Welcome to the Slow Progression Forum discussion page

[Dagmar]

<div>I live in Southern Arizona (although I grew up in Iowa). I was diagnosed in 2010, with symptoms that showed up 6 months prior to my diagnosis. My initial symptoms were weak feet and legs. Four yrs. later I began having swallowing issues. I continue to walk with a rollator and can eat solid food but have to thicken my beverages with a powder. My only medication for the past 15 yrs. is Riluzole and I don’t take any vitamins or supplements.

I enjoy doing my gentle exercise routines (they help my muscles relax), I knit every day and still crochet and do simple wire crafts. I like creating graphics for my blog via Canva. And I love a restaurant dinner. My mottos are: one thing at a time … and … we can do this. My favorite place is Bali (from a vacation many years ago!).</div>

[Trevor Bower]

Trevor

• Where in the world are you from
• I’m currently in North Carolina, previously in central Iowa, Coon Rapids and Adel, Shawnee Kansas, Manteca CA, Lincoln, NE
• When were you diagnosed?
• I was diagnosed in 2000 at Duke University.
• Are you on any treatments?
• I am not on any special drug treatments, however I take lots of vitamins and other prescribed medications by my doctor.
• What are your favorite activities?
• Getting Outside the home
• Do you have a personal motto?
• Never Give Up
• What is the best place you’ve visited?
• Our National Parks

[Diane Pascot]

My name is Diane and I’m from metro Detroit. I was diagnosed in 2021 after waiting out the COVID shutdown and believing something was wrong in my neck that was causing my hand/wrist spasms and weakness. I go to the Henry Ford ALS Clinic in Detroit and my current treatments include Riluzole, Radicava, Healey Reginen F clinical trial medication and weekly PT. I also take some supplements – a few recommended by a functional medicine doctor and ALCAR based on a recent Dr Bedlack webinar (in conjunction with my neurologist).

I still work full-time (remotely) but am getting ready to cut back due to the fatigue and weakness it causes – probably to 3 days/week. My favorite activities are walking in our dirt road neighborhood when it’s warm enough (yay Spring!), traveling and sharing great meals with family & friends (even when it’s best to stick with finger foods where possible).

I guess my main mottos are ‘Believe’ a la Ted Lasso and ‘One Day at a Time’ from a bracelet my daughter gave me, plus many inspiring song lyrics. My ‘happy place’ is Ludington, MI but Siena, Italy would be a close second if it were a little easier to get to.

I’m sorry this is so long – I guess I’ve been craving a group like this! Don’t get me wrong – I’m 100% grateful for the slow progression I’ve experienced so far (knock on wood … I almost hate to say it out loud for fear of jinxing it), but I do feel out-of-place and experience a kind of guilt as others have described in some other support groups/forums I’ve dipped my toes into. Huge thanks to Dagmar. I look forward to hearing others’ stories!

[Dagmar]

diane-pascot, thank you for your kudos and… welcome to this forum. Being diagnosed during the pandemic I’m sure was daunting. I like your mottos! Dagmar

[richard-l-wheeler]

• Where in the world are you from? SW Ohio
• When were you diagnosed? Jan 2023
• Are you on any treatments? NO

[LORRAINE N BERGKVIST]

My name is Lorraine. I am a slow progressor according to my neurologist at Johns Hopkins. I started losing my voice in 2019; was diagnosed in 2021. I currently have an electric w/c and I live in a very active retirement community. I take rilutek and radicava orally. I enjoy walking in the pool, bridge, family, friends, and French Club. I use a rollater to get around my apartment. I have an aide 5 mornings a week-other than that I rely on my husband.

[Dagmar]

Lorraine, welcome! I also use a rollator to walk around my home and rely on a mobility scooter when out and about. Does your community provide 3 meals a day or do you have to manage a meal on your own?

[jane]

Hi, all,

I live in a Minneapolis suburb but also grew up in Iowa. I was diagnosed in Dec 2023 but first had symptoms of muscle cramps and fasciculations beginning in 2017. I have progressed to muscle weakness in legs and arms but no bulbar symptoms. I am able to slowly get around the house but use a cane outside or a power wheelchair for anything more than a very short distance. I am on Riluzole, Radicave and a study drug called pridopidine.

I am 69 years old. Since I was able to work remotely and loved working, I did not retire until about a year ago. I am very grateful for the slow progression and the support of my family. I enjoy reading, sewing, needle work, puzzles, lunches with friends and my 4 young grandchildren – soon to be 5.

I am lucky that my husband is able and willing to do the vast majority of household tasks and errands.

I am grateful for this group….

