ALS News Today Forums Forums Living With ALS What Things Would You Do Differently If Diagnosed Today?

  • What Things Would You Do Differently If Diagnosed Today?

    Posted by Dagmar on April 4, 2023 at 1:01 am

    For both ALS patients and their caregivers, there are times we think back to the time of our diagnosis and wish we had done one or two things differently at that time. 

    In the spirit of learning from each other, can you share one or more things you would change (and why) during those early days after being diagnosed with ALS? 

    Dagmar replied 11 months, 2 weeks ago 16 Members · 26 Replies
  • 26 Replies
  • Roxanne Kusske

    Member
    April 4, 2023 at 2:46 pm

    I would have made my husband use a voice bank, I would have made him use the eye gaze machine, even though he didn’t like it.  Because in the last few months he was alive, communication was a nightmare!  He was a stubborn man, he didn’t want to fight the disease, so it was a constant guessing game of what he wanted/needed.  I had to watch his eyes look at things to figure out what he wanted, or just keep asking him questions.  A lot of unneeded frustration, anger, and tears were a daily thing for both of us, especially him.  I miss that stubborn man; diagnosed 8/2019, passed 11/2021.

  • Mike Leist

    Member
    April 4, 2023 at 2:55 pm

    The first thing I would do is to voice bank. Nobody gave me that advice. Secondly, I would do everything possible to get into the NurOwn clinical trial, even if it meant that I would have to move.

    • Teresa

      Member
      April 20, 2023 at 5:11 pm

      How I wish we had listened to our fabulous Speech Pathologist – who visited us each Saturday morning… She is the reason my husband was even admitted to the hospital for extensive testing – she knew way before we did – and kept recommending to Voice Bank – even after the dx… We didn’t- he’s in control – but oh how I miss hearing his sweet voice!  Even using EyeGaze and our own “sign language” – it’s still the language of love.

  • Shane Spiegelman

    Member
    April 4, 2023 at 8:07 pm

    After dealing with insurance and medication I focused on dealing with the news. My Learnings on how to tell friends and family about Diagnosis.

    1-I decided to tell only close friends, that I was in regular contact with, pretty much immediately. I emailed them personally.  I didn’t want to offend anyone with unusual silence or communication patterns. I did mention the new ALS drugs for a thimble of hope.

    Friends that I  see infrequently can wait to find out about my state. No need to burden others, there is enough CrAzY in the world for people to make their way through.

    Facebook has a different camera angle. Everything is normal.

    2-I enlisted my brother who is stoic, to help me tell friends that I could not face this conversation with. I’m AOK with ALS diagnosis. I am pretty much George Bailey at the end of It’s a Wonderful Life.

    What I cannot handle is having friends and family crying. It makes me break down and I become speechless.

    My brother broke the ice. He made some in person visits to a lifelong friend, and my son who came home from college.  It was really a blessing.

    Bless to all PALS. Be Here Now.

    • Teresa

      Member
      April 20, 2023 at 5:10 pm

      Amen, Friend… I feel your tremendous heart…

  • Shane Spiegelman

    Member
    April 5, 2023 at 8:02 am

    Insurance and Medication were my first concern. Here where some of my learnings that might help someone newly diagnosed.

    1-Got put on disability and did not know they would knock me off my insurance.They say your eligible for Medicare with disability, nobody ever said you are put on it immediately. In fact,They backdated to the day I applied for disability.

    2-ALS drugs are impossibly expensive. It might be worth the wait to settle on insurance, like Medicare before ordering. I changed insurance after starting my meds and my cost per month went up $44,000 (This was under my new insurance Medicare without Part D).

    3-Once on Medicare I rushed to get Part B, D, G. Still had a gap in time and went off Meds for 30 days. I would suggest to be prepared to immediately apply for supplement parts of Medicare if that is the path for you. I planned on hiring one of the heavily advertised Medicare specialist, but they could not get me a zoom appointment for 45 days.

    4-After being on Medicare for 30 days they dropped me. One of my services (Ventilator) was not updated and confused Medicare. Recommend to Update all Dr’s and Services if you change insurance and avoid wasting energy, and losing your sense of humor.

