluttering eyelids and then no response to touch including sternal rubs or sound. His vital signs remain stable. He was admitted to the hospital the first time and all the tests were within normal limits. Upon return to his memory care unit, he had increased paranoia and hallucinations so his neurologist added Seroquel to his regime. The second time he was sent to the ER after an unwitnessed fall with a short period of unresponsiveness followed by extreme confusion. He was sent home within several hours with all tests normal. At a follow-up appointment, his neurologist did an EEG which revealed slowed brain activity but no signs of seizures. Several days ago he experienced another witnessed episode with fluttering eyelids and slumping in the recliner. Again his vital signs including blood sugar were within his normal limits. We opted to forgo a trip to the ER. This time his unresponsiveness lasted 45 minutes. Any ideas on how to handle these episodes? Should he go to the ER each time they happen?

My wife is 83 and has had Parkinson's for 14 years. She has had similar "non-responsive" episodes that look to me more like petit mal seizures. At first it was just a simple staring and then sleeping for an hour or 2 with no memory. The last episode she was putting a puzzle together and stopped moving. That lasted a few minutes. However, this time instead of just sleeping afterwards, she went totally unconscious, and would have fallen out of her chair if I had not caught her. She was unconscious for several minutes and woke up asking what she did. That evening, she could not eat her supper. She kept falling asleep. Eventually she went to bed and slept about 14 hours. Her neurologist put her on Kepra and weaned her off of Topamax. She could not tolerate the Kepra and we are now reversing the process to put her back on the Topamax where she was more functional. Originally, she was on the Topamax for Ocular Migraines. A combination of an ocular migraine and a bladder infection put her in the hospital and unresponsive for 3 days. She is showing signs of dementia and has hallucinations but they are not bothersome.
I, too, am open to suggestions and ideas.

I'm sorry to hear that your mom has unresponsive episodes too. It is scary to see a loved one like that. Is your mom on seroquel ("quitiopine")?