Intro: Mary & Wayne

CtWayne

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Jun 18, 2019
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4
Reason
CALS
Diagnosis
09/2016
Country
US
State
CT
First post after I signed Mary my (pals) up and have been reading your posts, I may cry, really for the first time, Wow people who are living the same nightmare and actually understand. We are almost 3 years till we knew something was wrong and then a month of Dr"s and finally emg and nerve conduction led to diagnosis.

We got the diag. pretty quick cuz get this, first husband passed fm ALS 12 years ago, so we knew what to look for in the beginning and unfortunately at the end too. What are the odds all in our ALS sphere say including NC, AZ, CT, & RI clinics , oh and a short trip to a VT Neuro to consider Death with Dignity there, that no longer an option at near hospice stage here in CT. Fisrt drop foot and see DRs in NC then move to near family (as Im sure many of you know) in CT/RI,

Now no legs for 1.5 yrs Arms down to weak hands that cannot eat or scratch face. Breathing 50% cough assit. Bi-PAP ordered. Nebulizer, Eating OK. Speech change about 3 weeks now. Working on help like Alexa, voice banking, a touch sreen stylus, Elec WC of course. But , and sorry to those that disagree , she does not want to die like Bobby did, we were there. But what choice do we have, in this State waiting for this slow motion Tsunami wave to drown us.

So the upbeat side is we love to eat, Well who doesnt right so we are enjoying cooking on a new griddle-grill, eating out . I built a deck that looks over the back yard and a pool that has a slide from the deck, I haul her back up the slide with a boat winch, What a trip. well keep your chins up gang thx wayne
 

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vltsra

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CALS
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11/2015
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US
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CA
Hello Wayne, sorry to welcome you and Mary. Glad there is an "upbeat" side! My PALS just started on the BiPap 2 months ago and it has made a difference for us, his breathing and mental state is a little better. You mentioned first husband with ALS, is it familial?

V
 

lgelb

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V, I think Wayne is saying that Mary's first husband had ALS, so that would not be familial.

A sad welcome, Wayne. Practically speaking, choices as to the day and manner of Mary's death are still yours if that is what you both want. The options are (1) she is enrolled in a hospice that understands and is willing to back your priorities, or (2) there is an appropriate advance directive and a physician knowledgeable enough to sign the death certificate.

Nice deck!

Best,
Laurie
 

affected

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Sorry to welcome you Wayne and what a history, life is bizarre.
I will say there are still options, we can all talk about that more as you settle in here.
 

CtWayne

New member
Joined
Jun 18, 2019
Messages
4
Reason
CALS
Diagnosis
09/2016
Country
US
State
CT
Hello Wayne, sorry to welcome you and Mary. Glad there is an "upbeat" side! My PALS just started on the BiPap 2 months ago and it has made a difference for us, his breathing and mental state is a little better. You mentioned first husband with ALS, is it familial?

V
V weirdly no not familial it was her husband and not a blood relative, I think, they may still marry their cousins in RI tho ! :) She is a sporadic case and his was too but National ALS as well as all the Drs & Rns find it a bad coincidence. Thanks for the welcome. Getting BiPap soon.
 

CtWayne

New member
Joined
Jun 18, 2019
Messages
4
Reason
CALS
Diagnosis
09/2016
Country
US
State
CT
V, I think Wayne is saying that Mary's first husband had ALS, so that would not be familial.

A sad welcome, Wayne. Practically speaking, choices as to the day and manner of Mary's death are still yours if that is what you both want. The options are (1) she is enrolled in a hospice that understands and is willing to back your priorities, or (2) there is an appropriate advance directive and a physician knowledgeable enough to sign the death certificate.

Nice deck!

Best,
Laurie
Hi Lauri thanks. So yeah we have Hospice lined up and the will and advanced directive done and she is OK with that.
 
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JimInVA

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May 29, 2014
Messages
775
Reason
CALS
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04/2014
Country
US
State
VA
Greetings, Wayne. Love the deck! What a wonderful place for you wife to relax. And WTG on being creative with the slide and boat winch. Overcoming obstacles has been a source of accomplishment and laughter for Darcey (PALS) and myself through the last 6.5 years. I hope you both find life a bit of comfort in your participation, here. We get it. And sometimes that can go a long way.

My best to you both...

Jim
 
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