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MyNexus2U

Member
Joined
Mar 9, 2016
Messages
19
Reason
PALS
Diagnosis
05/2016
Country
US
State
Oklahoma
City
Tulsa
To those people that know me are well aware that there is no road that I will not take for a good laugh. I have been passing along Chally stories for weeks. I entertain my family and friends on Facebook with little clips from my life and experiences with ALS. There is nothing sacred with me. It is taking me a while to write this because I am playing with my granddaughters ages four and three. I am so lucky because my son and his family live with us. He lost his job in December and were only renting so it was the best for all involved. My wife and I have a large six bedroom farm house that has been in her family for almost a hundred years. His wife and my wife work and he is a stay at home daddy for now. He takes good care of his girls and helps me to. We have some idea of what is coming with me so this is a good situation for us now.

Anyway the girls and I have been playing. The have a retractable dog lease attached to my manual wheel chair and are dragging me all over the house. They are running, yelling, screeching, and screaming. I am amazed just how strong they are. We may have knocked some paint off the door facings in places but that can be fixed later. What a wonderful time that we had and yes they finally tired out or it may have been the snack that was offered instead.

Now back to my neighbor. As with any terrible disease eventually the discussion may turn to final arrangements. This too will happen even with people up in their years. Before I go much further I have to state that I am constantly pranking my wife and kids. They do give as well as take. It was during this discussion of final arrangements that cremation was brought up as an option. I had never really thought about this. I have a advance directive and have left the issue of a PEG and invasive ventilation open as an option at this stage. My oldest granddaughter goes through pop corn by the truck load so it is always bowl of it around somewhere. During this discussion my loving son says "hey mom, when dad is gone do you think that we could get a bunch of pop corn down dads feeding tube?" Now as morbid as that may sound to some I took the bait and ran with it. Back in the day we could buy Jiffy Pop pop corn. Of course that was before microwaves. Could you imagine the reaction of the technician in the crematory when I went off? And to top it off the bad smell of burnt pop corn to boot! My granddaughters call me Poppy so now to the grown ups I go by Jiffy Poppy. When I told my neighbors the story they were laughing so hard that they were crying. Until next time...

Bryan:shock:
 
That is the BEST! Sadly, my family and friends don't find such humour funny- I think I like yours more. Sounds like you have some fun worked out...
I once read something similar about a man who wanted to have a closed casket funeral with all the requisite bouquets, service and memorabilia. The music he wanted played was "Pop Goes the Weasel", while everyone at the service waited in horrified anticipation for the song to end.
 
I love your humor Bryan. Thanks for making me smile.
 
Bryan, you are hilarious!

My husband jokes about getting a feeding tube and turning it into the worlds nastiest squirt gun.

Ugh!

Jiffy Poppy...I love it.....


becky
 
ShiftKicker,

I love the idea of pop goes the casket and I am very open to suggestions!


Becky,

Now that nastiest squirt gun idea has some potential. I have a few in mind that would make good targets! I will be getting a PEG soon so if your husband has worked out the details of this potential weapon please send them along.

My wife and I went to our local support group last night. It was only our second meeting and unfortunately there were too many new faces. Like the rest of you I am positive, I hate this disease! I have resolved not to go quietly as I am a soldier at heart. I defeated ALS moment that I was diagnosed, it has no power over me. The end will come for each of us and for me it could still be a car wreck or bolt of lightning. I hate the disease most of all because of the CALS, family, and friends that get so worn out from the physical and emotional stress from taking care of a PAL, not to mention the heartache of watching someone near and dear to them battle this disease. I helped my father care for my mother only a short while before she passed from COPD. That very brief experience makes me more appreciative of what you do for us. There are not words in any language to explain my gratitude and thanks. I am still early in my battle and PALS and CALS are near and dear to my heart, the ones that I have met and the ones I never will. We are truly an amazing group and you guys are in my thoughts always.

Bryan:)
 
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