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Your questions and tips (slow progressors)
This discussion thread is for those with slow progressing ALS symptoms to ask each other questions or share tips.
To help readers following this thread, please use the REPLY prompt associated with each question.
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20 Replies
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Noteworthy Characteristics
I’ve noticed some earmarks that I think are related to (my) Slow Progression.
1.) I have high and low energy days. They seem to happen in cycles, with each high and low consisting of several days. I attribute them to hormones, and until some R&D Lab disproves me I will continue with that belief. After all, we’re chemical factories and hormones affect the mix. Why “Slow Progressors” haven’t attracted more interest baffles me. I’d rather study something in slow motion when the window for effective study is typically 2 years. I say 2 years because that’s a requirement of many Drug and Treatment Trials. If you’ve had ALS for 2 or more years they don’t want to use you for a Lab Rat. I would think there would be a great value to find a relatively healthy group of survivors with ALS for more than 5 years. I say 5, because statistics I recall indicate 80% of ALS afflicted are gone by 5 years. I would give this group of survivors a battery of tests to map out their chemistry, biology and DNA, and compare it to Fast Progressors and non-afflicted population. Differences between the 3 groups would give Research a starting point.
2.) Besides energy, Other Cyclical Characteristics I’ve noted are:
A.) Saliva. Output goes up and down. This wasn’t so much cyclical as constant. Lately it’s been down. I take Glycopyrrolate, but that doesn’t explain the down cycle as I’ve taken it for months while the output was up.
B.) Coughing. This is mostly constant but I’m currently better with it.
C.) Speech. This follows Coughing to some degree, but I’ve noticed when I’m going to be talking and I know I’ll be talking, my speech is better. Specifically when I’m talking to my GP, or Dentist, Dog Club Meeting and Quarterly Virtually Meeting with the ALS Clinic. So if I am expecting to use my voice in an extended manner, it’s as though I’m saving up my motor neurons for that task. Consequently, I avoid talking while walking. Prior to an expected talking session, I’ll apply a hot wash cloth to my face to loosen up my facial muscles, mainly the mouth. Also, I’ll take a lemon cough drop to clear my throat. The cough drop can be surprisingly helpful. It desensitizes my throat muscles and I don’t cough as much. Also I articulate better.
D.) Walking. I have to use a rollator to get around. I can’t use only a cane. I’ve noticed there are days when I can barely lift my foot off the ground when walking, and there are days when I can practically prance. I was feeling so good at one point, I started googling “How to walk” so I could begin a regimen of exercises and routines. Then I began a downward cycle.
I feel like I’m on the cusp of getting better or worse. It’s maddening. I try to compare these cycles to my diet and emotional state. I study each food package for MSG to eliminate glutamates. My emotional state seems to have an effect. Normally I’m positive and upbeat and I try to avoid conflicts.
John Walker 5/16/25
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I have noticed the same up-down/good day not so good day cycles. On the days I feel almost-normal-again, its had not to overdo. On the off-days, I have to mentally overcome feeling that I’m losing control. Reading your account helps me know I’m not the only one who experiences this.
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Your observation on your down days mirrors mine. I try to stay upbeat and distract myself with streaming TV. I try to find something I can binge. I broke down late last year and subscribed to Britbox. It seems I have an affinity that British Mystery genre as I’m about half British (Irish/English/Wales) per Ancestry.com. I’d like to get into “Silent Witness” starting with season 1. There are 28 seasons and with a commitment to see the show till it’s last episode, I might stretch out my tenure for 2 or 3 years.
Anyway I’ve noted that when I smile I feel a little better. I think that is supported by science relative to “feel good” hormones. I’ve also noticed with my “up and down” cycle, the emotion factor is affected too. My tears don’t flow as easily with sadness and happiness. I learned the smile principle over 50 years ago when I was a DJ in training. My mentor told me to smile because it would put a smile in mu voice. The audience would notice.
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Dagmar and others I am Fred diagnosed in Jan 2024 as probable but with possible onset in 2019. I have lost strength mildly to moderately in my hands and shoulders and arms and symptoms come and go. My worst symptoms are strong twitching since 2019 which varies and has receently begun to spread to other areas and cramping when I do certain movements. Is this a common problem with slow progressors, or am I no longer in that category?
