Because the discussion is in a thread titled:http://boards.straightdope.com/sdmb/showthread.php?t=888968
I feel that many people here may have missed it:
My symptoms have worsened to the point I must now live with my daughter.
I was diagnosed with MS last year, but after a drastic turn for the worse and a new neurologist, I was re diagnosed with ALS. The two diseases have very similar symptoms and diagnosis is actually a process of elimination. The general lifespan prognosis is 2-5 years, but with advances in medicines and treatments, more and more ALS sufferers are living beyond that, some ten and even 15 years.
With that in mind and hoping I do see several years, we want to remodel a bedroom and need to remodel the bathroom for a roll-in shower. The shower stalls themselves generally start at $2000 so add other parts and labor to that. Wheelchair adapted vans start at $10,000 used.
My sister started a GoFundMe account that has brought in a generous $1375 that I feel blessed to have received…
The bathroom remodel and a handicap van would make caring for me much easier for my daughter, a single mom raising two kids…
My SSDI checks barely cover living, medical and caregivers expenses for me. Cobra payments take up nearly half, and insurance provides for twice weekly baths but not daily care, we are paying out of pocket for what we can. I hope to get thru the red tape and get on Medicare soon. And then I hope the difference in coverage does not eat up the savings in premiums…
As I have Bulbar Onset ALS, I can no longer speak…
I have considered a request to post my fundraiser here. I am a lurker with under 100 posts in these 11 years, not well known, but it’s worth a shot if they will allow it…
Thank you PastTense . I am awaiting mod approval to post my GFM here.
You all gave me some very good advice and links in that thread. I checked them out and we are pursuing several avenues. It was a great way to introduce my daughter and sister to the board. They were both impressed with the knowledge and caring of The Teeming Millions.
skyr
January 30, 2020, 3:29am
3
I am sorry that you are dealing with this, txobbin . I am sure it is very difficult to advocate for yourself when the illness that is causing you to need help in the first place makes so many ordinary tasks so difficult.
txobbin:
Thank you PastTense . I am awaiting mod approval to post my GFM here.
You all gave me some very good advice and links in that thread. I checked them out and we are pursuing several avenues. It was a great way to introduce my daughter and sister to the board. They were both impressed with the knowledge and caring of The Teeming Millions.
Did you join any of the discussion boards? There are lots of people there who have had the same issues you have and could give specific advice, unlike Dopers who could only provide general advice.
Have you heard back from the Mods?
I wish you the best.
PastTense:
Did you join any of the discussion boards? There are lots of people there who have had the same issues you have and could give specific advice, unlike Dopers who could only provide general advice.
Have you heard back from the Mods?
I wish you the best.
I did join two. Those plus the ones I am in on Facebook do give great advice, plenty of discussions on solutions to various problems. It’s helpful to have several options, as what works for one doesn’t necessarily work for another. It’s a funny disease that way, with the rate of progression varying wildly.
**TubaDiva **and I have exchanged emails, it’s still making the rounds with the mods.
Thank you.
Is your contact information up to date? I sent an email, but no answer.
A recent update from her daughter at the GoFundMe site:
Second ALS clinic in the books! Mom got a good report we’re pretty much doing all we can do. To update everyone who has text or called, our main two goals right now is to remodel the bathroom for a roll-in shower and to purchase an accessible van for her power chair. She has lost the ability to hold her neck up making it difficult to stay in an upright position and is no longer able to walk even with a walker. The shower will allow for her to have a reclining shower chair and the time is coming to where she won’t be able to transfer from chair to car seat. One of the key factors to living with ALS is to make her quality of life the best possible. Good news is she is maintaining her weight right over 100 pounds! This is a huge accomplishment. Thanks to everyone for your support and prayers❤️ I’ll try to do better with updates!
txobbin’s GoFundMe request is at:http://boards.straightdope.com/sdmb/showthread.php?t=889568
An update from her daughter at the GoFundMe site:
The bathroom renovation has started!! We ran into a couple of hiccups but hoping to have it completed this week. Mom is ready Kinda Glad I never got around to remodeling my bathroom before this, haha! Next big goal is to purchase a van! Thank you all again for your support and love❤️ One day at a time, one step at a time.
txobbin’s GoFundMe request is at:http://boards.straightdope.com/sdmb/showthread.php?t=889568
Txobbin passed away in September.
“Evelyn Roth Winkler, 60, of Hooks, TX, formerly of Paris, passed away Friday September 11, 2020 at her home in Hooks, after a courageous fight against ALS with family surrounded by her side. Her smile will live on forever.”
Here was her Straight Dope Gofundeme request:
I have asked for and received permission from TubaDiva and the mods to post this. Thanks, mods!
I have a previous thread here: Advice on making a GoFundMe successful please?
Two years ago I began having health issues that eventually led to the diagnosis of Bulbar ALS last October. This beast of a disease has robbed me of my speech, my swallowing, my walking. I need assistance bathing. I have a power wheelchair that insurance bought but am stuck at the house with it.
A GoFundMe campaign has b…
asahi
November 24, 2020, 12:33am
10
My condolences! I am sorry for your loss.
Oh no, I was just thinking about her today. So sorry to hear this.
This year just keeps getting worse.
RIP, txobbin
StG