Parkinson's is not the end

Posted: Sun Nov 18, 2007 11:20 pm Post subject: Read This. Parkinson's is Not The End

A Good Evening to you all. For those that do not know me, I have Progressive Supranuclear Palsy. It is under the "Parkinsons Plus" umbrella. It progresses much quicker than Parkinsons and is normally terminal. It is what killed the Actor Dudley Moore. I probably have 6 months before I cannot type anymore. I am legally blind now and have all but lost my voice. I have retrocollis dystonia and fall backwards. I have eye, shoulder and neck surgery coming up. I am 49 years old. Here is my message, then a true life story of one night with this disease. My message is don't give up on one another. See one another all the way through. Have hope and know brighter days are here if you want them to be. Choose brighter days and live your life well. Don't let Parkinsons define you. Now the Story: Last night, I awoke, thinking I heard sounds coming from our living room. I heard a voice calling out "Mom". I tried to move but could not. Then tried to reach to alert Tammy, but my arms would not move. I could not speak. The sounds were still there, footsteps, shuffling around type noises. I remember yelling, though knowing that no sound was coming from me. Finally, I was able to move my legs over the side of the bed and fall to the floor. I could not stand, so crawled from the bedroom to the living room. I sat up against the wall and took a good look around. Nobody was there. I felt someone run fingers through my hair. Thinking it was Tammy, I tried to look up, but my eyes would not open (eyelid apraxia) right away. When finally my eyes opened, there was no one there. Something told me to check my blood-sugar. I crawled to the cabinet, pulled myself up and retrieved my tester. I have been diabetic for about 4 years. Never overweight, always ate smartly, it came from nowhere. The meter indicated "49", almost coma stage for me. I checked it again, and the result was the same. I felt I could walk and started toward the refrigerator. I was wrong and fell backwards hitting the floor hard. I was dazed but still conscious. I heard someone scream behind me, but something told me it was not real. I was thinking "this is it". I crawled to the refrigerator without bieng able to see. I could not reach the orange juice, but felt a can and opened it...it was Coke. I drank it and was able to feel a bannana and ate it. Within 20 minutes, I felt much better. Diabetes and PSP almost killed me. I cannot tell you how good it feels to still be here.
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wheelersceJoined: 02 Mar 2007Posts: 222Location: MI
Posted: Mon Nov 19, 2007 7:41 am Post subject:

Richard, We're glad you're still here, too! Your heart-rending story puts things in perspective and I am speechless before the faith-filled attitude that squeezes through your posts! You're on my prayer list. Sue W.
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 8:03 am Post subject:

Thank you Sue. I am rich, in the sense I have deep love from family and laughter is an everyday occurrence around here! Of course, above all, is the peace I have from God. No regrets. I pray the same for you this morning and wish you all the best in this upcoming Holiday Season.
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walkingbyfaithJoined: 06 Mar 2007Posts: 14
Posted: Mon Nov 19, 2007 10:13 am Post subject:

Richard, What an inspiring post. Your attitude is what I want for myself and my PWP. God Bless!_________________Walking By Faith
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 10:41 am Post subject:

Thank you Walking By Faith! Your Post Title says it all. Thank you for the Blessing, know that it is returned. Here is wishing the best for you and family during this upcoming Holiday Season.
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kmcclungJoined: 05 Mar 2007Posts: 41Location: Michigan
Posted: Mon Nov 19, 2007 11:46 am Post subject:

Richard, The truth is much more interesting than fiction. Thank you for sharing a very personal and profound part of your life with us. Ken
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 12:46 pm Post subject:

You are welcome Ken. I would like to hear some of the stories all of you have with your trials in Parkinsons. It gives me hope to see others overcome, knowing what they have been through.
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Mon Nov 19, 2007 1:59 pm Post subject:

Good afternooon, Rich. I'll share one with you (in two parts) but for myself, prefer not belaboring it in a play by play for the simply curious, morbid onlookers. Having lived the sequence hours ago and knowing I'll be doing so again shortly and forever isn't my cup of tea. "On" time is too valuable for that but not too valuable to answer your request. So many of us have these same little 'moves' like you mention. We're obliged to invent & master them to accomplish things we never gave a thought to in our earlier lives and/or stages. When I awaken after a three hour sleep segment I'm essentially paralyzed and on my good side facing like a little partial wall of knotty pine. This is the exact position I fell asleep in the 180 minutes +/- earlier. My eyesballs move but lack sufficient moisture so feel like sandy or scratchy as I consult my clock radio which is 'on' and nearby, tuned to rebroadcast the previous days NPR or CNN programming. I've drooled a good amount so the pillow case is soaked around my mouth. My left arm hurts and can't be moved, used, braced with....nothing at all without shooting pain. In other words it can not be flexed or muscle used. I have an apparent need to urinate but not urgent....enough to know I can't just lie there. Turing over and flopping with the help of gravity just as you describe requires me to either turn over in the bed rolling myself face down in the pillow or the other direction...face up towards the ceiling. Rolling face down is the harder and riskier because at mid operation with me face down into the pillow which has a waterproof liner under pillowcase I can become completely stuck which is sufficating and can last several minutes. Recall I have neck problems when unmediacted. So I usually go the other way: face to ceiling. To do this I swing one leg out over the edge of the bed behind me and stretch it way far out, elevated. This would be my left leg. This produces a cantilevering effect which after half a dozen tries enables me to wrench and slide/scoot my torso around and eventally drop down so that both knees are now resting on the floor, my torso, chest on mattress is across the bed. I suspect you know excatly what I'm talking about here. Time elapsed since opeinng my eyes? eight or ten minutes if I've worked diligently. With but one arm and hand that will move by muscle exertion, peeling a banana is out of the question. Indeed gravity unassisted motion being impossible or nearly so, tasks requiring fingers are not really possible at this point. I guess I could take a pill at this point...I keep several stashed at key places around my bed and living spaces for emergencies. I don't start dosing immediately. To be continued in a second installment. best wishes from Roger
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 5:30 pm Post subject:

