Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We decided to do this since at times it is difficult to answer and respond to everyone’s kind phone calls, emails, texts and to inform many of you why you have not really heard from me due to my new role.
Jay and I have had a very eventful year. Many symptoms that have occurred with Jay, as a medical person, I felt I knew what the diagnosis was going to be...and praying that I was wrong. But after Many months of testing, no firm diagnosis, and the inability to get into either of the Mayo Clinic’s, or the University of Miami, we finally, after getting back to the Chicago area, did get the diagnosis of ALS. Jay had only one symptom in 2011 which after a couple of tests, was given the diagnosis of “Diabetic Neuropathy.” Spring of 2017 some additional symptoms were seen with additional symptoms displayed towards the end of the summer and early Fall of 2017. As I said, after many months of test after test with no diagnosis we finally got our answers.
Unfortunately since we have been back to the Midwest which was the end of April, it has been a downward spiral. Jay no longer is able to swallow food or drink and has a feeding tube. He has left sided weakness which has been difficult for him since he is left handed. He also has left foot drop in which he has a special brace which helps him with that. Ambulation is extremely limited and has to use a Bipap machine since the ALS has severely affected his breathing. His speech which has been affected with slurring was noticed, and at this time is very limited due to his breathing. He now has a Motorized wheelchair for him and we have recently bought a New handicap Van. The difficult part, is seeing this man who was the man who did everything...repairs not only in our home, our cars, our boats, jack of all trades and extremely proficient, but also has been very helpful to our neighbors...he is now unable to do any of these. On the Brighter side, He still has his special smile and his HOPMAN hand gestures that we ALL can read!
I am telling you all this not for your sympathy or any donations, but to keep you informed and for your prayers for both of us. For Jay, so this difficult journey is as painless physically and emotionally as possible and for me to be the best caregiver for him.