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Topic Fatigue, pain, and depression Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2011.01.04 18:26
There are several posts here this relates to so I'm giving these comments their own post.

Energy level changes: my guy has tremendous fatigue from PD, and this directly corresponds to his energy level. Maybe your LO has this too. We cannot really plan much of anything, as it varies from day to day and hour to hour. It helps to remember he can't help it. We've racked our brains trying to figure out why one day he feels exhausted and unable to do much of anything, the next, he is better. We have not been able to figure this out, other than to realize that sleep can help. If he gets a decent night of sleep, something that has not happened in a long time, the next day is better than if he didn't.

Pain: a LOT of PWP have pain. My guy has a LOT of pain and his meds do very little to help. We take aspirin and sometimes Ibuprofen. The pain makes him cranky, snappy at our kids, ill-tempered, and reclusive. It also zaps his energy, see above. Being in pain does not really allow you to do much of anything. Again, it helps to remember he can't help this. Like most, he'd probably do just about anything to be rid of the pain.

Depression: I don't think we have this, but I fear it. I read recently that 95% of people with chronic pain, whether from PD, cancer, MS, you name it, become clinically depressed within a year. I don't know if this is because the depression results from a true chemical imbalance, which we already have with PD, or from a feeling of hopelessness because the pain/tremor/rigidity/anxiety is relentless. Either way, again, it seems to be part of the disease.

It's a vicious cycle, to me. They feel physically horrible, so get mentally distressed, which makes the physical symptoms worse, which makes their stress worse, and on and on. I've actually wondered what would happen if a PWP were put into a coma for a couple of months, just to give the body a rest? One could never do that, of course, but I wonder if any regeneration could take place in that situation.

If anyone has read the book "Cheating Death", it has several true stories of people who should have died, but survived, because their body went into a sort of no-man's-land of suspension, one example being a girl who was skiing and fell headfirst into a freezing creek. She should have frozen to death, or drowned, or both, but the cold put her body into a suspended state, and she survived. They call it chilling therapy, and once the body gets to a certain chilled temperature, processes stop but cells do not die, it's crazy weird. They chilled a boy whose leg was cut off in a boating accident, he would have absolutely bled to death but they immediately air lifted him into a hospital that had a chilling facility...they chilled him and while chilled, sewed the leg back on and incredibly, he is not only alive today but has both legs. Suspending the body like that, it does make one wonder. But my guy hates the cold, lol.

By caregivermary On 2011.01.04 20:12
lurking,

Just a thought... My husb has a lot of neck pain which then causes a severe headache- if untreated. He is now on 400 mg of ibuprofen every three hours and 50 mg of lyrica twice a day. This has worked for six weeks now. You are right about the pain causing depression, etc. Pain is a big issue with Parkinson's and most in the medical field don't understand this. His posture is so bad that sitting in a chair or the car will eventually result in neck pain or a headache. Unfortunately, he is in bed most of every day now.

By lurkingforacure On 2011.01.04 21:58
cgmary,

Just a thought, on the posture/pain issue. We recently bought one of our kids their first real bed mattress and it's 100% latex. Latex is of course waterproof, antimicrobial, resists dustmites, and is incredibly comfortable. I learned that almost all of Europe uses latex beds, not innerspring like we do here in the states, although that is changing.

I have to say, this bed is amazing. You can choose the firmness of the latex...we got this one from Costco and it has several layers of latex in it which you can move around to make it firmer or softer, as you want. It's expensive, but really no more than a very good innerspring mattress. We plan to use it until graduation from high school and beyond if possible, and that's a very long time!

The latex supports the body so there are no pressure points. If you lie on your back, which my husband does a lot when he sleeps, it mimics the way you naturally stand. It's like temperpeudic, but not nearly as expensive and not nearly as hot. It also does not create an indentation where your body is, which temperpeudic and memory foam do. I am almost jealous of that bed, and wonder if my husband would sleep better if we had one for us as well. I know if I lay down with our son on this bed, I cannot keep from falling asleep! You may want to research latex beds and see if one might not help your husband. You can also get latex bed toppers, but they cost almost as much as the mattress. Be sure to research 100% latex, not a blend.

By care4loved1 On 2011.01.04 23:09
I am so very frustrated as I read these posts and so many people say they or their spouse has so much pain with this disease as my husbands neurologist from the movement disorder clinic tells us that there is no pain in PD. How can he say that? It is quite evident that their is pain. How do I get him to understand that? My husband is up most nights with heating pads on his arms and legs because or the pain. Just very frustrating ...... And needed to vent.

By shakingpt On 2011.01.05 05:13
From a previous post but still applicable. Show this to your neuro that doesn't believe PDers have pain.
This article is from the Parkinsonís Foundation. If you have not read it I think you should. Pain from dystonia is addressed in this article as well as other common areas of pain associated with PD that should be of interest to everyone.
http://www.pdf.org/en/winter04_05_Pain_in_Parkinsons_Disease

By caregivermary On 2011.01.05 09:39
lurking-thanks for the info on latex. I was in Costco last week and saw both items you mentioned but didn't know much about them.

I also think the article shakey refers to is excellent. I used it yesterday with the home health nurse. She took a copy of it to share with her co-workers.


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