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Parkinson’s unresponsive episodes.

Parkinson's Disease | Last Active: Jun 7 6:48am | Replies (76)

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@kilpike

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.

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Replies to "Diagnosed in September 1991 when almost 49, my wife began taking Sinemet and similar medications at..."

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?