Monday, February 7, 2011

It's Hard to Sleep with Parkinson's Disease

More on Sleeping Problems and PD

Steve's sleep problem has reared its nasty head again.

Some sleep and some can't
As some readers know, Steve began a very low-gluten diet almost 1.5 years ago. He does not have Celiac's nor IBS but for some reason, it seemed worth a try. The result was that he found an improvement of his sleeping problems. Occasionally we will cheat or slip and a little too much gluten will find its way to his plate or glass with the resultant sleep disruption. That happened this week on a little status check.

The good news is that he says that gluten-free pumpkin pie tastes like a regular pie and I will respond that it is a regular pie with slight variations.

Steve did not have many sleep interruption issues prior to being diagnosed with PD, at least none that he would discuss or acknowledge. I do know that he would occasionally have very vivid dreams, some REM behavior, and some sinus breathing issues which he would ignore. In retrospect, the first two were alarms. What I do know is that he would fall asleep long before me and sleep through the night, oblivious to children or animals.


On a hot day, the only option
 Another thing that we saw again this winter was a slip back into dehydration. Whew! We caught it before there was a serious progression and are addressing the problem in both Steve and Harry the dog. With Harry, starting him on chicken broth will usually do it; so I'm doing that again. He also likes to take a chomp from a snow pile on his way back into the house which suggests that he might prefer really cold water in his water bowl.

 This morning I was trying to recall whether any other family four-foots had suffered similar issues. And there it was the seasonal changes which can cause horses to upset their electrolyte balance by not drinking.  Griffin, our daughter's appendix registered Thoroughbred-Quarter Horse had the problem one fall. It’s pretty easy to see a pinch of skin that doesn't retract very rapidly. What to do? You can lead a horse to...but you can't...We had to go the electrolyte route. Sprinkled over feed and in a tubed paste - it worked; and he started sucking up water again.

That beer for the Super Bowl XLV was not a good idea; it could have upset all sleep for Steve last night. Not only was there gluten, there was alcohol which is dehydrating. He was smart enough to take a gulp or two and then set it down for the evening. I should have read the lists first - what wasn't I thinking?. The information abounds for gluten-safe alcoholic beverages.

Because the sleep issues are a PD symptom, they will not vanish. Because they can be exacerbated by dopaminergic treatment, they are not going away. The most common are the levodopas (Sinemet) and ropinerole (Requip).

We often forget the association between depression and sleep problems; how do you treat your depression?

A helpful catnap
 Steve still has some prejudice against the afternoon nap, he feels he must resiste what he sees as excessive daytime sleepiness which he often feels after taking Sinemet.  Nonetheless, he knows enough to take that nap.

Occasionally he will take an aspirin before bedtime. As a NSAID, it can't hurt and for some reason - perhaps pain relief - it helps him fall asleep. We also time the Vitamin B complex to just before bedtime. If he will drink plenty of fluids (water) during the day, he can ease of in the evening. If not, I am more concerned about the dehydration than his sleep - heartless creature that I am.

The best thing that he has done is to drink a cup of unsweetened chamomile tea with a little milk. He has found that to be sufficiently relaxing to help him go to sleep.

We've read that more than 80% of PwPs have sleep disorders or sleep dysfunction ranging from insomnia, excessive daytime sleepiness, and the parasomnias which include: sleep talking and walking, REM behavior disorders, sleep terrors. We have read about sleep apnea issues which should also be considered. There are CPAP (continuous positive air pressure) machines which can help. We;ve read and tried memory foam mattresses and Steve's favorite, the heated mattress pad, which is more effective for him than a heated blanket.
Oh for a Cat Nap

I'm over-the-top about some things but in treatment, I prefer the less is more approach to start. I'd like him to try breathing exercises again to help him relax before bedtime but since he is no linger having swallowing problems, he bristles at the words exercise and sleep in the same sentence. Still, I think they might help to release the tension and frustrations of the day. I cannot stress enough the importance of healthy breathing habits.

