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.

@judithanne

Hello everyone, My mom has these episodes too and I just came across this article. She has gone anywhere from 5 -45 minutes of unresponsiveness, and her Blood pressure is all over (high and low). After reading this article (Cognitive fluctuations in Parkinson’s disease dementia: blood pressure lability as an underlying mechanism), we are going to try this: basically, lying them flat and elevate the legs during the episode. The Physician who last saw her also suggested coban wraps (compression stockings) and had also heard of a pt who wore Nitroglycerin patch at night (removed early am) and this helped with the swings in blood pressure.

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Hello @judithanne and welcome to Mayo Connect.

You have posted about unresponsiveness that many have discussed on Connect's Parkinson's (PD) discussion group. I appreciate the information and I hope that it will be helpful to @mshoggie, @chuckcallahan, @bethv, and others. I tried to search for the article that you referred to but I was not able to find it. Could you possibly tell me the name of the website and also the name of the author of the case study?

Have you tried any of these methods to see if they help your mom? I would be interested in knowing which ones helped the most, Is it the compression stockings, the elevated legs or the Nitro patches?

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@judithanne

Hello everyone, My mom has these episodes too and I just came across this article. She has gone anywhere from 5 -45 minutes of unresponsiveness, and her Blood pressure is all over (high and low). After reading this article (Cognitive fluctuations in Parkinson’s disease dementia: blood pressure lability as an underlying mechanism), we are going to try this: basically, lying them flat and elevate the legs during the episode. The Physician who last saw her also suggested coban wraps (compression stockings) and had also heard of a pt who wore Nitroglycerin patch at night (removed early am) and this helped with the swings in blood pressure.

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Thank you very much. I will take a look at the article.

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@judithanne

Hi, I have also posted below, but in case you don't see it – look for this article (CASE REPORT) "Cognitive fluctuations in Parkinson’s disease dementia: blood pressure lability as an underlying mechanism". We are going to try this: basically, lying them flat and elevate the legs during the episode.

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@judithanne, You will be able to post links in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.

– Cognitive fluctuations in Parkinson’s disease dementia: blood pressure liability as an underlying mechanism published in the Journal of Clinical Movement Disorders https://clinicalmovementdisorders.biomedcentral.com/articles/10.1186/s40734-018-0068-4

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To all Parkinson's members:
This post has been removed because it contravened the Terms of Use https://connect.mayoclinic.org/terms-of-use/ Commercial posts and advertisements for businesses are not permitted.

Further investigation revealed that this member was impersonating a patient who had discovered cure with herbal supplements. The information was medically inaccurate.

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Hi! What great news that you are doing so well! Does your neurologist know you are using the herbal supplement? What does he/she think? Are you taking other PD meds? I must admit that I am skeptical about natural remedies, but certainly not closed minded. Would be WONDERFUL if something natural worked!!! Your response would be much appreciated. Thx.

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@susan62

Hi! What great news that you are doing so well! Does your neurologist know you are using the herbal supplement? What does he/she think? Are you taking other PD meds? I must admit that I am skeptical about natural remedies, but certainly not closed minded. Would be WONDERFUL if something natural worked!!! Your response would be much appreciated. Thx.

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Parkinson's disease relief:
Diagnosed
2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms…
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever…".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:
"parkinson's thiamine hcl"
https://www.facebook.com/groups/232260083958797 ; …
Parkinson's Relief, Questions and Answers
 
Guide:
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
5. Website: Dr Costantini's guidelines on Parkinson
https://stopparkinson.org/en/table-of-content/

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@susan62

Hi! What great news that you are doing so well! Does your neurologist know you are using the herbal supplement? What does he/she think? Are you taking other PD meds? I must admit that I am skeptical about natural remedies, but certainly not closed minded. Would be WONDERFUL if something natural worked!!! Your response would be much appreciated. Thx.

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Hi @susan62, you were right to be skeptical about the post above claiming cure with natural remedies. A member reported the post. Upon investigation, it was discovered that this member was impersonating a patient who had discovered cure with herbal supplements. The information was medically inaccurate. Furthermore, commercial posts and advertisements are not permitted on Connect.

Thank you for your diligence is seeking reliable information.

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Thx for your input Colleen!

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@susan62

Thx for your input Colleen!

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Hi, @susan62 – wondering how things are going with your Parkinson's symptoms and the low-grade nausea you mentioned?

@mshoggie – is your mom still experiencing the non-responsive episodes?

@judithanne – also wanted to check in with you about your mom and her unresponsive episodes. You talked about some new techniques suggested to you for managing it . If she's experienced another one, how are those working for her?

