[jane]

I am still able to do much for myself so the best help I have gotten from my friends is 1) being available to help lift my wheelchair in and out of my car when we get together 2) offering an arm to help me walk on uneven sidewalks, off a curb, etc. 3) suggesting activities that I can still participate in, like going out for lunch 4) picking me up for bookclub, etc 5) fixing a plate of food at a party or meeting so I do not have to stand long or use up energy doing that 6) just keeping in touch since I don’t get out as much as I used to. I hope they all know how much I appreciate their kindnesses.

The best thing I’ve done for myself was hire a house cleaner. Keeps me from have to pester my husband or kids and puts me in a much better mood all around!

[jane]

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.

[jane]

I wouldn’t say guilt exactly. I feel great compassion for anyone with ALS but particularly those who are diagnosed at a younger age and/or are progressing more quickly. I usually don’t share too much about myself and wonder if some question my diagnosis because of my slow progression. Jane

[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

[jane]

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.

[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.