04/20/2026
Might be a long read but please take the time to get to the end .
Never Surrender Searching for an ALS Cure Fundraising Event Donation was hand delivered this last Friday afternoon at UW Madison by 40 ish true supporters .
Life is and will always be about choices ! Do we all ever make the right choice along the way , NO ! Can we all be everywhere all the time, NO ! And we know this ! Erin and I applaud đ all the peeps that put aside lifeâs busy schedules, their jobs, their yard work, their being somewhere else , to get on a 5 hour roundtrip bus ride to Madison and to those who brought their own vehicles just to support, not only us, but support our fundraiser for ALS Research. Erin and I canât say enough thank yous to each and everyone of you for making this choice to support!
So in a post I put out there a couple weeks ago the number , to donate, was at $38,969.00. We since then have been able to donate an even $40,000.00 with the help of couple that wants to remain anonymous. These two people have gone out of there way and made an amazing choice to donate the $1031 needed to get to $40k . I did tell these 2 that I would not mention their names in my post and I wonât at all . I just want to say that theyâre easily accessible by car,UTV, snowmobiles even bicycles and conveniently located just off the rail trail and right down the street from Walmart in downtown Fenwood WI . Their generosity has been amazing from the first day we started this fundraising event . Thank you both !! (Iâm really glad I didnât say their namesđ)
Friday was amazing ! We all were greeted at the main entrance, at UW Madison, by two representatives from the ALS Association of WI and by my Neurologist that diagnosed me . After a lot of tears, hugs and happy words exchanged by all, we wrote a big check and donated the money THAT ALL OF US TOGETHER RAISED FOR ALS RESEARCH! Again, there arenât enough thank yous to everyone that helped make this number even possible.
Just an update from my ALS progression checkup Friday morning. It went very well actually ! After seeing 9 Drs, that all have their own specific field, I only lost 1 point. My neurologist has a point system that is used for ALS patients. Itâs called The ALS Functional Rating Scale and starts at 48 points . Yes, losing points is bad , so losing 1 this time, compared to the 9 I lost 4 months ago is a huge win for me . My hands are definitely the worst things on me at this point through this journey . As stated 4 months ago , my Dr, would check my legs again at this appointment for progression of ALS . Ive been walking with a limp for quite a while now and Dr is now thinking I may have a nerve out of place somewhere in my back so she has ordered a MRI to see whatâs going on . So as far as she knows , my legs arenât showing any of the disease yet .đ! If MRI comes back fine , it may be another hip issue. I also have an appointment set to check that out as well . Grip strength has gone down quite a bit in my right hand
since last time. Went from squeezing 40lbs to 24lbs . Left hand only is squeezing 2 lbs. The ALS Association is sending new hand braces to help with fingers curling over which gets painful . Breathing in and out has went down a bit but still in normal range . Swallowing is still good. I can still talk . Which may bum some of you outđ. All in all was a great appointment !
In closing , Erin and I, again want to thank everyone that made this fundraiser a huge success! GOD BLESS
( if anyone has pics, please leave in comments)
