-
What aspect of ALS has surprised you the most?
Very few of us knew exactly what ALS was when we were diagnosed and most likely we went home and immediately spent hours on the internet to learn more.
Now that you’ve been living with ALS for a while, what has surprised you the most about the realities of the disease? What preconceived notions did you have that have changed over time?
-
18 Replies
-
How much pain I’m in and other PALS are in. Not just cramps and spasticity but joint and muscle pain and weakened muscles causing ligaments and tendons to get tendonitis and tears.
I’ve always been muscular and thin and I did gain weight per my doctor’s recommendation but I’ve never been above BMI of 24 and have stayed the same weight since 2018.
I’ve interviewed over 100 PALS and even more CALS. Pain is very common at all stages of ALS and I went to three Centers of Excellence to be told there is very little pain in until the end stages.
-
I’ve never experienced outright pain. Discomfort, maybe. Tight muscles, some cramping, and stiffness… but never pain. Perhaps my years of gymnastics changed my perception of what is pain and what is not. Or those years taught me how to effectively manage tight muscles and the occasional cramp.
-
According to Mayo, ALS can affect nerve roots and that generates a host of sensory symptoms. I was a competitive athlete and also ran 5-10 miles a day. I had a very high pain threshold, but the pain I have now is nerve pain, along with pain from weak muscles not supporting my joints. I’ve had every test imaginable looking for a co-morbidity. “It’s just ALS” is what both Johns Hopkins and Mayo say. Now I see a local pain management neurologist who helped another PALS I knew. I never drank or smoked weed so using medical cannabis and opiates really scared me. It’s much better than the pain.
-
Kim and Carol, I ran across this article from the ALS Assoc. supporting the fact that pALS can have pain. (see #4)
-
-
I agree. I’m in daily pain. Every muscle, not just the cramping but just constant pain. Knees are painful. They snap and pop. Whole body hurts. Etc etc Also was told by director of her als clinic. There’s no pain with ALS. Going to start back up with my local pain management clinic but acupuncture massage therapy,painful for me, didn’t help me. I take so much Tylenol. Any suggestions would be appreciated. I will revisit Dagmar’s stretching exercises also. Thank you
-
Carol,
Be very careful. PT made my pain worse even though I cautioned them on how to treat someone with ALS. I recently went to an orthopedic for my knees. Because of atrophy, my knees are in terrible pain. I can still walk but they hurt so much. I can no longer tolerate massage. My inflammatory markers are very low but the MRI shows inflammation on the bottom of my left foot and in my tendons. I developed tendonosis in both legs. Stretching the correct way made it worse. The only relief, for me, is gentle pool exercise.
My pain management doctor has helped me medically manage the pain. Ice helps some spots but heat helps others. I take CBD (Charlotte’s web) THC tincture, lots of magnesium, supplements for inflammation, rub magnesium oil on my muscles every night, use a compounded topical cream that has five ingredients, Valium for muscle relaxation, and Oxy for severe break through pain.
I’ve interviewed hundreds of PALS and CALS when I did an awareness paper in 2016 and more than 50% reported pain that wasn’t spasticity or cramps.
You’re certainly not alone.
You’re welcome to message me.
-
Carol, Actually I don’t do “stretching” in the traditional sense. What I do could be better described as: flowing movements (some repeating) that take each body part or joint through its (current) full range of motion. Some stretching is done by pausing for a count of 5-ish. But never severe, forced, long-held stretches. My objective is movement.
That’s where I believe pALS get in trouble … by doing a few forced stretches with the body part that’s most stiff and quitting. They don’t hit all the joints and muscles (not all at once, mind you, but divided into short bouts throughout the day).
Kim is correct in that we need to be careful of our bodies. I’ve found inspiration and ideas from following Stroke rehab sequences – – lots of helpful ideas from this site: https://www.youtube.com/@rehabhqofficial/featured
-
-
-
Each time I saw a neurologist I was told I would not suffer any pain due to MND.
