For those who care for someone with Parkinson's disease
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By carol On 2017.08.20 17:48
I have posted here a few times and all of you are wonderful with responses and advice. My husband has had parkinsons for about 6 years now. The last year has been progressively worse and the last few months have been pure hell. He wakes me up at night because he doesn't like to be alone and twice in the last 6 months he has called an ambulance when he was home alone becuase I think he was having a panic attack. His main problem when he is not "feeling right" he describes as pins and needles all through his arms, hands, legs and feet. He said he feels like he has a sleeve on his arm at all times. Is this a normal parkinsons symptom? His anxiety has been really bad lately and he very rarely sleeps. He take at least 12 sinemet a day (that I know of) I sometimes think he takes more than that. He sets his alarm every night for every 2 hours to get up and take medicine. He claims if he doesn't when he wakes up it make matters so much worse. Does this all sound normal? The sleeping is really getting to me because I have to get up and go to work. The doctors are not much help. I swear everytime we go to the doctor he is totally normal. Also, travelling with him is now unreal. The last 2 trips we were on were awful. I told him I did't want to travel with him anymore for a while he now he thinks I don't love him anymore. I really am at my wits end and don't know where to turn. Sorry for my rambling.

By lurkingforacure On 2017.08.20 18:46
To me, it sounds like your husband is on way too much sinemet. Too much sinemet can have horrible side effects, as many here have posted. I'd get him an appointment with the doctor and see what his thoughts about the dosage are.

I can't sleep in the same room, much less bed, that my husband does. I had to give that up or I would have lost my mind years ago. I think most of us ultimately have to find another place to sleep in order to be able to function.

Like most caregivers, I had to take over the medicine because my husband was taking too much, missing doses, couldn't remember how much he took when, even when we have timers, he would still forget to take his dose. Even now, I can give him his pills and he will set them down and forget to take them, or drop one or more and not realize it, so I have to stand over him to be sure he takes them.

Even with my helping him take the right amount of meds on time, we no longer travel together either. We had two violent incidents last year, both of which occurred when we were out of town. Our kids were scared to death, my youngest could have been seriously hurt (or worse, my husband had a huge knife and chased him outside and around the house in the DARK, running no less-how he managed that when he struggles to walk across the room is beyond me). I have read many places that being in a different place can cause all kinds of issues like this, and while I realize my husband would never behave as he did but for the PD, I can't risk something like that happening again.

The other thing I found is that traveling with my husband is really hard on everyone, over and above the risk of a dangerous episode. My husband can't sit still for very long, has to use the restroom very frequently or risk an accident (and sometimes even when we stop he can't go, so we load back up and have to stop ten miles down the road because then he thinks he really does need to go....repeat over and over), doesn't want any music or anyone talking in the car because he wants "quiet time" (talking with your kids is one of the main reasons for a road trip....). He has a really hard time navigating around people, we hold up lines everywhere we go, if we have tickets to something it's a real challenge to be on time, and on and on. I know he can't help all of these things, but like someone said in another post, the trip becomes all about keeping him safe instead of the kids having a good time.

It sucks, because family vacations are no longer our entire family. I'm glad we took some trips all together before we got to this point, but sure wish we had taken more.

By VioletV On 2017.08.21 14:14
Also, Carol, are you or he making sure that he is not having protein with his Sinemet. When I met my husband he was taking Sinemet with Ensure -- making certain that the Sinemet had no effect at all.

By Elaine7 On 2017.08.25 13:36
I don't know if I should weigh in because my DH/PWP passed away on 7-30-17 at almost 70 years of age. But your 6 yr. journey caught my eye. My DH's journey was a little over 7 years. The fast progression of my DH's freezing up symptom had him taking 24 (25/100 mg) Sinemet per day before going to Rytary 2 years ago.

You said the last few months have been pure hell and asked if all this sounds normal. I empathize with you because we experienced all of the same symptoms. I retired 2 1/2 years ago because my DH was getting me up 8-12 times a night. Every time we/I brought up a symptom another med was prescribed. My DH was on a lot of med, so when he went into the hospital with anxiety, hallucinations, agitation, and loss of mobility, the Drs. said that they were out of options and recommended Clozaril. Lewy Body Dementia had been mentioned in the past, so when I asked if Clozaril could be given to persons with Lewy Body Dementia? They said yes. My DH did not have memory problems, but he had so many other symptoms. I feel like I failed him and yet the behaviors were more than I could handle, and he wanted me to take him to the hospital. So I totally understand when you say "I am really am at my wits end".

I know these symptoms are overwhelming for the PWP, but the behaviors the caregiver has to deal with are overwhelming too. Because each person has their own disease, and the side effects of the medication are as bad as the disease, the answers seem to elude everyone.

I just want you to know that you are not alone, but I do hope your DH's Drs can help you both.

By LOHENGR1N On 2017.08.26 17:00
Yes, anxiety and panic attacks are quite common in Parkinson's Disease. Also your husbands description of feeling like he had/has a sleeve on his arm is a good one. many, many times my arm feels like the skin is stiff. in the late 1990's I tried and failed 4 times to get to Independence Dog's Inc. in PA. I had my train ticket each time but just couldn't go. The lead trainer got quite mad at me because I couldn't get there. The last time I "chickened out" She was in a huff. About a month later she called me and told me she was sorry she got mad and asked what is it with you guys? With Parkinson's? When it comes time to go there we all were bailing out. She had in that month 5 other patients who could not get there! In fact one guy from California she glimpsed at the airport for a minute as he got off the plane and promptly boarded another plane back to California! So a big yes to panic/anxiety attacks.
Now for car trips. Welcome to our world I'll give you a peek in the dynamic's racing in our head. You already have a panic/anxiety attack trying to bust out. Our environment has shrunken to the size of the vehicle, we're probably seat belted in restricting our movement I know it is the law and safer but restriction is feeding into the rising crisis in our head. Add the radio one child likes the song yells turn it up a sibling doesn't yells no change the channel The kids are squabbling and bang, bang, bang our bladder is letting us know it has to be emptied! Only we get mixed signals because P.D. affects our autosumnal nervous system and the urge may be false, so first stop may be alright but by the third the grumbling begins. We can't trust the urge but no one wants to sit and pee themselves in front of their spouse or children so each false alarm raises the stress. Added to all this visual stimulation of passing scenery. They might not even realize a panic attack is coming they may only know something is getting wronger by the minute. My three children were young (eldest was 10 when I came down with P.D.) but if I explained what was going on or happening at times they did understand a bit. You can explain things age appropriate so they understand some of the things that crop up.

By LOHENGR1N On 2017.08.26 19:28
Elaine, my sincerest condolences to you and yours upon your loss.

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