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Hi Lisa. Thx for asking. Things are going pretty well. I really shouldn’t have anything to complain about. My neurologist lowered my dose of Carbidopa/Levodopa down to 1 pill three times daily instead of the gradual increase to 2 pills three times a day. After doing this I felt MUCH better. I sometimes have a little nausea with the morning dose, but a cracker, a bit of bread or a few pretzels and a couple sips of ginger ale does the trick. My other symptoms have pretty much disappeared. Occasionally I will get a little low grade pain in my right arm, but it usually goes away after a short period of time. NOTHING like the pain I was having when first diagnosed. That had been by far the WORSE thing about my PD. I am continually grateful to God that things are so good. There are so many others who, by far, have it so much worse.

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@susan62

Hi Lisa. Thx for asking. Things are going pretty well. I really shouldn’t have anything to complain about. My neurologist lowered my dose of Carbidopa/Levodopa down to 1 pill three times daily instead of the gradual increase to 2 pills three times a day. After doing this I felt MUCH better. I sometimes have a little nausea with the morning dose, but a cracker, a bit of bread or a few pretzels and a couple sips of ginger ale does the trick. My other symptoms have pretty much disappeared. Occasionally I will get a little low grade pain in my right arm, but it usually goes away after a short period of time. NOTHING like the pain I was having when first diagnosed. That had been by far the WORSE thing about my PD. I am continually grateful to God that things are so good. There are so many others who, by far, have it so much worse.

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@susan62 Hi Susan: I know that your post was directed to @lisalucier but I just wanted to let you know how pleased I am that you are doing so well. I'm guessing that you must still be exercising faithfully since that makeS a real difference in the symptoms of PD.

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You bet Teresa!! I walk at least 5 days a week 3 to sometimes 6 miles. Most often around 4 1/2. Always have and plan to keep it up until I can’t. Great for my body as well as for my sense of well-being. I appreciate your support.

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Buenos días. MI nombre es Justiniano Murphy, tengo 55 años y radico en LIma Perú. En mi caso fui diagnosticado en 2017 y atendido excelentemente por el Doctor Rodolfo Savica en Rochester, iniciando con 1, 2 y luego tres SInemet (carbidopa levodopa) 100/25 al día. EL problema que tengo ahora son los diarios ataques de ansiedad que no responden normalmente a los ansiolíticos deteriorado sostenidamente mi calidad de vida, por lo que como último recurso he optado hace dos días a elevar mi dosis de Sinemet. 100/25 de 9 a 12 pastillas diarias. Espero que eso me ayude, por que no me ha sido posible comunicarme con mi Doctor ni obtener respuesta y estoy desesperado.

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@susan62

You bet Teresa!! I walk at least 5 days a week 3 to sometimes 6 miles. Most often around 4 1/2. Always have and plan to keep it up until I can’t. Great for my body as well as for my sense of well-being. I appreciate your support.

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That is great to hear, @susan62! There was a PT who often said that PD patients who exercise on a regular basis have much less disability than those who don't have an exercise program. So, we need to all keep moving….

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@justiniano

Buenos días. MI nombre es Justiniano Murphy, tengo 55 años y radico en LIma Perú. En mi caso fui diagnosticado en 2017 y atendido excelentemente por el Doctor Rodolfo Savica en Rochester, iniciando con 1, 2 y luego tres SInemet (carbidopa levodopa) 100/25 al día. EL problema que tengo ahora son los diarios ataques de ansiedad que no responden normalmente a los ansiolíticos deteriorado sostenidamente mi calidad de vida, por lo que como último recurso he optado hace dos días a elevar mi dosis de Sinemet. 100/25 de 9 a 12 pastillas diarias. Espero que eso me ayude, por que no me ha sido posible comunicarme con mi Doctor ni obtener respuesta y estoy desesperado.

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Buenos días y bienvenido @justiniano. I used Google Translate (https://translate.google.com/) to translate your message from Spanish to English.
"Good Morning. My name is Justiniano Murphy, I am 55 years old and I live in LIma Perú. In my case I was diagnosed in 2017 and treated excellently by Dr. Rodolfo Savica in Rochester, starting with 1, 2 and then three SInemet (carbidopa levodopa) 100/25 a day. The problem that I have now are the daily attacks of anxiety that do not respond normally to the anxiolytics. My quality of life has deteriorated steadily, so as a last resort I chose two days ago to raise my dose of Sinemet. 100/25 from 9 to 12 pills daily. I hope that helps me, because I have not been able to communicate with my Doctor or get an answer and I am desperate."

I hope you'll use Google translate to interpret responses from the community here on Mayo Clinic Connect.
Espero que use el traductor de Google para interpretar las respuestas de la comunidad aquí en Mayo Clinic Connect.

Have you tried to get in contact with your Mayo doctor through the patient portal? Here is the link to create an account if you haven't already https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

I understand that you are desperate, but it is best to have the guidance of a doctor when changing medication doses. Do you also take anti-anxiety medication?

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