ALS News Today Forums Forums Living With ALS Your tips, advice, and words of wisdom for others in the ALS community

  • Your tips, advice, and words of wisdom for others in the ALS community

    Posted by Dagmar on May 9, 2023 at 11:21 am

    What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something you’ve learned along the way that can make life with ALS easier or just something that helps motivate you every day.

    Share it with us for an opportunity to be included in a collection of quotes, tips, and advice that will be featured on the ALS News Today website to help our ALS community.

    frances-goodman replied 7 months, 4 weeks ago 16 Members · 24 Replies
  • 24 Replies
  • jt-taylor

    Member
    May 9, 2023 at 2:27 pm

    Do as much as you can as long as you can. If you like to travel, do it until it is no longer possible or enjoyable. If you like music, attend as many concerts as you like. Don’t worry about the little things. Keep your connections open with your friends and family – life is too short for those disagreements or arguments that are really meaningless. Your friends and your family are your lifeline.

    • Dagmar

      Member
      May 16, 2023 at 12:02 pm

      Great tips JT!

    • christina-birdsong

      Member
      May 23, 2023 at 4:21 pm

      Hello. My doctor thinks I may have “Slow ALS” which means I could live far longer. I find very little literature on the web about slow ALS.  Does anyone have information to share with me? I would so appreciate it.

      Thank you,

      Christina

      • gail-theile

        Member
        August 2, 2023 at 1:37 pm

        Hi Christina…..I had no idea there was such a thing as “Slow ALS” either.  I don’t see any answers to your question but I would like to know about it as well.  My brother has had ALS for a little over 2 years….he was on a very long plateau for most of that time.  He could walk, talk, eat, breathe and do fairly normal things. His only treatment has been Radicava infusions…but just in the last month, he has experienced a downturn and it has happened quickly…..because of this, he probably doesn’t have slow ALS. But I’m still trying to check out everything I can. Are you on a specific treatment?  I would think that your doctor would be the one to explain “slow ALS” to you.

      • Amanda

        Member
        August 2, 2023 at 2:00 pm

        Gail and Christina,

        I’m always learning something new about ALS and it continues to surprise me.  I’ve been researching and volunteering since 2010 and there is still so much to learn.  The first time I heard the term, “slow progression ALS” was when I was interested in the clinical trials for Tofersen/QALSody.  The trials were only open to those with genetic mutations associated with rapid progression.  I though, “What the heck does the mean or even look like???” I googled, and read and read…and asked doctors.  The responses varied.  I found this information helpful.

        “According to the cutoff value, slowly progressive subtype of lower limb onset ALS was defined as patients with ALS who had a duration more than or equal to 14 months from lower limb onset to SRSI; in contrast, typical patients’, with lower limb onset ALS, duration was <14 months. ”

        I also found this in an article, it may be useful too.

        “Patients with amyotrophic lateral sclerosis (ALS) show substantial differences in disease progression and survival. However, the genetic contribution to the extremes of this spectrum remains poorly characterized. We unbiasedly selected and genotyped 102 ALS patients with very short (<15 months) and 90 with very long survival (>100 months) from the ALS registry of Ulm University using whole-exome sequencing and C9orf72 repeat expansion testing followed by a clinicogenetic correlation analysis. Clinically, groups significantly differed regarding site of disease onset, age at onset, BMI at diagnosis, disease progression rates, and diagnostic latency. We found a monogenic disease cause in 31 patients (16%) without significant differences in patients with short and long survival (19% vs. 13%; p = 0.41), but differences in the genotypic architecture. C9orf72 expansions and FUS mutations were only found in fast progressors, whereas SOD1 variants were frequent in both groups contributing 52% of all monogenic cases-33% among fast and 75% among slow variants. Our genotype-phenotype correlation may be relevant for genetic counseling, estimation of prognosis, and therapeutic decisions.:”

        https://www.elsevier.com/open-science/science-and-society/access-for-healthcare-and-patients

        https://pubmed.ncbi.nlm.nih.gov/35933239/

      • Amanda

        Member
        August 2, 2023 at 2:00 pm

        Gail and Christina,

        I’m always learning something new about ALS and it continues to surprise me.  I’ve been researching and volunteering since 2010 and there is still so much to learn.  The first time I heard the term, “slow progression ALS” was when I was interested in the clinical trials for Tofersen/QALSody.  The trials were only open to those with genetic mutations associated with rapid progression.  I though, “What the heck does the mean or even look like???” I googled, and read and read…and asked doctors.  The responses varied.  I found this information helpful.

        “According to the cutoff value, slowly progressive subtype of lower limb onset ALS was defined as patients with ALS who had a duration more than or equal to 14 months from lower limb onset to SRSI; in contrast, typical patients’, with lower limb onset ALS, duration was <14 months. ”

        I also found this in an article, it may be useful too.

