Amyotrophic Lateral Sclerosis (ALS)

Parent Q&A

  • ALS diagnosis -- support, advice needed

    (9 replies)

    A neurologist has just diagnosed me with ALS, pending confirmation from an ALS specialist.  But I fear it is all but certain.  Unfortunately, my husband has been struggling with debilitating depression for some years and it is pretty bleak for him already right now, I don't know If he has the strength to take charge  I have not told anyone yet, not even him (although he knows about all the doctor visits and tests I have had, I am waiting until the end of the week when I see the specialist).  One daughter is working on her college applications right now, I am pushing her to get them done soon, before we start planning how we will handle this devastating development.  Our older daughter lives and works in the area, but stays with her boyfriend because of the pandemic risk to us as older parents.  I am going to need a lot of help to get things organized and figure out how to get the care my family and I need.  Open enrollment through my husband's university is soon, and I may want to change plans.  We also need to organize our finances, create an estate plan, make financial and end of life decisions, etc.  I am looking or any advice or recommendations anyone can offer:  who can advise us on the health insurance decision?  review finances with us and educate our daughters so they will be able to handle household finances as needed?  help find caregivers as needed?  This is all so much harder to contemplate trying to manage during this damned pandemic.  I'd love to hear of any local support groups -- I found some on Facebook but that is a little too public at this point.  Thank you for sharing any wisdom and experiences you may have to get me started on this unwelcome path.

    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.).   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.   (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  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 ♥️