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Fred1, I believe what you are experiencing is common to ALS in general. Even slow progressors get occasional twitching and cramping. Are you doing daily range of motion movements with your arms, hands, and legs? Those have helped me avoid muscle cramping.
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I definitely have up-and-down days as well. My ALS affects my shoulders, arms and hands. I still drive and there are some days where both my hands can go to the steering wheel and there other other days where I have to lift my right arm with my left hand to get it on the steering wheel. I haven’t been able to figure out why sometimes I can easily do this and other times I can’t.
I have just started noticing that I think the ALS is moving to my mouth. Sometimes when I try to form words I almost feel like I’ve had too much to drink, when I’ve had nothing to drink, and I have to focus on articulating my words. Again, some days I don’t notice this and some days I do.
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Question for slow progressors: Do you still attend your ALS Clinic? If so, how often? If you’re not going anymore, why?
I still go to my clinics, although it is now every 6-months. I still go because I need to have my doctor renew my prescription for riluzole.
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I was going to the ALS Clinic every 3 months and the appointments coincided with my monthly QALSody treatments. They changed the treatment schedule so now the appointments are not always on the same day or the following day. (I have to drive 3 hours to the clinic) So, when I spoke to Dr. Carberry we agreed that since I see him every month I could go to the ALS Clinic less often. So he works with the clinic to schedule the appointments. I continue to volunteer for ALS research at the University of Miami and I go through a thorough exam every quarter. It includes an EMG, blood work, cognitive assessments, basically a day or two of testing. I think they are keeping pretty good tabs on me one way or another. Since Dr. Carberry is part of both the ALS Clinic and the ALS research, he is always aware of what is happening with my body. I honestly think that I extremely fortunate and have the best medical team looking out for me.
Amanda
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I had a quarterly virtual meeting 2 days ago. I changed it to 6 month intervals, since not much has changed for me in 3 years. I feel like a skipping record (baby boomer expression) when I report in. I’ve put together a report on my condition and send it out before every virtual meeting. My ALS team appreciates it. I feel like I’ve lost my safety net, but they said in the interim I can email them with any question or concern.
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I too, have been classified as “Progression – Slow” despite the fact that I see change, though some are very subtle, virtually every day. Just had my third fall in 10 days and this one negatively altered my balance. I have always been an optimistic person, especially having been in sales management. But now I guess I see the proverbial light at the end of the tunnel and reality has definitely set in. New Jersey is a M.A.I.D State and I now feel the need to directly address this with my clinic and pulmonologist. I have long ago signed a medical directive and it would appear it is time to begin putting that in action. Having believed I was on an ALS pathway as of 3 years ago, and confirming that one year ago, I am thankful, being in my 80th year, as I at least, had a full life. Not all get to achieve that assumed goal. … So “Progressive – Slow” is neither a blessing nor a curse, just a classification of the species of disease we must deal with.
As for assistance, I take no medications as I prefer to not extend this pathway, and I apparently must now “graduate” from a cane to a walker/rollator due to decreased balance. Oh well.
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K-Allen, yes, using a walker is a lifestyle change that you’ll need to adapt to … but after numerous falls, it is the best course. Best to avoid having to lay in a hospital bed with a broken bone, than the freedom to enjoy friends and family a little longer – – even it means pushing a walker.
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I also experience cyclic better/not as good days. My main issues are walking and fatigue. I do notice that when I have an appointment or activity of some kind I am able push myself more. If I have something (doesn’t take much) 2 or 3 days in a row though, I will need to really rest / sleep more to get back to baseline.
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Jane, I think we pALS have to adapt to our muscles having to work overtime (due to less motor nueons firing and muscle atrophy). We are accustomed to being able to rally on busy days and only need a good night’s sleep to recover. I’ve learned to anticipate needing a few days of recovery time – – and make sure I take them. Perhaps this column I wrote about what I do be helpful to other forum members:
https://alsnewstoday.com/columns/als-post-event-recovery-tips/-
Thank you for sharing this previous article, Dagmar. I have found all of the articles that you write to be informative and encouraging! This one is a particularly good one for me to read.