    5-Discovered my out of pocket on Part D. Note that out of pocket amount $3,500 for me, does not include drug coverage considered ”catastrophic”. My insurance has me paying 5% of what the insurance companies are charged for Radicava and Relyvrio $1,250 a month. I think it may be to PALS benefit to know about the Biden bill passed and what it means to their cost. Next year insurance companies have to lower their out of pocket expenses for Medicare and there will no longer be charges for catastrophic drug coverage. For me this is a savings of about $16,000 a year. Clip from the NYT article below:
    _________________________________________________________________
    A kind of cap will take effect even sooner, in 2024. That’s when Medicare will eliminate the 5 percent co-pay that beneficiaries are responsible for once they pass the catastrophic expenditure threshold, effectively limiting out-of-pocket costs to about $3,250. The $2,000 cap takes hold the following year. Access to low-income subsidies will broaden, as well.

    https://www.nytimes.com/2023/01/14/health/medicare-drug-prices.html?referringSource=articleShare

    Best to all Pals.

    • Clint Williams

      Member
      April 13, 2023 at 4:32 pm

      Yes, insurance and medication were my first obstacle also. I had good private insurance that approved everything and then my company changed providers, so we started over again on approvals right in the middle of my diagnosis and start of treatment. I somehow found Synapticure and they became my noisy advocates. They’re specialists include care coordinators, neurologists, dieticians, voice preservation and AAC, geneticists, etc., etc. My guardian angels.

    • Sandra Mikush

      Member
      April 30, 2023 at 8:08 am

      I agree with others who were surprised at the downside of going on Social Security Disability and Medicare. As Radicava ORS and Riluzole came online, I was no longer eligible for copay assistance once enrolled in Medicare. The bigger challenge was that my Medicare enrollment was unexpectedly back-dated more than a year. Since my husband and I had been getting private insurance through the ACA marketplace, I technically was breaking the law by being on Medicare (ant least on paper) and ACA at the same time during the previous year. It’s been a nightmare trying to resolve this issue, and we may be liable for repaying our ACA subsidy to the tune of more than $18,000.

  • Kim Belden

    Member
    April 6, 2023 at 2:16 pm

    If I’d have know I’d survive this long, I would have taken my regular pension and not taken it in a lump sum.  That 2-5 years got me.

    I am alone.  I have no family so I had to do all my own research and fighting with LTD company.  Fortunately, I was full-time faculty at a college so I had six months paid sick leave and they let me stay on their insurance until Medicare kicked in (back then there was a five-month waiting period.)

    Instead of waiting over a year,  I would have moved to the beach immediately.

    I would have taken a trip back to the Maldives and a few other places.

  • Beth Rookey

    Member
    April 6, 2023 at 2:40 pm

    When I was diagnosed 30 years ago, there was no voice banking nor did I know that I would live this long!

    I would have voice banked my voice so that I could be understood easier. I would have looked into technology to make working on the computer.

    • Clint Williams

      Member
      April 13, 2023 at 4:41 pm

      I too regret not banking my voice earlier. It was never even mentioned by my Neurologist or anyone at the UCSD ALS Clinic. My speech was too impacted by the time I made my recordings – sounds too robotic. Now I’m working with Bridging Voice to improve on the Acapela voice that was recorded. In fact, BV is collecting old voicemails from my friends to improve my synthetic voice. No cost and fingers crossed. Record as soon as you have a diagnosis. Team Gleason will do it for free!

  • Carol

    Member
    April 6, 2023 at 6:15 pm

    I wish I knew about the Facebook ALS groups.  I was diagnosed during covid and attended ALS clinics but until I found those Facebook groups 18 months after diagnosis I didn’t know it would take my speech and swallowing and breathing; long before diagnosis I was losing use of my limbs.  It just didn’t occur to me to get educated on the internet.  But the silver lining is that from day one I’ve been preparing to die.  The medical system is doing a terrible job with victims of ALS

  • Dagmar

    Member
    April 13, 2023 at 12:21 pm

    At the very first sign of unsteadiness, I should have transitioned straight into using a rollator. Tell everyone sooner about my diagnosis – – I didn’t recognize that my friends and family would be my closest allies. They were eager to offer their support but were confused about what to do. And then, changed the way I exercised.

    I wrote more on this topic a couple of years ago https://alsnewstoday.com/columns/3-things-i-would-do-differently-if-diagnosed-today/

    • Teresa

      Member
      April 20, 2023 at 5:21 pm

      Appreciate all you do, Dagmar!  You helped me get my husband thru his 6 Mo. dental cleaning thru your blog and personal message!  All went better than expected !  Thank you!

      • Dagmar

        Member
        April 25, 2023 at 12:29 pm

        That is indeed good news! Best wishes to you both!

  • Chris Spott

    Member
    April 17, 2023 at 9:55 pm

    I would travel as much as possible before I could no longer physically do it.  Unfortunately I was diagnosed in March of 2020 when the whole world shut down.  By the time travel restrictions were lifted I was in a wheelchair.