I have to admit that on a day to day basis I do not have to take too many pain killers. What I have found though is that as I have lost more use of my leg, I now find I am getting a lot more pain down my right arm and under my right arm pit. I presume it is because I now have to use sticks and a leg brace to simply walk 15 steps, so it is the pressure down the right arm from carrying the left leg.
-
I was surprised at how ALS affects us so differently – – from first symptoms, to progression rates, to response to medications.
-
Yes, it is extraordinarily different from person to person. My first symptom was my eyesight going in and out. Periodically everything I looked at became white and then resolved back into the way it out to appear. Then I found that I could not lift my head up when I was laying down. I began to have remarkable muscle wasting between my left and right shoulder and anything I did exhausted me. Yet, because I’m in disbelief (I don’t mean that I am sticking my head in the sand) I have often felt that I did not have ALS because I felt so strong in many ways. It must be this way for many people. I am only seven months since diagnosis and now, every day, I recognize a little more loss of function. I am greatly heartened that I have found numerous, helpful resources to find help, advice, support and more. I especially thank Dagmar for the tremendous work she does on this site. Just having this many people to share the process with is like compassion. I am not alone. I am only encouraged to face it and live the best life possible. Thanks to each of you.
-
Thank you Christina! 🙂 Perhaps my blog will be helpful to you too.
ALS and Wellness Blog: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
-
-
After the months of trying to figure out what was actually happening, we got the diagnosis. My husband was aligned with an ALS clinic. Our first reaction was optimism about getting started with care. It was difficult to accept that you are actually on your own. His difficulty is breathing, general weakness and muscle wasting. His diaphragm seems to have been attacked pretty violently. He uses a bipap machine and cough assist. The big surprise was there is no treatment just a Zoom meeting every three months.
-
After my diagnosis in July 2022, I keep pushing myself in the gym even though I was advised not to do that – “exercise just hard enough to have a conversation” is what I was told, but I ignored this advice. I always gasped for air afterwards, felt good. I set a PR for my 60’s on the rowing machine after diagnosis, but now I really regret doing this. I believe I killed motor neurons in my lung muscles by pushing, this happened over a period of just days. My analogy is a tire – if we burn rubber pushing hard, there’s less rubber and there are is no tire that can be exchanged for the worn out one. Save the rubber. I notice now too the endorphins from exercise are gone.
-
Reese, I understand your regret about overdoing the exercise. At the time, it just “feels” like we can make ALS go away by pushing harder. But, I’ve learned that we’re only creating a higher toxic load of oxidative stress by-products that our bodies are not able to flush out. The build-up causes motor neurons to die.
Our challenge in living with this ALS condition is to find the sweet spot or, balance of daily intake of medication & anti-oxidants that help our bodies offset the daily build-up of oxidative stress from just going through our day.
-
-
How relentless ALS is. I still expect to recover from this. Each time I note deterioration I get a little depressed. That’s partly why I’ve become reclusive. I started withdrawing when I started losing my speech. That’s typical with Bulbar/Dysarthria. Now, 5 years later, I’m barely able to walk. So if I go somewhere I think, “I was able to walk up that sidewalk. Now I need a cane/rollator.” These are mileposts that come to mind when I go out. The enhanced emotion factor is more pronounced. Sad or happy emotions on TV elicit an exaggerated same emotion in me. I fight it. I adopt a fairly positive attitude, but I’ve always been positive. There are so many possible triggers/causes for ALS and none have been clinically tagged as a true cause. There are so many unanswered questions, like why do heavier people weather ALS? I put on 20 pounds fairly quick. My clinicians say they don’t know why, but all agree they’ve observed this. So nutrition in the gut tends to support a probiotic factor. Why do military personnel have a higher 2X chance of developing ALS? Why do physically active people have a higher chance of ALS? Why do people with higher stress have a higher incidence of ALS? These are just observations, not necessarily facts. I was a Power Plant Engineer in charge of pollution equipment that I inspected probably 10 to 20 times a year. I put on the Tyvek suit and full face filter. I took a shower after I was done with inspections. I was in charge of 9 Bi-annual EPA stacl particulate test. So about 18 years of stress. Failure to pass a Bi-annual test could have a max fine of $35,000/day since the last test. About $25 Million. Physically the job required walking probably 10,000 to 20,000 steps a day and climbing several floors of stairs. I loved the job, but it could be too much at times. That doesn’t even cover my daily responsibilities. I’ve earned a nice retirement, but I won’t get to realize it. So what happens when big Pharma gets a silver bullet? How long before Joe Schmo gets to get treatment. I was diagnosed almost 3 years ago. I estimate I’ve had it 9 years. I quit taking Celebrex about then for my Osteoarthritis and I noticed I occasionally bit my tongue more shortly thereafter. Celebrex was getting a bad rap for cardio problems due to being an Nsaid. It was taken to reduce arthritic inflammation. And that’s one more thing, neuroinflammation seems to be the basis for ALS, Alzheimer’s, MS, Parkinsons, etc. Nothing like being a concerned observer.