Jane

[Dagmar]

Jane, welcome! what part of Iowa were you from? Me, Cedar Rapids. I’m glad I left the snow and cold temps behind. I like you depend on my husband for the household chores and cooking. I hope your husband is a better chef than mine – – he always says “if it doesn’t go between 2 slices of bread or in the microwave, we don’t eat” (haha)

[jane]

Hi, Dagmar, Both my husband and I were raised in a very small town named Buffalo Center and had many relatives in near by Lake Mills. Very north and very central. I got my undergraduate degree at the U of Iowa as did many of my relatives. One of my brothers (now passed) and his wife retired in Iowa City. I loved living in Iowa City in the 70’s. My uncle, Dave McCuskey, was the wrestling coach there for 20 years but had retired by the time I was there. I know a few people in and around Cedar Rapds and my husband’s brother went to Coe. Iowa was a good place to grow up.

[sandyb]

I live in Franklin WI (Milwaukee area). Diagnosed in June 2024, after 2 years of other diagnoses…dropfoot (peroneal nerve,) “don’t worry, it’ll get better.” Two rounds of PT for peripheral neuropathy, then “maybe it’s an autoimmune disease,” followed by 12 rounds of IVIG. Now this als diag, …with my 5th neurologist at a 3rd hospital group. Legs are very weak, and now thumbs and forefingers are weakening. I’m on Riluzole since 6-2024 and Radicava 9-2024. No in-house PT which disappoints me. “Exercise and stretch at home.” I use a walker now most of the time, although in the home I can do short distances by “furniture ” walking. The rollator is esp helpful for moving things around the house (Laundry, dishes).

Motto: if nothing changes, nothing changes. (Keep up the stretches!!!)

Fav place to visit = Punta Cana, but we cancelled this year’s trip. Too much walking on the resort grounds and the large showers are scary. We will still do Disney FL with rented scooter and handi-capped room.

Still smiling!!! (I’m 73.)

[Dagmar]

Bravo Sandy for your percerverence! If you need any ideas for home exercise here are a few:

https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html

https://alsandwellness.blogspot.com/2015/05/keep-moving.html

alsandwellness.blogspot.com

My Tricks for Adding Movement to My Day

ALS patient Dagmar Munn shares how she adds movements throughout her day to help her live with ALS.

[Jim Knepp]

Joanne (my Wife) and I moved from South Bend, Indiana, to Palm Coast, Florida, in July 2015.

I had my left knee replaced in December 2008, and experienced foot drop and multiple daily falls beginning in late Spring 2009. I was diagnosed with Primary Lateral Sclerosis (PLS) in February 2010, and was treated at the Les Turner ALS Center at Northwestern Hospital in Chicago. In April 2014 they changed my diagnosis to ALS. I continued working (I had a typical small-town law practice with an emphasis on elder law), began full-time use of pwc in the Fall of 2014, and retired when my voice got really bad (for the last 6 months or so of working, I used a business card that explained that I had not been drinking but that I had ALS which affected my voice).

I am not taking any ALS medicine (Radicava, etc.), and I have an ALS specific health care document that states that I do not want tube feeding or a trach.

We spend time with friends (pALS, cALS, and “normies”) who tolerate me; I read quite bit; I have a series of exercises that I do not do as often as I should; and I do what I can to minimize the strain that my disease puts on Joanne. I say that my disease is easier on me than it is on Joanne: I just have to put up with my disease while Joanne has to put up with my disease and with me.

My attitude is the difference between an ordeal and an adventure.

Joanne was born and raised in Ashland, Wisconsin, a small town (population 8,000) on Lake Superior. I like the people, the life-style, and the area. I wanted to retire there, but then ALS reared its ugly head.

[Dagmar]

Welcome Jim! Are you still able to speak/converse?

[Jim Knepp]

Joanne can understand me if I say short, simple things; other cannot. I “talk” via Speech Assistant AAC (an iPad app).

[Andrew Darke]

From Ballantrae near Toronto, Ontario. Variations in progression rate are a fascinating feature of ALS. Symptom onset probably 2015 – tripping and falling when hiking, Referrd to ALS Clinic in 2018, but still with no weakness and still racing in cycling time trials. Weakness in right shoulder noticed whie kayaking in 2020, and repeats of EMG and nerve conduction studies resulted in an ALS diagnosis in February 2021. Can still walk without cane but use one for balance when outside the house, but cannot raise arms – problems with dressing and eating. Some bulbar symptoms – voice worsening, swallowing problems. ALSFRS-R score decreased from 44 to 34 over 4 years – 0.2 points per month is slow. On riluzole and participated in the reldesemtiv clinical but will not qualify for any more clinical trials, because of disease duration, and will not qualify for new drugs under pharmacare, for the same reason. Taking alpha linolenic acid (flax oil capsules) because of research showing a link between plasma levels of ALA and slower ALS progression (although I do not conclude that is the reason that I am slow).

