CtWayne
New member
- Joined
- Jun 18, 2019
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 09/2016
- Country
- US
- State
- CT
- City
- South Windham
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
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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