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Topic Fatigue and sleep Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2009.07.05 01:26
We have a neuro appt. coming up and I have a lot of concerns about our sleeping habits, and need to see what is "normal".

My husband will usually go to bed around 11 or 12 at night...and can make it to 3 or 4, sometimes 5, and then he's up. He will knock around until his first med dose at 6am, then shower, get dressed, bang around some more, and then go back to bed around 7, sometimes 8, for half an hour or so (my sleep is crap too, because when he gets up, I wake up too).

He'll then go to work, usually all day, but has been coming home earlier and taking a nap immediately. If he makes it to the end of the work day, he still takes a nap as soon as he gets home. Today he napped almost the entire day, every time our kids wanted to see daddy I had to tell them he was resting, they do not understand and it is so damn hard. I even took them over to family for several hours this afternoon, thinking he'd get a long break of quiet, and when we got home at 8pm, with dinner in hand, he ate, and went back to bed. I took the kids outside to watch the fireworks which we can see from our backyard and he didn't join us, despite resting most of the day, and was back in bed when we came in. I don't know what to do.

He tells me that he is falling asleep at work during the day also, that he gets so tired he has to lay his head down on his desk. We split his med doses up so that he doesn't get so much at one time, and that helped a lot for awhile, now the sleepiness is creeping back in. He mentioned this morning that he was "bored" and that he felt life was just the same ole' same ole', with the kids having this issue or that (ha, he should try actually dealing with the issue instead of just hearing about it, occasionally, from me) so I am wondering if he is getting depressed?

Any suggestions? We don't have the sundowning I have read about, but this constant sleepiness and incredible fatigue don't seem like something we should be dealing with only 3 years into this. I remember that he was incredibly fatigued before dx, having to lay down when he got home from work or doing the least little thing (like driving us somewhere) and I am wondering what that might mean in terms of progression, if anything.


By Tara On 2009.07.05 04:23
Has he had his thyroid checked? Hypothyroidism can cause extreme fatigue and sleepiness. It may not be PD.

Depression would be a natural outcome of having no life because you're in bed all day.

By Pearly4 On 2009.07.05 06:46
Depression is a reality in Parkinson's and sounds like a real possibility. A thyroid problem could be contributing or the cause for it too. Bottom line, you definitely need to bring it up with his doctors. Aside from the havoc it may be causing with your family life and marriage, it's a physical problem that needs to be addressed.

My mother had two major bouts with depression - one just before diagnosis and one a short time after the official pronoucement. Both were well treated with medication and/or therapy at different times. Sleep improved with medication as did life in general. Certainly the physical symptoms of Parkinson's can cause exhaustion themselves -- think of constantly forcing muscles to work, even for such autonomic functions as breathing, and you can see how much energy he might be expending.

Bottom line - it may be an abnormality of the disease or not, but needs to be addressed and treated.

By bandido1 On 2009.07.05 16:59
Patient's view: DX'd in 2006 and age 77 -- I am tired every day, nap 1-3 hours during the day and sleep nightly in 2 hour intervals. My neuro does not seem concerned but has given me an RX for depression. So far I would not classify me as depressed. I agree that muscle loss tends to accentuate weakness and therfore fatigue. Check with the doc but dont be overly concerned. We PD'ers believe it is a part of the disease and/or treatments. Bob C

By WitsEnd On 2009.07.06 10:55
"Terminal insomnia" is something that goes with Parkinson's. I was never sure what that was except for not being able to sleep. We had dad on sleeping pills for the last years of his life for this.

My dad used to nap though a lot even before he was diagnosed with PD. My boss went through a sleep study, got diagnosed and treated for sleep apnea and described the treatment as "a life altering experience". I was having problems and went for a study and also got diagnosed and treated for sleep apnea. I learned that just because you're asleep doesn't mean you're really getting restive sleep.

After my experience I realized dad probably had sleep apnea for a number of years before the Parkinson's was ever diagnosed. Unfortunately by the time someone suggested the study to me and I got my CPAP machine, dad already had dementia and I knew there was no way he was going to keep the CPAP headgear on. He also wasn't a candidate for the surgical correction either.

Here's a brochure about sleep apnea. You might want to read it and see if it applies.

FYI as the Parkinson's progressed, dad did start to "sleep" more and more and got harder and harder to rouse with a greater frequency. I'm not sure I would have described that as sleeping though. It was more of an unconsciousness.

P.S. They treat even mild sleep apnea these days. Not sure if the sleep apnea causes the depression or vice versa, but they've found links with that, heart disease, high blood pressure, metabolic imbalance, diabetes, and other stuff.

By ihatepd On 2009.07.08 01:49
The daily sleep and fatigue routine you describe for your husband is very similar to the one my husband experiences seven years after his diagnosis with PD. On the weekends, he needs to take a nap after breakfast; every day he naps once or twice in the afternoon and every night, he's in bed by 8:30 or so.

He is taking two different anti-depressants and they've REALLY helped his attitude and ability to cope. He is also taking Provigil to help deal with the constant feeling of fatigue which is worsened by the PD drugs he takes. It helps quite a bit. His physician recently increased the daily dose of Provigil because my husband complained the old lower dosage wasn't working as well as it once had. The doctors also did a thyroid test on him and concluded PD and PD drugs were the cause of his need to take more naps than he'd like. Good luck in your efforts to deal with the issues.

By annwood On 2009.07.08 08:24
I think that most fatigue is due to PD. Frequent naps seem to be necessary as well as frequent awake periods during the night. The later being due to muscle fatigue, an inability to change positions frequently while sleeping and the need for more frequent urination as the muscles of the bladder become involved. If one is dealing with PD dementia there is the sundowner issue, which often involves night terrors. I would caution against a great deal of testing for other causes - it is expensive and the yield is very small. We all look for other causes that might be treatable instead of recognizing that PD is running it's course.

As for caregiver fatigue - it is a given in PD. I never realized that one could go on so little sleep. You actually fantacize abou a full night's sleep.

By WitsEnd On 2009.07.08 13:41
Only one word of caution about not sleeping. There are cases where people with sleep apnea become so sleep deprived they actually fall asleep at red lights which can be dangerous. There's a difference between being tired..and being tired and sleepy and nodding off everywhere.

If someone is later in the disease, then I wholeheartedly agree with annwood, about not doing the testing. If someone is still early in the disease--and still driving--it probably does need to be checked if possible. Testing is 1 or 2 nights at a sleep lab. You have electrodes to monitor your brain waves, leg movements, oxygen, heart beats, and eye movements in a set up that looks like a hotel room. If they determine you have sleep apnea, they give you a little machine that is like a pump for an aquarium that is called a CPAP that blows air up your nose during the night. They re-check you after they put you on the machine to make sure it fixes the problem (thus in some cases night number 2).

Most insurances will pay for the lab and machine at a standard co-pay rate after a deductible (80/20 or whatever).

It was downright unnerving when the doctor gives you your results and tells you that you only dreamed twice when you were laying on your side then and that you stopped breathing for 45 seconds or longer 12 times and your oxygenation dropped down below 90 five times and you woke up 40 times--all of this while you thought you were asleep!

My significant other jokingly refers to my CPAP as "my Darth Vader mask" (it's not nearly that bad). The doctor also suggested sleeping on my side since the apnea was positional and worse when I was on my back. It may sound goofy, but I swear after two weeks with the CPAP I felt like a new person and had more energy than I had in years...and everybody I've talked to that did this said the same.

By packerman On 2009.07.09 11:18
AMEN! me too!

my CPAP has been a Godsend.

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