Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Tuesday, August 28, 2007

Trying a Different C-PAP Mask

This makes the fourth different style of mask I've tried, if you include the nasal pillow they put on me in the Sleep Study that I almost went hysterical over. And, this is the last one they have for me to try. So, it's get used to this one, or I'm just not going to be able to do it. The only other chin strap they had was just not what I had in mind, and I could tell it wouldn't work. And, I would have to have paid for a change on that, unlike the mask itself. I have 30 days to decide if I can tolerate this mask.

I had initially categorically turned down even trying on the full mask, which is what I am trying now. At that time, I was still adjusting to the whole idea of it, and the thought of having nose and mouth covered up was just too claustrophobic sounding to me. Now, as I have gotten used to having this claw on my face, it seemed like it was worth trying, as a last resort. It does solve the mouth breathing problem, without having to wear anything extra. And that's a big plus. It leaks though, as I have no chin, and a pug nose, with nothing for it to hold onto. I did sleep longer last night than most nights, so that's a positive sign in the right direction. When I woke up at 2:30 to go to the bathroom, though, I couldn't get it to stop leaking cold air down my neck. By the time I readjusted it somewhat, I was wide awake. I made myself stay there until almost 3:30, though, figuring it would help me adjust to it, even if I were not asleep.

This whole frustrating experience has really been a test of my patience and commitment to see this thing through. Things have always come pretty easy for me, if I really wanted to learn how to do something. I'm not used to having to work so hard to adjust to something new, so this has been a real challenge. DH says when I get mad at the straps I look like I'm about to have a conniption, flailing at my face and yanking the straps off. ROTFL But it's no laughing matter at the time. I have a new appreciation for students of mine over the years who would get so frustrated when they didn't understand the math I was trying to help them with. A pity that I hadn't had an experience like that then, so I could have been more empathetic.

My Sleep Apnea is only mild, according to the doctor, so it's not like I'm going to die in the night if I don't use the machine. But, he wants me to use it, because he feels it will help with my PD symptoms, particularly the brain fog and fatigue. I would love to get out of this haze and have more energy, so I'm trying, really trying to make this work.

I would appreciate your prayers and good thoughts to help me be comfortable with it, as I continue to pray for this each day.

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10 Comments:

  • At 8/28/2007 6:55 AM , Anonymous Joe said...

    I wish you luck, and I will certainly pray for you. I can tell you this from experience - your doctor is right, it will help you with the whole brain fog thing. I have been wearing a C-Pap for almost a year now. It did take a little getting used to, but now I couldn't imagine life without it. I feel so much more rested.

    I have an idea for you, if you are willing to try. It's a very simple relaxation technique that I would reccomend you try for 20 minutes or so before you even put the mask on or try to go to sleep.

    First, find a comfortable sitting position. (It's important to be sitting, and not lying down when you do this because your lungs will expand further and easier)

    Once you are comfortable, try to let your muscles relax. If you can't let them relax at first it doesn't matter. If you do this on a regular basis you will notice that pretty soon they will relax on their own.

    The rest is all about breathing. Close your eyes and take a slow (and I emphasize slow) deep breath in through your nose nose until your lungs won't hold any more, then slowly (and again I emphasize slow) let all the air out through your mouth. That's all there is to it, just keep repeating the slow breats for 15 to twenty minutes; in through the nose and out through the mouth. For some people it actually helps if they actually think the two phrases "in through the nose," and "out through the mouth" as they do it.

    The slow deep breaths do two things for you. Breathing in through the nose actually requires a little more effort for your muscles, especially for those of us with obstructive sleep apnea. By filling your lungs slowly to their capacity you increase the amount of oxygen the blood absorbs at one time. The effect of the exercise and extra oxygen causes the body to release endorphins - a natural pain reliever and the same chemical that makes you feel good when you laugh.

    another trick you can use with this exercise is to mentally say a prayer. One line as you breathe in through the nose, and the next as you breathe out.

    Again, I apologize for the long winded explanation, but this really works. It is one of the techniques for relaxation that they teach at natural child birth classes. Once you have done this for 20 minutes or so you will be relaxed enough to sleep easier. (It also teaches you to breathe in through your nose which is helpful for the c-pap)

     
  • At 8/28/2007 8:14 AM , Blogger Dirty Butter said...

    I appreciate your prayers and your suggestion, Joe. I don't have any trouble getting to sleep, but I will certainly use your relaxation breathing when I can't get back to sleep. And don't apologize for a long comment. Doesn't bother me, and I appreciate your feedback greatly!

     
  • At 8/28/2007 5:57 PM , Blogger Marion said...

    That's a great description for deep breathing relaxation, Joe!

    DB, I'm wondering if it would help if you used it every second night. That helped my ex for awhile. I can certainly understand you wanting the mental fog to lift and the fatigue to go away some.

    You can feel assured that you did the best you could, though.

     
  • At 8/28/2007 6:18 PM , Blogger Dirty Butter said...

    I agree, Marion. That is a very easy to follow set of directions. I may try the every other night ia next week, if I'm not better by then. "But I intend to have it licked by then," she said, with a very determined jut of her little jaw.

     
  • At 8/29/2007 4:56 AM , Blogger ComfyRest said...

    At the risk of sounding like a spammer I feel I should tell you of multi-use neck pillow that is also an alternative remedy for snoring that even works with a CPAP mask. It keeps your head steady so your mask stays on. My snoring was a problem for the spouse. My wife would often wake me to stop. We found an unexpected solution that has stopped my snoring: The SquidFace and ComfyRest pillows. The snoring relief on my back was an unexpected benefit of an invention I patented for being able to lie facedown comfortably and breathe without turning my head to the side. Also great for power naps. Snoring relief and many additional pain relief benefits are on my website. SquidFace.com

     
  • At 8/29/2007 7:57 AM , Blogger Dirty Butter said...

    I am having problems with spam posts lately, comfyrest, but I don't consider this to be spam. Your information is appreciated and certainly on topic. I looked over your site, and was most impressed.

     
  • At 8/29/2007 12:10 PM , Blogger Elizabeth McClung said...

    I'm a fellow mouth breather, so I read this with disturbed interest. If this mask works but leaves you awake, what about drugs? I use a sleep aid to keep me sedated, and another which works fine for about 1.5-3 hours (in case I wake in the morning). Doctors will say that sleep assisted sleep isn't as good as non-assisted sleep. I find though it is FAR superior to NO or little sleep.

     
  • At 8/29/2007 4:35 PM , Blogger Dirty Butter said...

    I get used to sleep meds very quickly, Elizabeth, and they stop working for me. So I use them very, very sparingly. I don't usually have so much trouble getting to sleep - it's staying asleep that's my problem.

    I was ready to quit trying last night, but I'm not really ready to quit. I'm just very frustrated. And I definitely agree that assisted sleep is far better than no sleep at all.

     
  • At 9/03/2007 2:32 AM , Blogger RUTH said...

    Wishing you well and sending hugs and positive thoughts
    rx

     
  • At 9/03/2007 4:29 AM , Blogger Dirty Butter said...

    Thanks, RUTH, and take care.

     

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