[Dagmar]

Welcome Andrew! Are you still doing some exercise? As for swallowing issues, this might give you some helpful ideas: https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html

For me, good posture when eating/drinking + taking my time were of help.

alsandwellness.blogspot.com

When Swallowing Becomes an ALS Issue

When Swallowing Becomes an ALS Issue

[Andrew Darke]

Yep, stationary bike and weight machines, and yes, that giraffe has got perfect swallowing posture!

[Paul Tavano]

Hi Dagmar, I’m Paul and originally from Ossining, NY but now live in Irving, TX. I was diagnosed in August 2009 at Southwestern Medical Center in Dallas. My ALS diagnosis was confirmed at the Mayo Clinic in Oct. 2009. When I asked my physician what I should expect for progression he gave me the standard 2-5 years but also said that typically people progress at a steady rate based on their personal experience. I think I noticed after about a year into my diagnosis that I hadn’t seen much if any change. I also noticed other PALS that I had met were not as lucky. I am fortunate in that I can still play golf, although poorly. My only real issues are weakness in my hands and arms and very noticeable speech issues.

I enjoy spending time with my wife of 49 years, traveling, all sports and especially my 3 granddaughters who are all active in sports and clubs. Family gatherings whenever possible are always fun. Our family is spread out so getting everyone together is a challenge. Luckily one of my daughters and 2 granddaughters live a block away and I see them often.

My basic philosophy is to live each day as it comes, stay positive, laugh often, help others when you can and let those you love know you love them.

[Paul Tavano]

My favorite place I’ve visited is Italy.

I take Riluzole and extended label CNM-AU8 and tons of vitamins

[Laura]

Hi my name is Laura (age 61) was born in NJ. Moved to north Florida 8 years married had 3 children reside now in Charlotte, NC 29 years. It started with right foot drop March 2022. )(age 58). Was diagnosed local neurologist September 2022 (after X-rays, bloodwork, EMGs, PT etc for a year) then did a second opinion at Mayo Clinic, Jax Florida Oct 23 “slow ALS) got into Clinical Trial IbudilAst been in it for 14 months.) November got on “real drug” so far doing well AFSQR score stable. A little set back in Dec 2024 fell and broke TiB/fib had a rod put in but healing well! Walking with walker and making strides with outside PT. It hasn’t been easy but I am working it.

I am on following: IbudilAst, multi vitamin, B12, Acetyl L Carnitine, melatonin, D3/K2, Radicava, Riluzole. I do physical therapy twice a week. Meet with Mayo Clinic every 3 months in addition to local neurologist.

My favorite place to visit: Italy

Look forward to meeting people! And yes “one day at a time!”😊🙏

[Micky]

Hi PALS. My name is Mike and I live in Southern Massachusetts. I began symptoms in the summer of 2021 and was diagnosed in September 2022. I was told I was a slow progressor by my neurologist at the Healey Center at Mass General. I take Riluzole, Radicava, Regimen F, Nudexta and Eliquis (had pulmonary embolisms in December) and a number of supplements. I am able to walk in the house using a rollator. Outdoors I recently started using a Jazzy lightweight power chair. I am still able to transfer in and out of the car but have started looking at vans for the future. I can feed myself with some assistance from my wife of 43 years. We recently had the bathroom remodeled including a curbless shower, and it has made all the difference for both me and my wife assisting me. I started using a bipap at night to help with breathing. Also have a cough assist which I’m supposed to be using daily to strengthen my lungs but am inconsistent with it. I enjoy going to the beach, even in the winter. Summers are spent at the lake in New Hampshire which works well for a change of pace. The calm water allows me to exercise/walk in the water. We spend lots of time with children, grandchildren and extended family and are lucky to have them all live fairly locally.

[John Tichenor]

Dagmar,

Thank you for starting this thread on the forum. My name is John, I am 60 years young and I live in Dallas, Oregon. I have lived with ALS for over 27 years. I started out with an MS diagnosis, that led to a PLS diagnosis and finally around 2019 my ALS diagnosis.

My speech is slurred but understandable, I use a rollator for short distances and a scooter for anything else. Swallowing is becoming more challenging but no major dietary restrictions. I am a former athlete so I still like to hit the gym but also do chair yoga, gardening, biking (3 wheel recumbent), aqua jogging, to keep my muscles moving—“use it or lose it” is my motto.

I am on no ALS medications but take symptomatic medication for pain and migraines. I also take loads of vitamins. I don’t know the last time I went to Oregon Health Sciences University (my neurologist) for a checkup because I don’t feel that they offer me any useful information due to my slow progression. I am very grateful to have found a group who can provide useful advice to help me navigate this process.

Blessings to you all 🙏

[John]

Hello All. My name is John and I live in North Florida. My symptom began early 2020 with a mild drop foot. I was diagnosed in 2021 still with just a drop foot. Over the years my progression has moved into both legs but I still get around with a rollator. I’ve been a part of several different clinical trials but since passing the 2-yr threshold the available trials have lessened. I trained on an exoskeleton thru the VA and completed the advanced training being awarded an exoskeleton for home and community use. I am currently participating in the Target ALS bio fluid collection program.

