• Ashley Fisher became a registered member 2 years, 8 months ago

    • Hello Ashley, Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS; I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. The easiest way to see what is current is to click “Activity” on the top menu bar. Then scroll down.

      If you have any questions, concerns or even suggestions, just let Amanda (my co-moderator) or me know, and we will do our best to help you. Again, thank you for joining our forum – – I look forward to chatting with you!

      • Thank you! I’m happy to be here.
        I have one question, how have you managed to stay in this world for 9 yrs after diagnosis? That’s incredible!

        • Hi Ashley, Yes… 9 years now! I am walking (with a rollator), eating, speaking and ‘breathing’ 🙂 …it can be done 🙂

          I write a column Living Well with ALS, https://alsnewstoday.com/category/living-well-with-als/ where I share tips and motivation for resilience and living with ALS. Also, my personal blog ALS and Wellness, https://alsandwellness.blogspot.com/ may be of interest to you. I am happy to answer any questions you may have and to help you in your own journey with ALS.

          • That’s fantastic news. Congratulations on being so strong and having such a positive attitude. Thank you for the link. I’ll definitely be reading it. This makes me very happy to hear. I’m excited I’ve joined this forum. 😉

          • But have you done anything specific to be able to still walk, breath and eat? All I’ve seen and read is how quickly it takes over all of those things. I know it effects everyone differently, but my husband is convinced he’s going to die tomorrow! Just because he feels crappy most of the time. He was only just diagnosed in August of this year, but has had symptoms for over a year. He’s wearing a foot/leg brace, and using a cane, but I can see that he’s struggling more and more with that leg. He refuses to ever use a breathing machine, a feeding tube, or anything to prolong the disease, when that time comes. Although he may change his mind if it ever gets difficult to breath. I’m currently giving him foot and leg messages, and pulling his foot forward to stretch his muscles in his leg. We’re just living day to day, and don’t really know why I’m telling you all this, just venting I guess… thanks for listening! 🙂

            • Roxanne,
              This is a safe place to vent. You are welcomed to vent, share you fears , and ask all the questions you want. The ALS forum members are absolutely wonderful and very supportive! I am glad that you have joined. Please continue to ask questions and you are welcomed to post discussion topics too.

              Amanda

    • Well, he is a very stubborn man, and does not have a very positive attitude; more on the side of “it is what it is”, and “what will be will be”. And definitely will not try a supplement program. But he doesn’t feel sorry for himself, and actually feels lucky to have lived as long as he has, as apposed to young children that get cancer and die at a very young age, in his words. So I’m doing my best to keep his spirits up, and he has a lot of friends helping him out with yard work, taking him out to lunch, etc. I’m just trying to keep things normal as long as we can; a little in denial of it all I guess.

    • He did express interest in doing a trial, but we need to get information on where and when as long as it’s close to home, and then get transportation lined up as well. So I’ll talk to him about that soon and see how he feels. Thanks for your help.

    • We live in Mayer, MN.

      • Roxanne – I agree with Ashley that you can vent anytime here 🙂 We are a support community of like-minded folks. I also agree that attitude is important – – but it does take time to get to that optimistic state of mind – – especially so soon after being diagnosed. I look back, and realize that hearing this diagnosis is really a ‘traumatic event.’ Learning more about ALS only adds more mental trauma… so no wonder we all start out shocked, depressed and angry. We have PTSD of sorts – – you and your husband need to allow the emotions. But, do read and learn from those of us who are successfully living with it. I have a short list of my recent columns I recommend for you both.

        ALS doesn’t “take over” the body – – toxins build up in the brain and cause the loss of our motor neurons. We can help our body-brain keep the levels low. And we can retain health in the unaffected muscles. It’s important to not think too far ahead (feeding tube, trach, etc.) and deal with what the symptoms are now. Take each new symptom one at a time (when and if they happen).

        Massage and stretching are very good. So is gentle overall exercise for the whole body – – daily.

        What do I do? A lot: First, I followed my doctor’s recommendations: attend the ALS Clinic, take my medications, am willing to use assistive devices, eat wholesome foods, sleep well and keep my body moving with daily exercise. Then… here are some links:

        Reframing Our Approach with a New Kind of ALS Diagnosis

        Are You Stuck in the ALS Waiting Room?

        From Balloons to Bubbles: How I Breathe Well with ALS

        Be Willing to Do Just One Squat


        … these are just a few that may be of help. What else do you want to know? 🙂

        • Ashley – – I am sorry, but I must speak up and mention that the Deanna Protocol is a controversial diet regimen and has had zero human studies (all have been on mice). It is not recommended for ALS patients. You can choose to follow it and purchase the “product” – – but it is not appropriate to promote to others without them knowing it’s lack of validity. Here is a helpful link to an analysis of this diet by Dr. Bedlack (neurologist at Duke Univ. Clinic)
          https://www.tandfonline.com/doi/pdf/10.3109/21678421.2013.788405

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