Richard and Roger I am lost for words. when i feel at a low ebb, I shall read these postings again to give me a reality shake. What Inspiration!!!!!!!!!!!!!!!!! I doff my hat to such fantastic resolve. poker
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 5:47 pm Post subject:

Roger, we both are in a bad way...physically. Your mind is still very sharp, even if you feel you have lost some. You write as well or better than any person of author that I am familiar with. You should write a book on this disease with your perspective. No joking here, you have what it takes! Has your home been modified to help? What assistance do you have? Hopefully, you are not one of those independent stubborn types who won't accept help. With your symptoms and struggle, it will not be long before you have to change some things. What do the Docs say about your curling? I ate the bannana with peel (left a lingering aftertaste):) Richard
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granniDJoined: 21 Oct 2007Posts: 38Location: Calgary Alberta Canada
Posted: Mon Nov 19, 2007 6:02 pm Post subject:

Richard, MY God man you are brave and so in touch with the "real things" in life. I can't tell u how much I connect with your words and feel ashamed of myself for whining and being a sissy. Thanks from the bottom of my heart. I wish your strength and courage and all the love of everyone that knows you will continue to carry you on through the rest of your journey. GranniD
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cowboyJoined: 03 Oct 2007Posts: 121
Posted: Mon Nov 19, 2007 6:14 pm Post subject:

Thank you GranniD. I appreciate your encouragement and kindness. I read your posts and have not heard a single whine yet!! You have discussed symptoms of Parkinsons everytime. How are you doing this fair Monday?
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 6:25 pm Post subject:

eh????? cowboy...............why are you answering for richard? confused pokermid
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leonardJoined: 04 Mar 2007Posts: 150
Posted: Mon Nov 19, 2007 10:27 pm Post subject:

Richard...I had a friend who had PSP. It truly is a devastating illness and I have a feeling of whagt you're dealing with...the WAY you're dealing with it is a model we can draw on to deal with what we have. You live your life with great purpose. I am grateful for you sharing that with us. Leonard
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Tue Nov 20, 2007 12:43 am Post subject:

To conclude. It has always been easier for me to rise to a standing position once I've made it to my knees. Off the side of the mattress I can stand up, make use of the urinal with some difficulty and from there decide if I'll be up for a while or try for another sleep segment. I take very few Ambien sleeping tablets so this decision usually turns on if I took one 3 hours earlier and it is providing drowsiness or if there is something I want to do or need to do in which case I start the active part of my day. If the latter I'll start the very slow shuffle to the staircase by basically falling and catching myself by right arm at key points. I have the perfect house for this. A forward step is about 1 to 3 inches. Descending the staircase is ok but I creep into the living room. I never fall but your cautionary advice is well taken. My first morning pill has its most dramatic impact if I avoid food until it takes hold. Generic 25/100 Carbidopa-Levo tabs last about three hours each until 1:00 pm. Then shorter and shorter intervals and an Amantadine at around 3:00 PM to smooth out a little of what otherwise becomes quite bad flailing about. A second Amantadine seems to help nowadays. Azilect is discontinued. From 4 to 8 or 9 pm is MISERY writ llarge. I kinda nibble pills on an as needed basis or descend into alot of pain...and really do in any case. Neck twisting and head to one side, breathing difficulty due to tightness originating in solar plexus area. By later evening I settle down quite a lot. But during that horrible stretch things are not good here. During this period The News Hour With Jim Lehrer comes on PBS. At 6:00 PM on one station and at 7:00 PM on another. Same show. I used to watch it once and get 100%.. Now I watch both shows and get a total of about 75% because my mind wanders so much. Fortunately it wanders to the most pleasant thoughts. Or at least satisfying ones. Never any hallucinations or panic attacks. No forgetfulness. But my ability to maintain concentration during this period is quite simply gone. Mental health is otherwise sound I like to think :-). Not sure what you mean by curling. Only curling I have is sometimes when sinemet kicks in and my toes curl. I think most people have this when wearing off. Neurologist has not told me that my PD has become PD-plus. She says she is checking that when she evaluates ability to move eyes/gaze up and down. So that about sums it up here. I'm happy to have shared a glimpse of things I deal with and hope it can serve some positive purpose for you Richard, and anyone else who passes this way. Roger
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