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Topic Parkinson's and sleeplesness Go to previous topic Go to next topic Go to higher level

By dbacksgirl On 2011.09.02 01:50
I'm new to discussion forums so please bear with me. I'm not only looking for information, but probably just need to vent. My mom was diagnosed with Parkinson's a little over a year ago. Her condition is described as end-stage. Her symptoms were thought originally to be the result of a stroke, but after additional testing we were told it's PD. I still don't think they've called it right, but there is definitely something neurological going on. She is under hospice care at home. The progression of the PD has been fast - The past year and a half has taken its toll on my mom and our family. I'm so angry that this disease has robbed my very beautiful, vibrant mom of her independence, sense of humor, and in almost every way, her dignity. This poor woman can't even take care of her most basic needs. Bathing, toileting, feeding, drinking, the stuff we take for granted, is all done for her by my dad, my sister or me. We are very lucky that we have also have two wonderful in-home caregivers who love my mom as much as we do. Mom's cognitive level is severely diminished. She knows who we are, but has no idea about anything going on around her. What we are now trying to deal with is mom no longer sleeps through the night. She will sleep for a 1/2 hour then tell us she wants to get up. We get her up, she wants to lie back down. We'll put her in her at-home hospital bed when she says she wants to go to bed, but then she wants to go back out to the couch. When she's on the couch, she will sit up, lie down, sit up, lie down. She gets visibly agitated if we tell her to just relax and try to rest. We are at a loss as to what to do. Sedatives are not an option, she doesn't tolerate any medications anymore. She's got to be exhausted and I believe she's suffering. Is this sundowner's syndrome? the parkinson's? Has anyone encountered this, and if so, is there anything we can try to ease her restlesness? We've asked the doctor, but of course, out comes the prescription pad - no other suggestions. If after reading this anyone has any ideas, we would love to hear them.

By karolinakitty On 2011.09.02 08:48
First, welcome to the forum.

Is it Parkinson's, probably a secondary parkinson's brought on by the stroke, it happens and there are cases of it. You don't mention what drugs she is on, but noted she is intolerant to a lot. This could be a clue to her agitation. According to what you wrote she could have dementia, with her PD, and the meds are all messed up. End stage? I don't believe in the stages but, it could be if she has hospice care.
If it is sundowning here are some things that, if applied could help with it:
Plan for activities and exposure to light during the day to encourage nighttime sleepiness.
Limit caffeine and sugar to morning hours.
Serve dinner early and offer a light snack before bedtime.
Keep a night light on to reduce agitation that occurs when surroundings are dark or unfamiliar.
In a strange or unfamiliar setting such as a hospital, bring familiar items such as photographs or a radio from home.

So sad it is that your mother is being taken over so quickly by this disease but i know there are many here who have been dealing with your same issues for 5 or more years.
I will say this...if your mother is over the age of 65, a lot of regular doctors will pass them off with drugs to just maintain them. Shoot, we've had the experience of that and we are in our 50's. Finding a good doc in our walk is half the battle. Maybe a change in neuros and adjustment in meds would be the ticket here. Try a movement doctor, most teaching hospitals have them. Google it in your area and see what you find.
Sleeplessness and restlessness and even narcolepsy are very common with PD. Mine only gets several hours of sleep a night and fights the narcolepsy all day. What you maybe don't understand about PD is that the body is in constant motion inside, and getting "comfortable" is one of the hardest things. That is why she is up and down, sitting and laying, the body is not "resting" and quite frankly getting situated is a fight in itself. The agitation could come from the dementia OR it could be simple frustration at the fact that she can not get comfortable. I am sure you have had restless nights yourself and know the up/down routine. It can be exaggerated with the PD.

Hope i wasn't too blunt, but i am pretty forward and believe in positive action when fighting this.

Get some new doctor... it may be most of the battle here. Maybe just getting her meds turned around might be the key.
Stages are just a guideline and not exact, as i've said on here many times, mine should have died a while back if I followed them.
Hopefully since you are able to have so much help you can adjust "caregiver" roles so not everyone is as tired like there is only one caregiver.

By susger8 On 2011.09.02 09:45
Whatever the reason, it's very common. Some people find that taking Seroquel before bed helps with nighttime nightmares and awakenings. It made my dad very groggy in the daytime, though. We've done pretty well with two 3 mg tablets of melatonin at bedtime. I think some people on this forum have used up to 3 tablets.

Sue

By dbacksgirl On 2011.09.02 12:01
I can't believe you both answered so quickly! Thank you for taking the time to share your ideas. I will talk to my family. We've been to so many different doctors - don't have alot of faith in the medical profession anymore. Mom almost died when they prescribed the dissolvable sinemet - we tried that because she can no longer swallow pills. Her throat and tongue swelled so severely - it was one of the scariest things we've ever seen.
I'm going over there today - going to try to stay positive. Thank you again for your thoughts - I actually don't feel so alone today.

By jebspi On 2011.09.02 15:11
We have just been coping with this problem. Sit on the sofa, get up, walk around, come back, get up (always with help for the ups and downs) and some nights with a need to talk about the dreams in the middle of the night even though he has almost no language, get up, don't have to go to the bathroom, walk back and forth, etc. I was getting so tired from lack of sleep as I was more awake than my husband, and had trouble going back to sleep before we just got up again! However, last night I thought to give him GABA and other than two trips to the bathroom, he had a much more restful night. And therefore, so did I.

By plcpainter On 2011.09.02 20:29
What is GABA?

