Finding my place as someone with slow ALS progression

goede middag, graag zou ik uw columns willen ontvangen en lezen. Ik volg alles op ALS news today
gr john uit Nederland

I’m very new to this having been finally diagnosed just a few weeks ago. Honestly thought I was just aging faster than my friends- all in their 70’s. So I pretty much ignored what was happening and tried to compensate by being active and exercising. But my hand didn’t lie and finally led me to an astute OT who saw me twice and said this is not right…..
I have been told I’m in the slow lane as things have been gradually losing power for the past 4 or 5 years.
I have my first multidisciplinary clinic appointment in 2 weeks and I’m thinking I might need a rollater rather than my just my cane soon.
I have enjoyed all the articles I have read on this page and hope some other slow pokes chime in!

Dagmar
I think you are a Rock Star! My wife was diagnosed in early December 2024. We of course struggle with this new
direction in our lives. Your blog and book has been the best help Karen has found. It moved her from thinking about her funeral to figuring how to live with ALS. The mild exercise and the speech therapy program are really helping. Thank you sooo much!

My husband just ended his battle with slow progressive ALS recently after a nearly 10 year journey. It wasn’t until this last year that he lost his ability to eat by mouth and required a trach and vent. He was very tech savvy and took to the eye gaze immediately and became a power user and worked user- using it to speak, drive his chair and program. Strongest and bravest person I ever knew. Working was his passion and I believe that and my staying on top of his care (secretions mainly at the end) was the key to his happiness in managing his ALS.

Totally get it. My progression is slow as well. I am relieved to hear i am not the only one. I too have questioned my diagnosis and have felt as an outcast.

I was diagnosed in 2013, but mine has progressed fairly fast. I’ve been in a wheelchair for the last 5 years and have lost my voice. I’m very grateful that I’m still here, but I often feel guilty for living beyond expectations. God is good all the time! One day at a time!

I fully understand and read your columns. I discuss with my neurologist and therapist often about the isolation of slow progression and like you the support groups weren’t supportive just forums of gloom and doom. My very first clinic visit where I went with no extra devices just bit slow and speech diminished due to bulbar onset, they started conversation with feeding tube, breathing machine, utensils and self help devices, getting our home ready! I’ve had PLS FOR 9 years finally diagnosed 5 yrs ago at 75 so age and being female were always obstacles. Yes any forum to advocate for more positive outcomes for everyone would be fabulous 😘

You're singing my song, Dagmar!
Next month will see my 10th anniversary of my ALS diagnosis & although I use my NIV almost 24/7, I can still speak clearly, feed & dress myself (for the most part), & walk unaided for short distances.
Although I am truly thankful for my slow progression, I also have somewhat of a "survivor's guilt" & sometimes feel that I don't fit in the pALS community.

It has been your mental resilience that has kept me going.
Your columns I share with my family.
I imagine to many of us, you are a force of nature.
Truth be told I need the energy of resilience & the practice of “living well with ALS.”
It keeps my spirit strong while living with a Neuro degenerative condition.
Thank you for all you bring to the ALS community.

This was article was very interesting to me as I just had a discussion with my girlfriend's husband the other day. It made me think about how people perceive my ALS. My symptoms have started in my arms, hands and shoulders and that's where the symptoms have stayed so far. I definitely growing weaker and can do less than I could a year ago with my arms and hands, but everything else seems to be normal for me so far. We were at a dinner party and I was talking with my friend,s husband about als and he said how well I looked and he couldn't even tell that I had ALS. He was surprised that I was doing so well. While I am doing well compared to many other people with ALS, I explained to him that my husband helped me get dressed and I wouldn't have been there if he wasn't there to support me. I also told him I had gone to a blow bar where they had done my hair. Again, another way I appear normal. If my ALS had started in my legs he may have seen me with a cane or a walker but at this point in the evening I appeared as all the other guests at the dinner party. When dinner started i'm not sure if he noticed my husband cut my food for me. He may have noticed the straw in my glass so I didn't have to pick it up.
My daughter is running a half marathon for als. I decided to go public on my Facebook page to raise awareness for als and donations for her race. A friend I had not spoken to in many years reached out to me and commented on pictures she had seen of me out hiking with my husband. She was surprised to see me in that environment with ALS. I explained to her that my husband helped me dress in the morning, pulled my hair back in a ponytail, put my hat on my head and applied sunscreen. None of this I could do for myself. But my legs work great and we had a great hike.
Now that I have accepted this diagnosis I am filled with so much gratitude for my slow progression.
Thanks for sharing your thoughts.

