Good to know! I will pass that on to my daughter.
Missed the edit: the state refers consumers to pre-approved brokers, at least in Washington state.
Hopefully you have joined more specialized forums such as
or others at
https://www.google.com/search?q=als+forum
With regards to a van, search Craigslist–both the local Craigslist and surrounding areas for terms such as “mobility van”, “handicapped van”… You will find van a lot cheaper than the $10,000 you mentioned–mostly from private parties. [Get someone who knows about vehicles to check them out]
Do a search for ALS at Gofundme as well as a Google search:
site:gofundme.com als
to find successful fundraisers and pick some ideas from them
Since you have been a member here for 10+ years I encourage you to message the mods to request that they allow you to post your Gofundme request here.
Thank you PastTense. I am in three FB ALS groups. The others I will look into.
My daughter and sister looked through the GFM site for suggestions before they wrote it up and started it.
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. Do I message any mod?
PastTense is correct in that you if wish to appeal to the users of The Straight Dope you need to run that request by the moderators first. We must approve all such requests in advance. This is not a value judgment on you or your situation; we ask everyone who wishes to place fundraising/crowdfunding proposals before the community clear it with us first.
You can send email to me to start this process if you prefer and I’ll take it to the mods for discussion. You have so far operated correctly in regard to what happens here and you are fine.
I am sorry to hear about your situation; even MS is no party. I hope you can get the assistance you require and have what you need for best outcomes going forward.
Jenny
your humble TubaDiva
Administrator
Can you still type? You might be able to use a TTY service, designed for the deaf but if an organization deals with ALS, they will be familiar with patients like you.
I did a GFM over the summer for my friend who had heart bypass surgery. She’s a waitress and missed a ton of work, which meant a ton of money, and we asked people to chip in to cover the loss. It was fairly successful - we had a goal of $8k and ended up with about $6k. We just used Facebook and word-of-mouth to get it out there. Between us we have a lot of friends.
One thing I did was I used VistaPrint to create business cards asking people to donate. Something like “Show your love for Friend” On the back I put a QR code that was a link to the GFM page. I figured if anyone asked about Friend at her job (she had a lot of regulars), they could have a card and quick access to the fund. This way the info didn’t go in one ear and out the other, and using the QR code they could quickly get to the fund without having to type anything in. I did also put the URL of the fund for those who would be accessing via computer instead of mobile.
I don’t think anyone actually ended up using the cards. Either her co-workers didn’t pass them out or people didn’t ask or they just didn’t want to donate. But it cost me $30 for 250 cards and was well worth the investment.
It might be useful for your campaign, if people are asking your family how you’re doing. Your family and friends can say “oh **txobbin **is keeping good spirits and working hard to keep functioning, but we’re really in a spot trying to get their home prepared for the inevitable changes they’ll go through. It’s going to cost a lot. In fact, we started a fund. Would you like to know how to donate?” You can briefly put the goals of the fundraising on your card (remember they can read the full description on the GFM page) with the QR code and maybe you’ll be more successful with them than we were.
I think a nice succinct business card is a good response to “let me know if there’s anything I can do!”
At our first ALS clinic the Tobiidevice was mentioned, and the rep was supposed to follow up in our home but he hasn’t done so yet. We have it on our List of Questions for the next clinic in February to pursue it further. I can still type but the issue is my neck muscles holding my head up. On my power chair is a headrest to hold my head still.
**ZipperJJ **and all you others, thank you for the great ideas and support. I sent a link to this thread to my daughter and sister and have encouraged them to read it.
Are you a member of any organization where the members have home repair skills? If so, reach out and see if anyone would be willing to help make some of the modifications you need to your house. You may be able to get a significant amount of labor for free, which will make the funds you have go much further. Even if you have to hire a general contractor to oversee the work, the free helpers may be able to get a lot of the grunt work done.
You mentioned a roll-in shower costing a lot, but I see a lot of homes with walk-in showers which are basically open on one side. They may have little or no lip on the bottom anyway. You might be able to design something like that which is still a typical shower stall but would also be wheelchair accessible. That might also save on cost since you won’t need a specialized $2000 stall.
Home repair TV shows sometimes do these kinds of upgrades. Check and see if that’s an option in your area.
Also reach out to your local NextDoor page if you have one. If you’re not aware, NextDoor is like a social media site for neighborhoods. You can post that you’re looking for someone to do reasonably priced home modifications to help with your condition. It won’t be unusual for some of the neighbors to volunteer to help with the work.
Once you go on SSDI you automatically qualify for MediCare regardless of your age (although there’s a two-year waiting period). So at that point, you shouldn’t need to pay for COBRA. You should also look to see if you’re eligible for Medicaid as well. If you have both of them together (so-called "Medi-Medi’) you might have very good insurance coverage indeed because anything that one ‘Medi’ doesn’t cover, the other one will (this varies from state to state). In California for example, “Medi/Medi” ends up covering pretty much all medical, hospital, ER, laboratory, prescriptions, dental, optical, ambulance, and more. Though there is usually a Share Of Cost and the rules and coverage can change from month to month.
My initial diagnosis was PPMS which qualified me for Medicare after the two year wait. When I was rediagnosed as ALS, the waiting period was supposed to be waived and we are working on it but government red tape can be frustrating. The lady at the SSA said she would expedite my case but we haven’t heard back yet. I do not qualify for Medicaid.
As a matter of fact, one of the links **PastTense ** provided did lead me to knowledge of how Medicare may pay for my PEG tube formula, which is the only way I get nutrients now. Along with my speech, I lost swallowing capability. That could potentially save us $300 a month, my current insurance doesn’t cover ‘food’. That money could go towards paying a loan for remodeling. Which Medicare does *not *cover, hence the GoFundMe.
I am blessed to have wonderful support from my family. Another sister put my daughter in touch with someone who might can help us do the bathroom refit for a lower cost. They will soon come give us an estimate. A full size 60x33 roll-in shower will help tremendously in bathing me. We will look at costs for buying a prefab stall vs tiling it in.
I am sorry to hear about your ALS. I am glad you have a supportive family. That makes a big difference.
I hope you are getting top-level advice about healthcare and other forms of support available from the federal, state, and local governments. An ALS diagnosis should bring with it more attention from government programs because of it’s severity and impact, IMO.
There can be Medicaid considerations even if you do not currently qualify. For example: “spending-down” so that Medicaid may pay part of expensive, long-term institutional care should that become necessary.
Likely, you already know this stuff so I’m just throwing it out there FYI.
ETA: In regards to a GoFundMe, perhaps you’ll have more luck if you made it about your food. That while you have some support for your actual healthcare, it is a challenge to pay for something as vital as your nutrition.