By karolinakitty On 2011.09.02 20:36
pic, GABA is a supplement...
It actually is gamma-aminobutyric acid, an important chemical in the brain, it regulates the firing of neurons.

GABA supplements are claimed to:
Increase the level of Human Growth Hormones (HGH)
Induces relaxation and sleep
Reduces muscle tension
Reduces stress, anxiety and depression
Promotes well being

I haven't tried it yet, but it is on the list. After we get through this series of kidney /liver herbs we are trying that next!!!!

By lurkingforacure On 2011.09.03 18:27
I have read many places that GABA in supplements does not cross the blood brain barrier...which if true, would render it useless to help our PWP. You may want to research this and talk to your doc before adding another pill to your loved one's regime.

Interestingly, Neurologix is the outfit that is doing gene therapy to increase GABA in the brain. Their phase II trial apparently is doing well, we are watching this company with interest because they are one of the few not focusing on dopamine replacement therapy, but, rather, on other mechanisms of PD. The team that started this company sounds solid and they have been working on how to increase GABA in the brain for over a decade.

By LOHENGR1N On 2011.09.03 20:12
The Gene Therapy bares watching however before hopes and dreams soar it is very important to note that Neurologix admits in it's report that and I quote;
"The gene therapy would be used to reduce symptoms and not alter the underlying disease process. Finding novel therapies are key as many Parkinson's patients stop develop complications after prolonged use of traditional medicines."
They claim a 27% improvement in some patients in their testing group. I hate sounding the warning claxon on these new projects however one has to balance the company claims against the results. No matter how humanitarian, the bottom line in companies is profit. And the bottom line on this is the natural progression of Parkinson's Disease continues to advance even with this therapy. We have to read the fine print carefully. Take care, best of luck and hang in there.

By karolinakitty On 2011.09.04 08:57
Lurking... it depends on who makes the GABA and what is used in it. Natures Sunshine, a long time(40+ years) herb and supplement uses glutamine and taurine, (amino acids) which are only 2 of the few to cross the blood barrier. It has spirulina and passion flower also. Natures also has a large group of doctors (who do clinical research) associated with their products to make sure the products work as they claim

The key in finding supplements that work and cross blood barriers is reading all that is in them. Each herb company uses different ingredients in creating their supplement, It's important to research and know the herbs/supplements or have an herbalist that is truly in key with PD or any other neurological diseases.

As far as the gene therapy...we tried to get into this last clinical trial but were denied due to the fact he is not on carbidopa/levadopa. As some of you know some PD+ disease patients don't take this because it just doesn't work, so even if it does work, I guess it would be no use to PD+ patients since they won't even involve them in the study. I talked to a real doctor on the phone because i "lied" on the survey, It wouldn't accept me when i didn't click the leva/carb button. SO I figured I would click it and sure enough we were called. I explained about the PD+ when talking to him(from Duke) and inquired as to why? Seems only those who are currently on Sinemet etc. Have had good results with the therapy, so again the plus diseases are out with still not even a glimmer of hope for treatments. In all honesty, the 20 some% increase in function can be done with physical therapy and other NON medicinal therapies, we just wanted to try to get in and see what was up...and how it worked and IF it worked that much....

By parkinit On 2011.09.04 18:14
Yes, sleep disorders are common with PDers. However, they all are not moving all the time. Some simply have the rigidity and no visible "shaking." Mine will be up and down, then "I'm stiff," so we do a few passive exercises in the middle of the night, then snacking, then working at the desk. This past week, he was up from 2-6 a.m. for two nights in a row. I have caregivers at night because of this. I don't know how you all do it without other caregiving assistance as I become quite mentally impaired myself with sleep deprivation. We decided one of us needed to be functional during the day for both our benefits.

Then I feel guilty... I was just dealing with sleep deprivation. Those with this disease deal with much, much more.

By dbacksgirl On 2011.09.06 00:04
parkinit -don't feel guilty for bringing in caregivers. you won't be able to help your husband if you're too exhausted to function. obviously, his care and well being are your top priority, and you can only make sound decisions as to his care and safety if you are somewhat rested. So please, if you can afford it, keep with the caregiving assistance as long as you can. I ache for families of PDers who are trying to do this on their own. The minute you think you have a handle on something, something new pops up. The range of symptoms my mom is experiencing is mind-boggling. The newest thing is shouting out things for no apparent reason. We believe as fast as things have progressed she is beginning to experience dimentia. I have less of an idea how to deal with dimentia than I do with PD. We've discussed trying sedatives (for her, not us) but after her negative experiences with every medication they have prescribed, that doesn't seem a viable option. At this point, all we can do is keep her safe, comfortable and not scared. We're scared, but we're not going to let her see that. We don't know where this next phase will take mom or what she will need, but as I'm sure you have found out, the situation will dictate the decisions we make. You can't plan or try to second-guess this cruel illness. Please hang in - I've learned in a very short time, there are people out there who care and are willing to listen and share their experiences and ideas. Try and get some sleep tonight.

By susger8 On 2011.09.06 08:04
Have you tried low doses of either Seroquel or Clozaril? These are antipsychotics that are sedating in the doses given to people with schizophrenia, but in low doses are sometimes effective for hallucinations and nightmares related to PD. This would be something to discuss with her neurologist. Is she seeing a movement disorder specialist? This is a neurologist who has additional specialization in movement disorders such as PD. They usually have a lot more knowledge of the disease and are much better with the medications.

Sue


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