Jack, I also graduated from Duluth Central in 1976. My husband was born and raised in North Branch, MN. Most of our family still lives in Duluth and North Branch. Small world isn't it?
My symptoms started in August of 2009. I noticed that my walk was "off" and my left leg felt stiff and had foot drop. My husband noticed in right away. Like I was slapping the pavement when I walked. I had fallen over backwards twice that Fall and after the second time, made an appointment with my primary care doctor. He did the routine MRI for MS but that came back normal. So I went to a neurologist and had a very extensive physical exam. This neurologist has been practicing for 35 years and is very good! After 2 visits he told me he thought it could be primary lateral sclerosis or hereditary spastic paraparesis. He then referred me to a neuromuscular specialist at the University of Washington. For 2 months I had several tests done. 2 MRIs - one of my cervical and lumbar spine, blood tests , spinal tap, EMG, etc. The preliminary diagnosis was PLS. Now I go to the University every 3 months for a check up. Actually I go tomorrow for one. Since my diagnosis in July, I have progressed slowly. I have fallen several times (backwards) and will talk more about that tomorrow. My left leg has had increased spasticity (Baclofen has helped for the most part), but a few weeks ago I felt like tin man walking. I had a great massage on my legs to loosen things up. It really helped and now I plan to do this on a weekly basis. I am moving slower these days and have been having some difficulty sleeping. I toss and turn after being in bed for 4 hrs. or so. My hips start to ache and just can't find a comfortable position. Everyone progresses differently with this. I felt really good in Aug-Oct this past year, and since then haveslowed down a bit more.
We are planning a trip to Minnesota in April, so if you would like we could exchange info and meet for coffee. I have not met anyone in person that has PLS. Take good care of yourself. I look forward to our friendship.
LouLou