Thanks for the replies. I guess I'll tell you a little about us. We are both 59 and met while on active duty in the Air Force. My husband retired after 21 years of active duty. I got off active duty after 5 1/2 years to be a stay-at-home mom but completed 15 1/2 in the reserves before retiring. We have two adult daughters. One is married and a teacher. The other is taking a gap year between undergrad and graduate school and living at home. She had planned this, but it is so wonderful to have her home for this year dealing with all the changes. Just having another person to talk to and binge watch Netflix shows with is a blessing.
We noticed my husband's symptoms, fasciculations and arm weakness, last December. I googled it and scared myself to death. I distinctly remember telling my best friend the day after Christmas that I thought he had ALS. Somehow I just knew. The first neuro appointment was on January 12, and after a 15 minute exam the very young doc said, "I'm concerned you have ALS." And everything changed. It took until May before the EMG showed it was ALS, but even though I would be hopeful when alternate diagnoses were mentioned, I knew. Looking back I can see there were changes in the summer of 2016. That fall my husband said he was having trouble remembering words and names, and I told him everyone in our age group was experiencing that. I didn't realize his was different until about March. By the time the diagnosis was confirmed it was very clear he was having cognitive problems. He stopped work on June 19th, stopped driving in July.
The physical changes are pretty much confined to his upper body at this point. He can't raise his arms, comb his hair, put on shirts or button tighter pants buttons. Today I discovered I will have to start brushing his teeth for him too. He has trouble holding his head up and has a brace for when he needs it. He hates it. He is fatigued and sleeps 10-12 hours a night. He has trouble chewing, but it seems more a brain thing than a mechanical thing. It's like his brain isn't telling him to stop chewing and swallow. He is a talented pianist and he can still play the piano, Praise the Lord! It makes me so happy to hear him play.
Since he's a veteran we are blessed with VA benefits. Renovations to our house curtesy of the VA should start in January. It has been a paperwork nightmare, but we are finally there and I am thankful.
I have met wonderful CALS at the ALS CALS support group meetings. I haven't missed one since June. The are all so supportive and caring. There are many whose PALS have passed, but they still come to help those of us on the journey. I am so grateful to them and all of the CALS here. I have supportive friends and a supportive church family, but it is special to be able to talk to CALS on here and at support group who GET IT!!
I struggle with balancing the planning ahead (I am a administrator and planner by nature) with the living each day and being in the day with my husband.
Blessings,
Mary