-
I am most surprised by the large number of friends and family who have been so supportive. Not just with time, but with practical tips, good food being dropped off. I have been richly blessed with kindness and generosity.
-
If I don’t get cramps the pain isn’t bad. And I don’t get them often.
Loss clear speech surprised me and bugs me. Have to repeat myself every time. Gave up talking to strangers.
-
If I don’t get cramps the pain isn’t bad. And I don’t get them often.
Loss clear speech surprised me and bugs me. Have to repeat myself every time. Gave up talking to strangers.
-
The rapid decline in my husband’s health since his Bulbar Onset diagnosis 12/6/22. Feeding tube placed 12/30/22 stopped the weight loss and enabled him to gain back 15lbs. We’re now 98% nutrition & hydration thru his tube – choking is scary to the core… Bipap all night works fine – but now having slight headaches mornings even after our Resp. Rep changed his settings. He is reluctant to use “Cough Assist” even though we understand it’s usefulness! He is SO BRAVE and never complains! We just had the “Walk to Defeat ALS” here in Sarasota last weekend… His team, our team – “Simmons Sole Mates” was 100 strong and raised over $50K for our Florida ALS Chapter! That’s a lot of Love and Support! So Grateful and SO Blessed to be Bob’s wife – “Love Without End”.
-
I just asked my husband this question. He said it was the speech. My husband has always been the family spokesman. Today, it’s just the opposite. It hurts my heart to see him struggle to get his words out. We have voiced banked for the future. But we know it will not be the same. But we’re thankful for technological advances.
-
How quickly i lost my ability to speak. Just wished that i had banked my voice. Too late and now I have to use a unfamiliar voice on my Tobii. Also the loss of strength and dexterity in my left side. Hate to have to rely on assistance getting up from the bed and the chairs in most restaurants.
-
What surprises me the most about ALS is how the symptoms range from one person to the next. When you first receive the diagnosis you’re told the grave prognosis that most people die within 5 years but, the reality is that there are many people living with this condition and have learned how to navigate the struggles.
I have also found that ALS does not exist in a vacuum and many people struggle with comorbid illnesses, but there is very little information on this or how to cope with symptoms of ALS that may exacerbate other existing conditions or issues that may come about post diagnosis. This in itself becomes a personal journey of discovery to see what works and what doesn’t. I have found that moderation is key. I try not to push myself too hard but I still push myself to do what I am able from one day to the next. I also implement routines in my life that accommodate for the level of energy I have. I make sure to take care of my responsibilities as they come.
When it comes to pain, I can totally relate to muscle cramps all over my body; the one thing I find that helps is diet tonic water with quinine. I dilute this in my morning orange juice and I will drink more if the cramps are more prevalent. This is the best thing I have found to help alleviate excruciating muscle cramps.
-
For a rare disease it sure seems like it occurs more often then I would have thought. It may be that my radar is up for all things ALS but it just seems more common than I thought, which surprised me.
The second thing that surprised me was how many different ways PALS are affected. No two cases alike … surprise, which of course complicates finding treatments.
The last surprise was that I drew the slow progressing straw which has given me time to deal with the changes that I am experiencing. The initial 3-5 years of life expectancy has turned into 14 and counting. A very welcome surprise.
Log in to reply.