Oddly enough, my motto since being diagnosed has been “one foot in front of the other” & “I just gotta keep moving”. I don’t have any current issues with upper body progression and hoping it doesn’t come for some time into the future if ever.

The first time I considered my progression to be slow was when my ALS neuromuscular doctor smiled at me and said he believes we will still be talking in 20 years. I’ve taken it with a grain of salt but was nice to hear from the Dr because this guy is cautious with his words of hope.

I still work full time as a real estate appraiser with my son’s help. I’m back in college working on an AS Degree in cybersecurity. My hobbies are coaching a high school soccer team for the past 10 years, wood working, model building, puzzles, and working in my yard. I do work on my truck as well. A silver lining is because I have to rely on family it has allowed me more time with my kids and I get to teach them things like how cars and trucks work and I feel it’s brought us all closer.

[Alper Kaya]

Hi everyone,

My name is Alper, living with ALS since 1990. I am a Slow progress and a long-time survivor. I am a medical doctor, ophthalmologist (retired)

• Where in the world are you from? Turkiye (used to be known as Turkey)
• When were you diagnosed? Diagnosed in Turkiye and traveled to United States for the second opinion in Houston Tx,
• Are you on any treatments? No
• What are your favorite activities? I used to play classical guitar, I try to find another way to play music using eyetracking.
• Do you have a personal motto? Life is a miracle!
• What is the best place you’ve visited? Italy, Milano Cathedral, Cappadoccia, Derinkuyu underground hidden city.

Warm greetings from Turkiye

[Amanda]

Dagmar,

This forum was a wonderful idea! Thank you for always making The ALS News Today forums even better!

I’m Amanda, one of the moderators. I too have slow progression ALS caused by a mutated SOD1 gene. I am one of the lucky ones who are eligible for QALSody/Tofersen.

I grew up a military brat, mostly living on the east coast. I now reside in Cape Coral, Florida. I participated in the pre-fALS study out of the University of Miami. I now go there to the ALS Clinic and see Dr. Carberry and Dr. Benatar. Both have been providing me with the best medical care possible.

I started showing symptoms over a decade before I was diagnosed. In retrospect, I now know that the cramping in my mid section was my diaphragm being affected by ALS. Boy, the things we learn on this journey! I was diagnosed in December 2022 and started treatments in July 2023. I’m still able to work and get around, just a little slower. Over the past several months I have noticed my voice becoming horse and raspy. The doctors believe this is related to the ALS and are hopeful that the QALSody may help.

My motto is, “Never stop living!” and “I refuse to sink!” I try to maintain a positive attitude which helps me enjoy my life.

Amanda

[Eric Jensen]

I am from Florida, US.

I was diagnosed in 2021.

I am on Riluzole only.

I love spending time with my grandson, whom we are raising.

Favorite motto : You miss 💯 of the shots you don’t take.

The best place I’ve visited is Dahlonega, Georgia in the US. I could feel God there.

Thank you for creating this group.

[Johnny5]

• Where in the world are you from?
  Orlando since 1984, native of Colorado
• When were you diagnosed?
  First symptoms 07/2015 verified by abnormal EMG/NCV
  First diag 10/2019, confirmed 07/21
• Are you on any treatments?
  Radicava, Lion’s Mane Mushroom Supplements
• What are your favorite activities?
  Family, Helping AA/NA and ALS, Gaming, Gardening
• Do you have a personal motto?
  Never quit
• What is the best place you’ve visited?
  The Vatican. It is a work of art from top to bottom.

  10-year survivor 07/2025

[JLJ]

My name is John. I live in AL and was diagnosed with ALS in 2003 at 41 years old. My symptoms started in late 90’s in left leg. For several years, I thought I was getting older. I normally ran 10-15 miles/week and my wife and I did several triathlons. We were always active by running, tennis, golf and playing with our 2 children. We even did a triathlon 5 months before I was diagnosed with ALS. In 2011-2016, I participated in a stem cell trial at the Emory ALS Center under Dr Glass. I think the stem cells have slowed my progression. It’s hard to prove the stem actually has slowed my ALS , because I was diagnosed 8 years before the trial. Prior to the trial, I was using a rolllator, walking up to 1/4 mile, driving, working at the front desk of the local tennis center. I’m still doing about the same as I was prior to the trial. I might be a little bit slower. My voice has gotten a little raspy and slower. I have done exercises but it really doesn’t seem helpful. I take Rilutek and Baclofen at night for spasms. I use a cough assist and bi-pap machines. I’m very grateful that I’m still progressing slow. I don’t really have a motto to live by. I take it one day at a time. I pray every night for all ALS patients and for a cure.