  • Maggie Broeren

    Member
    April 18, 2023 at 7:14 pm

    Voicebanking earlier and learning how. To use The EyeGaze computer.

    • Dagmar

      Member
      April 19, 2023 at 11:55 am

      Maggie – – are you able to adjust the AI voice of your devices? Or are you not liking hearing a synthesized voice speak for you? (I’m just curious of your opinion)

      • Maggie Broeren

        Member
        April 19, 2023 at 3:57 pm

        I don’t mind the synthesized voice. The EyeGaze computer gave me many choices of voices to use.

      • Dagmar

        Member
        April 25, 2023 at 12:32 pm

        Maggie, I agree that there are many voices to choose from in all our devices. I’m waiting for a “celebrity voice” option – – my choice would be to sound like Bette Midler! haha 🙂

  • len-jax

    Member
    April 20, 2023 at 1:01 am

    I did voice banking when I was first diagnosed, but my speech quality declined rapidly. I made it 90% through the process and had to stop. The company tried to synthesize the remainder of my voice from what I had recorded. It did not sound like the me I knew.

    In retrospect, I would not have wasted time and effort even if it had been an accurate representation. Having ALS causes us to lose many abilities, sometimes quickly, and on top of other losses. Time is precious; I could have spent it more wisely.

    I am thrilled with all the voice choices I have available. The important thing is you have a “Voice,” not that it has to be yours. I have fun with it, often changing voices. I have been male, female, a kid, British and Australian; whatever matches my mood that day! I have been searching for Steven Hawking’s voice which is my hero’s. I think it would be great to be Hal from 2001 The Space Odyssey. People always smile when I start talking as it engages them in my world.

    The other thing I did not do soon enough was to switch from using a cane to a rollator. I fell about 20 times before it sunk in – good thing I have strong bones!

    That school of hard falls taught me to transition to a wheelchair sooner than later. Given my rate of progression, I thought I had about six months of walking left, so I got a power chair. I only used it at first for long excursions. Six years later, I am still walking a bit to do transitions. It is essential to get it early so you have it when you need it – the process does take time. It is also easier to learn how to use it when you have not lost as many abilities. I practiced in the garage with garbage cans, shelves, and mowers around to know how close I could get and maneuver around them.

    I chose to get one with seat elevation and standing capabilities because, at the time, I still cooked meals for us. The benefits of the standing function are: being able to use a urinal if you are male (yes, I do get looks); it just feels good to stand up; if I have phlegm stuck in my throat, it is easier to cough it out standing up, and finally, you can open the freezer doors at the grocery store!

    Len

     

     

  • Bob Kubis

    Member
    April 20, 2023 at 3:41 pm

    I was diagnosed in 2010. I wish that I had taken the time to travel at that point while I could still walk. I made the mistake of continuing to work for a few more years. Now that I am in a power wheelchair, the only trips that we can make are short drives.

    • Patty

      Member
      April 24, 2023 at 3:59 pm

      Bob, Just wondering what your symptoms were in 2010 when you were diagnosed.

      • Bob Kubis

        Member
        April 27, 2023 at 2:18 pm

        Patty – my first symptoms were tripping. At the time, I attributed the tripping to clumsiness as a result of getting older. It progressed to my right leg starting to drag when I was walking.

    • Dagmar

      Member
      April 25, 2023 at 12:36 pm

      Everyone has to make different choices; depending on our age at diagnosis and financial means. At least by working a few more years Bob, you were able to keep yourself among other people and avoid isolation.

  • Nina

    Member
    April 26, 2023 at 10:09 am

    I didn’t realize how much traveling you could do even once you’re in a wheelchair. I took advantage of the time that I could and went to see all my friends and family that were out of town and I’m so glad I did that but I could have traveled more once I was in a wheelchair. I feel like I gave up on traveling much too early.
    Having read all these comments, I am so glad that I did voice bank early on. I didn’t think it was necessary, but my sister insisted. I am still am not needing it but I am grateful I have done it.

    it might be too negative a subject, but it would be interesting to find out what other people wasted their time and money on. I would have a lot of comments on that!

  • Dagmar

    Member
    May 9, 2023 at 11:52 am

    All of your great responses inspired me to write a column on the topic… but I turned it around and wrote on, Reflecting on what I did right after I was diagnosed with ALS.

    https://alsnewstoday.com/columns/what-to-do-after-receiving-diagnosis-als/

    I hope this is helpful to all.

     

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