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Thank you!
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Interesting topic about our day’s level of energy and movement. The idea of reserving for days that are busy is great suggestion which you would think after 9 yrs living with the uncertainty of this disease I’d have figured out! Most days it’s more roller coaster from hour to hour which does definitely affect my mental/physical well being which drives me more crazy not realizing this is life now days and still thinking when those great moments occur I can paint the shed, wallpaper the dining room and maybe even iron!!! I have a therapist through my Teleheath Clinic who likens the down times to a bear hibernating to rest for the next season or moment, this thought sees me through those times when the down time can last few days not hours. They also recommend that I go to in person clinic for assessment and follow up with PT, Speech and Pulmoogogist which I have locally and they actually coordinate which helps me more than anything. Thanks for your patience and time, needed these thoughts today! Chris
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I was classed as a ‘slow progressor’ this year having had symptoms and repeated PT since late 2019. I have good days and not so good days. Generally, if I have a very bad day, I will notice a loss of something that I was able to do previously and it can be small, but still noticeable( like putting my left earring in). I do constantly self monitor if I am not engaging my brain in something else.
The last 6 weeks I have had unbearable itchyness/rashes and have tried new oatmeal soap, , a filter on the shower, the dermatologist, the primary doctor, a course of steroids, and even stopped the riluzole. Is there a connection to this itchy rash that comes and goes? Has anyone experienced this? I will call the clinic next week, but thought I would try to sort it out first.
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I am not sure about up/down days. My personality type is Ambassador, and I usually find it easy to distract myself from sad or negative thoughts. I get on forums and work with Veterans, AA and NA groups, and ALS forums. It takes me out of myself, and it feels good if I can help others.
My tip is for Lion’s Mane Mushroom (LMM) supplements. I started taking them in 2017 while pursuing my BA in Psychology. I was introduced to them as a nootropic, and they seemed to work well. My studies showed that LMM stimulates BDNF (brain-derived nootropic factor) and NGF (nerve growth factor). BDNF increases the number of synaptic connections in your brain, which contributes to an increase in IQ. The more connections, the better off you are. The it “in a nutshell” is that it is active in the frontal lobe and capable of doing the same thing in the corticospinal tract, where motor neurons are. NGF stimulates nerve growth in the muscles. When a muscle becomes denervated, the body naturally creates NGF, which stimulates NGF production, aiding in the growth of nerves from adjacent innervated muscles into the denervated muscle. The natural process already exists; LMMs increase the amount of NGF.
LMM can slow ALS IMO. ALS Unraveled studied it, and the results are that it needs more study. Dr. Bedlak from Duke University is an icon in ALS research. I get 1800 mg capsules from Amazon (Toniq brand, 120 per) for around $25. I20 capsules last 60 days, I take 2/day.
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Johnny5, I have heard about Lion’s Mane Mushroom (LMM) supplements for the past 15 years that I have had ALS, and nowhere have I read that it has any effect on ALS. Even ALS Untangled looked at it and couldn’t give a definitive answer. “Needs more study” is another way of saying, it doesn’t work.
Maybe it improves IQ (???) and stimulates nerve growth, but those are not related to the condition of ALS. Something that addresses why the motor neurons are dying off does. Sorry, but vitamins and supplements are only good for the people who sell them.
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In College, I was researching info on LMM through their library. There are thousands of studies on LMM. You can find many on the NIH site and Google Scholar. A standard Google search linking LMM, BDNF & NGF would provide a large volume of information.
ALS Untangled statement:
“While Lion’s Mane may have neuroprotective,
neurotrophic, antioxidant, and anti-inflammatory
properties that could, at least in theory, potentially
help ALS, there are still no studies in ALS-relevant
cell or animal models, nor in humans with ALS.
Therefore, we do not have enough information to
support the current use of Lion’s Mane for treating ALS We hope to see the validation of its neuroprotective and anti-inflammatory benefits in ALS disease models, which may ultimately lead to clinical trials in PALS.”The actual study by ALS Untangled:
https://www.alsuntangled.com/wp-content/uploads/2024/01/ALSUntangled-73-Lion-s-Mane.pdf
They need further study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10319848/
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