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>

[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?

[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

[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.