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By Newcaregiver On 2008.01.23 13:20
Hello Everyone! I am new to the forum and this is my first post, although I have been reading over the past week or so. I have learned a lot from all of you already! My spouse was diagnosed with PD 2 years ago so we are in the beginning of this adventure. His symptoms (with hindsight) probably began about 7 years ago with a tremor in his left hand. That progressed to coarse tremors in left arm and left leg with the addition of slowness of movement, facial freezing and stiff muscles. He is on quite a few drugs - Entacapone, Gabapentin, Carbidopa/Levodopa, Pramipexole - which improved his condition immediately. He now is in a fairly "maintenance" stage, but we are noticing changes: he is slowing down and his tremor is increasing. Overall he is doing very well. He retired last spring because it was just too draining to try and work all day. He spent his time at home trying so hard to rest and just prepare for the next day of work. It was just too exhausting.

I have a few observations from his experience that I am wondering if others are having: 1) he has so much trouble sleeping. His neurologist thinks his sleep center has been disrupted since he can only sleep a few hours at a time (also the stiff muscles and discomfort may impact that also). This makes him so tired during the day. He does try and nap, but feels very very drained most of the time. 2) so much indigestion and lower GI/constipation issues also. Do any of your PWP's experience these problems and have you found anything that helps?

I appreciate so much being able to converse with all of you and learn from your experiences.

By mylove On 2008.01.23 14:37
Interesting...

My partner and I have only been sharing sleep for a while now, but I've noticed that he sleeps very, very lightly and wakes often, leaving him less than well-rested. I, too, am eager to find out if there's anything I can do to help this facet.

By Pick On 2008.01.23 20:31
It's true, PD often affects the sleep center of the brain. I'm no expert on all the details but it's different from the typical "upside-down" (up all night, sleep during the day) phenomenon that many elderly experience. Based on past experience I can confidently offer 3 pieces of advice:

1. encourage naps...many doctors may discourage naps in an effort to reverse what they think is that upside-down affect, but my dad's neuro said "PD patients need any sleep they can get."

2. be extremely careful with any prescribed sleep aids (which I've found many doctors very eager to throw at us). They can exacerbate the cognitive and motor function impairment PD patients already struggle with. In fact I wouldn't even consider any sleep aid unless the scrip came directly from the neuro.

3. (this one is kind of far-fetched) keep an eye on Acadia Pharmaceuticals clinical trials for pimavanserin tartrate....not yet FDA approved. This is the first drug developed specifically for PD sleep maintenance (also PD psychosis).

As for constipation, yes this is also very common in PD...partially a direct result of the Parkinson's but also sometimes due to meds. Constipation isn't fun for anyone but for PD patients it's especially troublesome. According to my dad's neuro it amplifies the PD symptoms (something to do with absorption in the gut...I don't know) so it's very important to stay on top of it. We've found 3 servings of Benefiber/day plus a warm 'prune shake' at night (4 oz. cream + 4 oz. prune juice, 2 min. in the microwave) really helps.

Good luck to you. In our house I'd say that on a scale of 1 - 10 the sleep issue is easily an 11. It's caused many, many live-in caregivers to quit because *they* don't get any sleep either (I can't blame them because I know before we had caregivers I was averaging 3 hrs. sleep/night). This will most likely be the issue that finally forces my dad into a nursing home (unless he breaks a hip first). You are wise to learn as much as you can about it now.

By annwood On 2008.01.24 00:25
I can agree with the brain center being part of the problem. I found with my husband that it was also due to the fact that he had trouble rolling over in bed and there is also the rigidity of the muscles, which can be compared to 12 hrs of isometric exercise. We put a bed rail on the side of our bed - it just sliped under the mattress - and this allowed him to turn in bed. He found the memory foam mattress cover to be of great help. The sleeping problems actually appeared rather early in his disease. As Pick said, he found frequent naps beneficial and his favorite place was a recliner.

The constipation and indigestion were quite a problem and they only got worse. We used Prilosec for the indigestion and elevated the head of the bed on wooden blocks, also available at Linens & Things. He should not lie down for two hours after eating. Our best treatment for the constipation was a recipe from a support group in Oregon. The neuro gave it to us. You make a big batch of it and put it into small custard cups. It can be frozen indefinitely. He took one large tablespoon a day and that seemed to work well. You have to do it every day. Once the constipation is severe you need to use suppositories. The MD told us there were problems using Sinocot so I would avoid that. I am really sleepy but tomorrow I will post the recipe.

By lule On 2008.01.24 05:48
Dear Newcareigver,

I'm a PD patient. I have found out some things are very helpfull. 1.try to encorage your spouse to be as active as possible 2. Do some Yoga.

Otherwise we will keep you in our prayers.

Yrs
Peter (lumon67@yahoo.com)

By kuttlewis On 2008.01.24 08:59
My husband was and is an extremely light sleeper. Sleep deprivation caused him to be hospitalized several times. We've tried Seroquel which worked for a time before psychosis set in and we had to drop it. Every other benzodiazepine caused psychosis. He is now on Rozerem, which shows no side effects and allows him to sleep. I have long moved out of our bedroom because my slightest movement would wake him up which in turn would wake me up. I'm certain you can go mad when sleep deprived.

Another thing that helped him fight off the stiffness during the night is a two o'clock pill of Sinemet and Comtan. We've switched to a 10 pm pill-time to allow him some uninterrupted sleep and he takes his first pills around 6 am. He tells me when he has good dreams, he falls back asleep easier. Some of the sleep medication block dreams, and that can be really bad. John used to take Trazedon, and when he went off it, he had such incredibly vivid nightmares for three or four nights that were really scary.

As for constipation, movement seems to help, as well as a diet that includes greens and fruit and exercise. Suppositories work the best.

By Newcaregiver On 2008.01.24 09:43
Goodness! Your responses are so helpful. I appreciate everyone's input on this.

Pick: thank you! Yes, naps are so important and his neurologist has encouraged them. He tries to nap twice a day, but rarely manages to sleep more than 10 minutes, but even 10 minutes helps. for sleep aids: I agree. He asked for sleeping pills and tried some, but they made things worse so we gave up that idea entirely. for the Acadia pharma. med: we will watch for that! We will also try the benefiber...that might help more than the nightly dose of Phillips.

Annwood: I was so sorry to hear about your husband's passing. I have only read posts back about six months so don't know your whole story, but my heart goes out to you. Thanks for upcoming infor for the recipe for constipation. I am very interested in that and we are willing to try!

Lule: I hadn't thought of yoga. I will try and encourage this idea. We do walk two miles every day...I have to force this issue a bit, but if I go - he goes along so it benefits me also! Of course, he trails way behind and I have to loop around to stay abreast, but we are in a routine of walking in the neighborhood (and I go in circles a lot!) or we go to a track in the park nearby. I really think this is helping him keep more limber than he would otherwise. It can be very painful for him some days and I feel badly that I press him on this, but he is an old Marine and really pushes himself and everything I have read seems to encourage this.

kuttlewis: thanks for the med idea of Rozerem...we can look into that also. For sleeping: he rarely sleeps in our bed now, but prefers the recliner. He also has a bad back from a Vietnam war injury so that exacerbates his sleep problems also.

thank you to all. Great ideas and I appreciate your understanding and support!


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