        “Patients with amyotrophic lateral sclerosis (ALS) show substantial differences in disease progression and survival. However, the genetic contribution to the extremes of this spectrum remains poorly characterized. We unbiasedly selected and genotyped 102 ALS patients with very short (<15 months) and 90 with very long survival (>100 months) from the ALS registry of Ulm University using whole-exome sequencing and C9orf72 repeat expansion testing followed by a clinicogenetic correlation analysis. Clinically, groups significantly differed regarding site of disease onset, age at onset, BMI at diagnosis, disease progression rates, and diagnostic latency. We found a monogenic disease cause in 31 patients (16%) without significant differences in patients with short and long survival (19% vs. 13%; p = 0.41), but differences in the genotypic architecture. C9orf72 expansions and FUS mutations were only found in fast progressors, whereas SOD1 variants were frequent in both groups contributing 52% of all monogenic cases-33% among fast and 75% among slow variants. Our genotype-phenotype correlation may be relevant for genetic counseling, estimation of prognosis, and therapeutic decisions.:”

        https://www.elsevier.com/open-science/science-and-society/access-for-healthcare-and-patients

        https://pubmed.ncbi.nlm.nih.gov/35933239/

  • lorraine-larkin

    Member
    May 9, 2023 at 2:34 pm

    I would strongly advise finding a palliative care doctor in addition to going to an ALS clinic. We found one for my husband through a recommendation fron our ALS clinic. She has been fantastic and she is local, where the clinic is an hour away. She has made a big difference. Don’t wait to find one.

    • Dagmar

      Member
      May 16, 2023 at 12:03 pm

      Another great tip! Thank you Lorraine.

      • lawcarol

        Member
        August 14, 2023 at 9:42 am

        My experience with Palliative Care physician was horrible.  It was the peak of covid.  He zoomed with the social worker but didn’t let her speak.  I learned from Facebook that with ALS we could have gotten an exemption on property taxes; the socialworker should have told me this.  I fired the Palliativedoctor but he insisted on meeting with me;  that was awkward. I asked for hospice one month after diagnosis finally self-referred after 18 months.  Ironically after 6 months on hospice I no longer wanted to die but now I’ve started the eye tech and I think I’d rather die than battle with this technology.  I’m giving my eye blink device success coach one more week. What a godforsaken disease!

    • gail-theile

      Member
      August 2, 2023 at 3:47 pm

      Hi Lorraine,

      Not sure how Palliative Care works.  Does someone come to the house a certain number of times during the week….or does the patient come to the doctor’s office?  Is it always the same person?  Do you have to find a doctor who specializes in P. Care?  Do they just come and the patient describes what he is in need of that day?  My brother goes to an ALS clinic for a standard checkup every 3 months, but then he’s never seen by anyone and is only in contact with the clinic if he has a problem or a question.

  • reese

    Member
    May 9, 2023 at 3:20 pm

    Don’t exercise strenuously, archive your voice while it still sounds somewhat normal or use a recorded presentation / conversation for the dataset as I did, be efficient in your movements – think ahead before moving so there is no wasted efforts, get creative using your fingers for tasks – use them in nonconventional ways along with tools.

  • mary-jo-fairweather

    Member
    May 9, 2023 at 7:02 pm

    Keep doing the things you love for as long as it’s safe. Keep your family and friends up to date on your journey. Reach out to other’s with ALS for support and advice. Our local Society hosts two zoom calls each month and I’ve learned so much and have made good friends through them too.
    Have your home evaluated by an occupational therapist to find out what you’ll need as the disease progresses and get the equipment and changes in place before it becomes an emergency situation. Falls can progress the symptoms, so do whatever you need to do to prevent them.  Be kind to yourself.

    • Dagmar

      Member
      May 16, 2023 at 12:05 pm

      These are thoughtful and practical. Thank you for sharing them Mary Jo.

    • beth-rookey

      Member
      May 16, 2023 at 5:10 pm

      Yes, I too attend Zoom meetings 2-3 times a month, it’s great to connect with other pALS to see how they’re doing!

  • lanny-kohnhorst

    Member
    May 16, 2023 at 2:15 pm

    If it is your spouse that is suffering through ALS spend as much time as possible with them, the end is nearer than you think

  • Dagmar

    Member
    May 22, 2023 at 11:39 am

    My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.

