Where to live

[Sppspp10]

My husband and I are wondering where we need to be for the next few years. Of course we would love to stay where we are (in Seattle) but the home isn't very ADA friendly, and we don't have family nearby. There are ALS clinics here, though.
Our main alternative is to move to Atlanta where we have some family. We figure that we will need a certain level of care that might be too much for friends. It also allows our children to have that family support as they transition through hard times. And while Atlanta has Emory (by the way if any of you have positive/negative experiences to share with Emory, please do!), I am nervous about the culture shift. For example, I know that while Washington supports medically assisted deaths, Georgia does not. I don't know for sure that I would want that service, but I like living in a place that is friendly towards those types of rights.

I guess my question to you all is, have you moved or considered moving after diagnosis? What was key to consider? Regrets? Advice?

Thank you all as always for your help and comfort.

 

[Marieb425]

We were/are in a similar situation with no family nearby and young children. We decided not to move and it was my PALS who felt strongly about that decision. If I felt we had to move then I would have, but I also wanted to honor his choice during a time when he was losing so many things.

However, our decision might be somewhat unique as we had already moved our kids somewhat recently - a year prior to his diagnosis (still in the PNW - from Seattle to bainbridge island) and they were settling in with friends and were happy with the schools here. Also, our house here happens to be ADA friendly and it didn’t require any major modifications or renovations …

It is possible for family to move to be near you? My parents stayed out here for about 6 months after the diagnosis to support us which was helpful. My mom has been flying back and forth every couple weeks now and there are pros and cons with that.

The DWD option is important to my husband too. I don’t regret not moving but it has been challenging at times.

 

[Nikki J]

I can move this to general if you also want answers from CALS. Only PALS can answer here. Lmk

Whatever you decide it is best to do a move whether local or cross country early so it is smart to consider now.

I don’t remember how old your children are. Moving can be traumatic as well depending on age.

Realistically how much help will your family be? Sometimes a lot but not always

 

[Sppspp10]

Oh yes please move
The post. Sorry. Only joined a few weeks ago and learning how to use the forum

 

[Nikki J]

No worries. Know it is confusing

 

[Sppspp10]

I also moved in the past year but within Seattle. The kids (ages 7.5 and 4.5) have been at the same school for 2 years and they love their friends and school. We absolutely adore the elementary school and have plans for middle and high school, which are scary to give up for a lot of unknowns across the country. But the girls' ages seem reasonable for a big move...4.5 year old will have to start kindergarten at a new school anyway, and my 7.5 yo makes friends easily (of course I don't doubt that she will mourn a lot as well).

I think it's possible to have family swoop in to Seattle for a few weeks at a time to help. Maybe between that and a caretaker, my husband will be able to handle it all. Our family members are likely (fingers crossed) to be actually helpful...we have two middle aged healthy adult family members that will likely be the most dependable to come several times a year for weeks at a time and get to work!

Our parents are themselves aging but I think able to come for several weeks out of the year for the next 2-4 years. I also have my closest girlfriends from all over the country ready to support (maybe 4 times/year). As I type this out, Seattle feels more and more VIABLE (with a heavy "it takes a village" approach), but I wonder how much it actually competes with having three family members available to help my husband on a day-to-day basis. These are family members that would not hesitate to wipe my ass, and it would relieve (no pun intended) my husband's burden a lot to have them in the rotation. Staying in Seattle would allow continuity, same friends/school/network, just a lot more visitors and busy household vibes. Big decision when I am already overwhelmed with a lot of other decisions! Thank you in advance to anyone with wisdom on this.

 

[lgelb]

We moved here about a year and a half after my husband was diagnosed so that our adult son could live with us. (He would have moved east, but it seemed silly to move him out to a snowier locale when we were heading into the need for a power chair.)

A DIY DWD death is possible anywhere in the US, most places in the world. Any clinician can write opioids for "air hunger."

And of course ATL is pretty liberal compared with some other Georgia areas, from a cultural standpoint. I have known PALS there but they are gone now. Hopefully some can chime in, but you could also reach out to ALS United of Georgia/Emory and get a feel.

My husband and I did not receive any care support from family here apart from our son, and that is pretty common, I wouldn't count on it even if you move, tbh, but emotional and logistical support for the kids is of course worth considering from the ATL vs. SEA standpoint.

Comparing ALS clinics generally isn't a reason to move or not, except at the very bad/good ends of the spectrum. Docs come and go. Academic medical centers, at which I've worked, shuffle leadership and adjust budgets. And I suspect there are significant changes ahead for the ALS ecosystem.

I would look at the whole picture -- where you want to be for the rest of your life together. Seattle certainly has ADA-friendly options for sale or rent. We rented for the duration of the ALS years to be downtown with easy concert/museum/movie access and close to transit (we did not have an accessible vehicle) and that worked out pretty well. Of course, it's different when your kids are young. Let me know if you have any questions from the Seattle side.

 

[Unsteady Betty]

I just wanted to say hi! I saw that you that you and I are around the same age (I’m 44) and you live in Seattle.Im not too far away, Puyallup. I was also just recently diagnosed. It feels absolutely insane that this is my reality, 44 with a fatal disease. Idk if you have heard of Her ALS Story but it’s an amazing group of young woman and men diagnosed with ALS. They recently changed the age parameters to 45 and under. It’s an amazing support group. We have a group chat that honestly a hoot but more than anything a great support system. Anyways, I just wanted to pop in and introduce myself, I rarely see anyone else around my age that lives in WA who also has ALS. If you are interested in joining Her ALS story let me know
Oh, I wanted to ask, are you being seen at UW? I only ask bc I’m considering transferring care and I wasn’t sure how that clinic is. I’m currently being seen at OHSU in Portland and it’s a 3hr drive! OHSU is amazing and I love the clinic and staff but ooof that drive is a doozy.

 

[Sppspp10]

Hi @Unsteady Betty ! Totally hear you about the insane reality. I messaged Her ALS on IG. Would love to get to know others there. I don’t get care at UW but am being seen there in Jan. May transfer care to them. I can report back!

 

[KimT]

Atlanta is not a bad place. I have many liberal friends there. Of course, it will be warmer and less expensive than Seattle.
You're right about the need for support. Maybe talk it over with your children.

Whatever you decide, do it early. Moving and remodeling are hard, even on healthy folks.

 

[dbel]

We moved from a two-story house to a house with primary on the main with a daylight basement We moved 5 minutes away so my teen sons could stay at the same school. I remember it took a while to find something that met our needs. I'm not sure how available accessible homes are in Seattle but I found them hard to find in South King County/North Pierce County. I'm glad we moved early in my diagnosis.