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What a story! God bless you, Bill. C. Menser -----Original Message----- From: Bill Lawless <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Monday, November 11, 2002 6:16 PM Subject: Re: Bill'sPD/his son's ALS Rayilyn, When Bill Jr. was diagnosed with ALS, after he confirmed the findings he called. Of course my heart sank with news. My reply was " get your self together spiritually and financially and I will cover the rest of the things" . ALS is quick, foot drop in November, diagnosis in February, unable to work by May, unable to stand alone by June, and unable to climb a stair by October. During this time we had sold his home, sold our home, bought a more ALS friendly home and moved both households. All by November 1st. After that sequence of events, it was trips to therapy, to church, etc that were somewhat taxing, because they involved lifting a 150 LB man 4 to 6 times each trip. Once the patient loses the capacity to stand by their self they must have assistance available 16 hours each day. Unlike a paraplegic the ALS person with Lower MND begins to lose upper body strength as well. Bill progressed the same as Morrie Swartz (Tuesdays with Morrie, a very accurate portrayal, except I was dealing with the details.) When most of the upper body strength was gone we had to make special arrangements for eating , drinking and written communication. Creativity is a wonderful gift in those circumstances. Like you can't lie in bed on your back with covers dragging your feet, it hurts the tendons and there is no muscle strength. You lack the capacity to move your legs, now what? Eventually you solve the problem, cost $ 0.00 creativity 100%. You can't bend over to drink and you can't hold a glass, now what ? You find a way to raise the glass. You can't hold a phone, find one with a headset. You can't write or type, learn to talk to a computer, and on and on. The prize challenge was how do you run a breathing assist machine if the power fails, and how in the middle of the night would you know if the power failed? .(At the time Bill went to Hospice he could only do without the machine for about a minute) It was quite a time we had together. Caregiving is not a job for the timid or weak. I probably could not repeat the process now, but not for lack of desire. Ole' PD has limited my ability a bit. Having that experience close up and personal makes me glad I can still drive, shop, maintain my house and yard etc. if I pick the correct time of day. I have made one concession, my wife drives when we are out together. Scares me, but I am adjusting and haven't had to carry a change of clothes yet. Regards, Bill Lawless [Ergo hoc, ergo propter hoc!] a logical fallacy. ----- Original Message ----- From: Rayilyn Brown To: [log in to unmask] Sent: Monday, November 11, 2002 2:38 AM Subject: Re: Bill'sPD/his son's ALS Bill, how terribly sorry I am to hear about the death of your son from ALS. Don't know how you do it, you with PD. I would like the world to hear and at least acknowledge your story. I feel this is so horribly unjust and should not go unnoticed. It seems like we PWP are only hearing each other and the well haven't a clue. Bill, I'm gonna keep swinging (shakily) with all I have left too. Ray ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn