- Year of Birth
St. Louis area
- Short Bio
I am originally from Iowa/Minnesota and moved to the St. Louis area a little over 7 years ago. I am a retired teacher and was diagnosed with PLS/ALS in 2014. We originally moved here to be close to our son, his wife and the grands. One year later I was diagnosed.
With the diagnosis, my wife and I built a ADA compliant house that has served us well in adapting to the ever changing needs of having ALS. Currently I am in a power wheelchair most of the day. I can still use a walker to walk short distances and do transfers. I still have great strength in my legs and arms but mobility is severely restricted in my legs. I do have some difficulty swallowing at times but have been able to deal with it so far.
My speech is very limited at present and is my greatest challenge at this time. I have been using an iPad app to communicate when my wife and I have longer discussions in the afternoon. It is slow going though because I type slowly. Otherwise I speak in short sentences and repeat often which is a lot of work. My son, wife and physical therapist can still understand me on a limited basis.
Last year I developed Lymphedema which requires treatments to remove fluid twice a day. I can still do most of my personal care but do need help getting dressed. I also have Hemachromatosis which is a genetic disorder that causes my body to retain extremely high levels of iron. That is now under control after a year and a half of phlebotomies every two weeks.
- How did you hear about us?
ALS News Today Newsletter
- How long have you or the person that you are caring for had ALS?