My Life with ALS vol.4

Happy Thanksgiving to everyone, I hope you enjoy enjoyed your holiday. It is been a long couple of weeks, with a lot of things going on and a lot of lot of traveling.

I have to say that this season has been bittersweet for me and my family. The passing of my great nephew whom I adored was devastating for us. He simply was the life of the party and lived his life on his own terms. I did get to see family members that I haven't got to see in several years but that really is a sad reason for visiting.

A update on my stents procedures ........ I still haven't received them go figure. I at rived at the office to have my first procedure done on my left leg at 9am (after being NPO since midnight the night before) meaning I had nothing to eat or drink prior to my visiting the office.

Upon my checking in with the front desk I was told they did not have me on the schedule, just sit down and we will try and figure out what's going on. After about 40 minutes I was told the problem was a billing issue with my insurance (VA Community Care)

Needless to say I was less than please. After several calls and being placed on hold several times I finally discovered the problem.

As it turned out, the provider failed to submit a referral to community care for the change in locations of the procedure.

I am still on the schedule to have my right leg procedure done on the 30th with the left leg rescheduled for 5 January. Here's hoping for the best!

My wife and I had the opportunity to spend the weekend with our grandson seeing the joy in his face as he plays, simply is priceless. Spending time with our kids and grandson truly is the best way to spend our time.

She and I had the opportunity to babysit while the kids went to see the Tennessee / Vanderbilt game, I can not describe how much fun we had during those few hours.

I recently applied for and was excepted into a resurch program being conducted by Barrow Neurological Institute & Emory University to evaluate the accuracy of home testing for the acceleration of ALS. This will be a year long research program consisting of 80 or more participants.

I am looking forward to participating in this research program and I hope that it will help others along the way who live in remote areas or those without viable transportation and not able to make regular visits to their healthcare team.