We are interested in hearing from others about what works for them...even the medications that work. We are also interested in hearing about things that worked for awhile even if they stopped working.

additional reading:
A must read by Dr Robert A Hauser etal

6 comments:

  1. I look forward to your entries. I was diagnosed with PD April 1, 2010. I know I had it for awhile before then, but couldn't get into a neurologist until then. I was put a Sinemet at first, and after a week, it made me sick. I was then put on Azilect, which was very expensive, even with insurance paying at least half. After some on-line research, I found the generic form from an overseas pharmacy. Much more affordable, and it works for me.
    I find that lifting weights and building up strength in my arms makes me feel better. I take multivitamins, calcium, D3, and complex B vitamins.
    I try to eat right, get enough sleep, and avoid stress. There are days when I have more energy and think I've found the "secret formula"! But will have days when I am tired, and have to force myself to do everyday tasks.
    I do not have any tremors, unless there is stress, tiredness, or hunger envolved. Strange!
    I also do not actually feel hungry, but know I should eat when I feel week and shaky.
    I did start a journal, but there always seems to be better things to do! We do have a great
    group of friends and family for support. My husband is on Chemo right now for colon cancer, so there is stress! But he has a good attitude, and we just expect that everything will be o.k.! Anyway, I will keep reading your entries and thanks for the info and help.
    RAR

    ReplyDelete
  2. Please check clinical trials for the possibility of entering an open label trial for rasagiline - there is one for which you might be eligible although your diagnosis might be too recent. What this would mean is access to the medication without cost for the duration of the trial, should you be accepted.

    About 25% of PwPs do not have tremors. Many tremors are worse with some kind of stress - you certainly have a stressful situation but it appears that both you and your husband have such a positive attitude that you simply walk over the stress.

    It is not unusual for people to experience nausea when beginning some PD medications. I'm glad to hear that you are able to obtain rasagiline (Azilect) as a first-line treatment. Way to go!

    Make no mistake, we all have days when we are tired and have to push to get anything done - even getting out of bed. You're not alone there.

    Keep up the fluid intake and don't push your body to hypoglycemia levels before you have a snack...keep those endorphins coming through your exercise routine and remember that you probably need to replace those burned off calories.

    We want to continue the journey with you.

    ReplyDelete
  3. Just checking to see how Steve is doing. I have read past entries, and wish both of you the best. You have done so much research and sharing your knowledge is appreciated by so many of us, I know!

    Having been diagnosed only a year ago, I am only at the beginning of my "journey" with PD.

    Oh, I also find caffeine, both in coffee and green tea, a lift in my energy level, for some reason.

    I also don't like the cold. We live in northern Minnesota, so right now I just stay inside some days. But the days are getting longer and more sunshine - I can see Spring ahead!
    RAR

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  4. Hi Minnesota,

    Yes, Steve also dislikes winter also. As I write this the winter winds are beginning to rumble anew.

    Every year when the vernal equinox occurs he is positive that Spring is upon us. And I remind him every year that it has snowed as late as Mother's Day here in Northeast Ohio.

    Don't forget that there are small amounts of caffeine in chocolate.

    ReplyDelete
  5. Greeting from Malaysia,
    I'm new here.I was blog hopping when i came across your blog.and thanks for all the info! i learn a lot from your entries!
    regarding the sleep problem (sleep disorder) that happen to Steve, I would like to recommend you to try out this new product-Sleep Time.It contains Melatonin; a hormone that our body produce every night to kick start sleep. Sleep Time contains of natural goodness of 99.5% fat free milk is blended with premium combination of Magnesium, Vitamin D and Alpha lipid to nurture the body during rest.A soothing cup of Sleep TimeTM as part of your nightly routine is a great way to unwind for a good night’s sleep, so you can awaken feeling refreshed and ready for the day ahead.
    Try it out and feel the different! :)
    u can email me if u need further info on it:)
    ezira17@gmail.com

    ReplyDelete
  6. Greeting from Malaysia, I'm new here.I was blog hopping when i came across your blog.and thanks for all the info! i learn a lot from your entries! regarding the sleep problem (sleep disorder) that happen to Steve, I would like to recommend you to try out this new product-Sleep Time.It contains Melatonin; a hormone that our body produce every night to kick start sleep

    ReplyDelete

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