ALS diagnosis -- support, advice needed

First, I am so sorry that you and your family have to navigate this. This is the first time I've responded to anyone on BPN, but I saw your post and thought of a financial advisor we are setting up our finances with. I thought of him, because he just mentioned to us that one of his clients told him a few weeks ago that he too was diagnosed with ALS and the advisor was helping him and his family set up all that you've mentioned above. 

His name is Ryan Alessi, he works at Morgan Stanley in Cupertino. HIs number is (408) 861-2046. We've been doing all of our stuff remotely/Zoom and it's been great. He helped his client get set up on Estate Planning, etc. Hopefully this helps! 

So sorry to hear of your diagnosis!  And I'm sorry that your husband isn't fully "available"-- right now-- to embrace you.  But, perhaps he will.  But if it doesn't happen, ok. If you have a spiritual path you feel comfortable with, perhaps you'll want to touch base with that part of your life? 

   My mom, long-time Christian--even set up the church in our small Tex town & then arranged for a pastor to come & attend to it, YET 2 wks before dying she confessed: "I never believed."  After convincing me she wasn't kidding,  I helped her learn to do 5 min meditations-- no mention of God or Christ, nothing-- yet, she focused on a Mr. Lincoln rose. When she died about 2 wks later Mom was transformed. Utterly beautiful & kind.

---  Would husband  do  couple's therapy with you?  Will you do therapy alone?   We set up a trust while still living in Austin, Texas.  For here in CA, we highly recommend Matthew Scott Crider (lives in Woodland, CA). Matthew is dear friend from Austin, TX (when we set up trust, he was already practicing in California.).  https://www.criderlaw.net/about/team/matthew-crider/   This is a person you can trust completely, plus he is very detailed oriented.

For financial matters, we have another friend:  Jim Kelly, financial advisor. He's still living back in Austin, Texas, but is licensed to practice in California as well.  http://www.jimkellyinc.com/   (Always consider the % that an advisor takes .... the local Edward Jones company, for example, takes a lot-- imho.   :((        In both cases, we've known these 2 men for 15 years (with Matthew it's actually more than 20 years).  What about checking with a local hospice group.  I recommend Pathways in Oakland.  They were peerless helping my friend's family, before he passed away, after and even now.  Perhaps they can suggest person(s) for home care (and of course with free bereavement care for your family). As a former volunteer with hospice, I consider it an amazing organization, especially when operating under the original charter-- as Pathways does.  As for in-home care, I suggest you consider looking to the Tibetan community.   It seems Tibetan Buddhists are born with something very special in their hearts.  At the present I don't know of anyone specific that might be of assistance, but check with   https://www.tanc.org/#/  PERHAPS they know of someone, who's part of their spiritual community, who knows someone.  Maybe you'll want to read ?  Stephen Levine's book:  "Who Dies?"  I read  when my mom was dying and now as my elderly husband grows weaker (he survived one kind of cancer- 109 days in Summit hospital--  now lives with another, refusing treatment---  I'm about to read it again.   

 Lastly, dear, dear neighbor, please take time to sit quietly, even 5 mins here and there.     Maybe you'd like to read Pema Chodron's book, "Welcoming the Unwelcomed".  Big hug dear person whom I haven't met but care deeply for.  

Dear I am so sorry you’re going through this. I don’t have any personal experience in this regard, but will pray for God to give you and your family the strength to go through this ♥️

I am so very sorry to hear about your diagnosis.  I don’t have referrals for your diagnosis, but wanted to let you know that I believe you may automatically qualify for disability benefits.  I believe an ALS diagnosis may qualify you for the “fast track” approval.  This website may be of help (and I’m sure there are others as well); best of luck to you. https://www.disabilitysecrets.com/resources/disability-benefits-amyotrophic-lateral-sclerosis-als.htm

I'm so sorry that you are facing this diagnosis. My mom passed away from ALS 13 years ago, when I was in my mid-twenties, so some of my information is perhaps a bit outdated but I'd be happy to share more details about what my family did.  In terms of caregiving, we used both paid caregivers (two wonderful women we hired who provided tremendous support to my mom and my family) and a circle of friends who made a schedule (in the face of serious illness you quickly learn who you can count on). I'm also happy to share what we did in terms of mobility logisitics, minor but important modifications in our house and the other things you mentioned above if you'd like to get in touch (now or at some later time).  I recommend finding an ALS support group through the ALS association Golden West Chapter. There are meetings around the Bay Area and you will be able to get a lot of practical information from there as well as emotional support. We attended a family one in Walnut Creek and it was immensely helpful. I think there are a number of support groups for spouses/caregivers only as well and if your husband isn't able to take charge of everything that is needed, I'm sure you'll find other families struggling with the same thing. It will be harder for your daughters to find support. It's an isolating experience dealing with the serious illness of a parent at that age because it's mostly not something your peers have experience with or can relate to but if they are willing, the support group may be helpful for them too. It looks like they are still meeting but it's on Zoom these days. My mom had Kaiser insurance throughout her illness and we found the care and services to be quite comprehensive and good. Through Kaiser, my mom was also seen at the Forbes Norris Center in SF.  For financial planning, I think any estate planner worth their salt should be able to advise on these issues and I'm sure there are lots of recommendations for financial planners/estate planners on BPN. 

First, I am so sorry to hear of this situation.

Second, please know that there are different types of ALS and progression of the disease, so hoping that if you are in fact diagnosed with ALS that it may be a less aggressive form, or at an early stage.  

Third, even with the most aggressive forms, your attitude and support systems can make a huge difference in terms of quality of life and beating the odds on the "expected life" timeframe that a doctor gives for your type diagnosis.  For example, my mother whose diagnosis was one of a very aggressive progression of the disease and whose doctors believed she had a very short life expectancy time frame, outlived her expected time frame by 3 times what she had been "given" because of the great care and support she had from family.

Fourth, there is medication that can support the slowing of the progression of the disease.

Finally, though I am not familiar with resources available in the Bay Area, a google search turned up the following link: http://webgw.alsa.org/site/PageServer?pagename=GW_1_about_als#gsc.tab=0.  A quick review of the site appeared to show it might be a rich resource for securing some of the guidance and assistance you are looking to procure.

Wishing you the courage and strength necessary to navigate the diagnosis and challenges of securing the best care and support that is right for you and your family.  I do hope your husband, kids, and any other family can come together to provide you with the support you need to make the coming journey more easily navigable.  With all my best. 

I’m sorry to hear you received an ALS diagnosis. I recommend that you apply for Social Security disability as soon as possible. You can apply online. There are special rules for ALS cases that allow for a quicker decision and access to Medicare benefits with no waiting period. To help choose an insurance plan to supplement original Medicare, you would contact the free counselors at HICAP, the Health Insurance Counseling and Advocacy Program in your county. Best wishes during this difficult time. 

I am so sorry about this news, I am a social worker who has worked with ALS patients. I would recommend going to an ALS Center (such as UCSF, CPMC, or Stanford) to get the best care possible. They all have multidisciplinary teams that can help navigate all aspects of the challenges of this disease. The ALS Association is another good resource, as is the Family Caregiver Alliance. I am happy to talk with you further to give you more resources and suggestions!

I'm so sorry to hear of your diagnosis. I want to offer a second to the ALS program at UCSF, as a dear friend with ALS and his partner found it enormously helpful several years ago. The UCSF ALS staff is not only supremely knowledgeable, but demonstrate both compassion and kindness that are remarkable.