Dagmar,
Love your article when are your forums? thank you

I'm frustrated as a person with ALS since the beginning of 2014. I quit taking Celebrex (Doctor's recommendation) and shortly thereafter started excess saliva and biting my tongue frequently. By 2018 I'd developed Bulbar and saw a Neurologist until she diagnosed ALS in 2020 with an EMG. She advised me to get my Will updated. After that I fell into months of depression and my physical ability deteriorated quickly. I've leveled off at 30 on the FRS scale for about 3 years. I think those of us who are slow to meet our demise would make excellent Guinea Pigs. We're available for long term study, but alas we don't qualify for most trials because we're not dying fast enough. I attribute my longevity to humor, a positive attitude and I keep busy. I still mow my 5+ acre yard with a 33hp diesel Zero turn mower with a 6 foot deck. I can barely get in the seat but from the waist up I still have good control of my muscles. From the waist down I depend on rollators, a cane and I furniture surf.

Thank you.🙏💙

Thank you for your article on slow progressors. I was diagnosed in 2009 and could so relate to your feelings and observations in your article. I continually wonder why I received the lucky slow card while others I’ve met along my journey were not so lucky. New PALS often ask my secret and I wish I knew. Seeing others going through the declining steps while I change very little brings on the guilt you describe so honestly in your writing. There is clearly something different about those of us in the slow category.
We are typically not eligible for most new drug trials because our onset is way outside the 1-3 years from onset typically part of the criteria of acceptance. On the other hand I would think that more effort to see why we are different may lead to help to those on the fast track.
Thanks for sharing your story. It really hit home foe me.

Dagmar, thank you for sharing. ALS is such a complicated disease. I never thought of the slow progressors as a challenge, I see why. Starting a forum to share perspective would be appreciated. Please keep writing. The day of defeating this plague is coming.

Ik heb pas vernomen dat ik een trage ALS heb ik vind het moeilijk om het ervaarden omdat ik pas omie ben geworden en er staat geen leeftijd leeftijd op ik hoop met een trage dat ik nog lang bij de kleinkinderen mag zijn er is nog altijd geen medicijnen en op moment neem ik niets gr carina

I to feel like an outsider. I was diagnosed in 1998, with symptoms starting in 1992. I am 61 and was diagnosed at 34. I began attending support groups shortly afterward but became depressed seeing my possible future, only to see the other people passing quickly and me still going after all these years.

Thanks for sharing. This is so encouraging. Love and light to all. I fight on

I too am a ALS slow progressor. I still do everything on my own. Was diagnosed in 2022, but my symptoms started in 2018. Being diagnosed in 2022 and having symptoms since 2018 has caused me not to be able to participate in clinical trials. When I try to get in EAP’s I am given the run around. I still remain hopeful and my family has been supportive. I feel blessed that I can still do everything but on a slower pace. I have joined ALS groups but I don’t feel like I fit in. I do ask myself why I am still here but I then I know being here means that I might be cured. I thank God each day for every single person who has helped me. I also hope there will be a cure soon for all of us!

Thank you for this post. Would you be kind to let me know what meds are on. I was told I was slow process also, I have AFO and use wheelchair. My legs don't want to walk much anymore but that is it art this time. I do belong to an ALS group in Grand MI, Susan Mast. They are great,all is welcome. We all are at different stages, no judgements but answers to many questions and sometimes we even laugh.
They said 2 to 4 years to live but reading your post I have something I can look forward to. It would be nice to live longer.
I have a strong faith. Thank you so much.

Thank you Dagmar for this post. I found it very comforting that someone else feels like me. I was diagnosed five years ago and people look at me and think there is nothing wrong with me. I had limb onset and it has mostly affected my hands. It is difficult to do many daily tasks and the more i use them throughout the day the worse they are. I have trouble sometimes eating and am no longer able to cook. I also walk much slower and tire walking distances so I do use a Travel Buggy if going for a walk or shopping. I have even had a friend I see only occasionally that has questioned my diagnoses numerous times. I do not go to support groups as I too feel like a fraud.