    • beth-rookey

      Member
      May 22, 2023 at 1:09 pm

      An ALS clinic visit tip I do: I visit every 6 months & I have a list of the teams email, I write a group email to the whole team. I tell them what has been happening since my last visit with me, my family & then I write to each department:

      • PT – My wheelchair is working well, the Roho cushion is good, no skin issues. My L elbow support is loose, can you look at it please?
      • RT – The Trilogy is working well, I’m wearing it for 10h each night. The rep has taken info off of it & sent it to you, what did it show you?
      • ST – My HeadMouse is working well still, I can’t believe I’ve used it for 2 years! Dasher is still my way to write. My speech is getting harder to understand, can I discuss what to do next?
      • OT –
      • SW –
      • DT –

      I start writing it about 2 weeks before my appt., then send 1 email to all the team members & then go to my appt. When I see each one, I’m not talking very much & the Q’s I asked, PT to tighten the elbow & ST, the team are ready to fix or show me results. It saves me from repeating myself 10+ times during my appt. & my neuro & the team appreciate it because everyone knows what’s going on with me at the same time!

      I have a great team at The Hospital for Special Care in New Britain, CT, I’ve been there since 1995 and have been doing this email for about 10 years. It works for me, it may save you some energy too! 🙂

  • Dagmar

    Member
    May 22, 2023 at 11:44 am

    Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:

    What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something you’ve learned along the way that can make life with ALS easier or just something that helps motivate you every day. Share it with us for an opportunity to be included in a collection of quotes, tips, and advice that will be featured on our website to help our ALS community.

    Thank you all!

  • dustin-kassman

    Member
    May 23, 2023 at 5:47 pm

    Don’t wait to get a piece of equipment until you need it because the approval and acquisition process always, always takes longer than expected. And be diligent about checking on its status. Almost every piece of equipment, from wheelchair to Tobii device to seat cushions, has gotten hung up in the process and would have remained stalled if I had not followed up.

  • brian-stanfield

    Member
    July 7, 2023 at 3:25 pm

    Smile often. Spread joy and let people know that you haven’t given up on life. ALS is a devastating diagnosis and it can overwhelm even the strongest of characters.  Choose to live and make the most of each and every moment. I’ll also recommend smile often from a practical standpoint. After 20+ years living with this disease my facial muscles (along with the rest of my body) are completely shot. The result is “resting frown face”  which is even worse than it sounds. Who wants to perpetually look like someone ran over their puppy? Exercise those muscles moderately every day!

  • paul-tavano

    Member
    July 11, 2023 at 3:35 pm

    I couldn’t agree more with the suggestions to stay positive and to do as much as you can for as long as you can. Don’t pass up the opportunity to tell those you love that you love them. Don’t let the changes that you have gone through and are going through hold you back from participating. So what if your speech is off and you have to repeat yourself often, so what if it takes you longer to eat, so what if you need handicapped seating, so what if you accidentally drool, so what if you need to ask for help. The bottom line is we are all dealing with new realities every day and will need to adjust what and how we do things. Adjustment doesn’t mean stop doing things but to adapt to how to do things.

    • Dagmar

      Member
      July 13, 2023 at 12:18 pm

      Paul – – my sentiments exactly! I always say, “Adapt, Learn, Survive.” (and that happens to stand for A-L-S) 😉

  • alan-waite

    Member
    August 15, 2023 at 5:03 pm

    <p style=”font-weight: 400;”>As I have previously explained, my wife passed away from ALS complications less then 6 weeks after her diagnoses. So, we never had the opportunity to avail ourselves to the many great suggestions as previously written in this column. My comments are from a caretaker’s perspective.</p>
    <p style=”font-weight: 400;”>Before our wives, husbands, or significant others were inflicted with ALS, we had full, rich lives as friends, companions, confidants, and lovers. For me, once Connie was diagnosed with ALS, I whole heartedly accepted the additional role as caregiver. I discovered that as her ALS symptoms became more prevalent, my role as a husband was somewhat diminished in lieu of ensuring Connie’s personal needs were accomplished, i.e. eating, bathing, communicating, taking medicine, going to doctor’s appointments, etc. But we were still our husband and wife. Connie needed more than ever that hug, kiss, the holding of her hand, or a soft I Love You whispered in her ear at times when it became most difficult. I reflect on our experience and question if I did enough of these somewhat simple expressions of my love for her to comfort her when she was most vulnerable. So, I just want to encourage all caregivers to never forget that we were husband, wives, or significant others before we were caregivers, so don’t ever neglect the simple expressions of our love that means so much in their time of their greatest need.</p>

  • frances-goodman

    Member
    August 17, 2023 at 2:48 pm

    How do we get a voice amplifier?  Our local ALS says they have none.  They are all out on loan.

  • beth-rookey

    Member
    August 17, 2023 at 3:24 pm

    I bought one on Amazon for $36 and it’s rechargeable, it works well for me! https://a.co/d/75suy1Z

    • michelle-doreen-smith

      Member
      August 17, 2023 at 7:54 pm

      I don’t know where you are located, but NYU Langone Hospital has a occupational therapy assistive technology department. My contact there is Holly Cohen and she has been invaluable and and acquiring such things as an attachment to hold my phone, an attachment to hold my iPad and a hands-free page turner for my Kindle just to name a few.

Log in to reply.