When I look back over this year, it has been a wild ride for me.
Early in the year, I had been a gym rat, cycling and working out 3-4 times a week, and PT session following PRP injections in my knee to repair a torn meniscus. My first indication of ALS was a blood test in May where my CK levels were elevated. I thought it was due to my workouts and didn't think much of it. Next in June, my PT noticed that my strength in my legs was weakening, which just increased the weight load I was working with in the gym. My gait shifted in June as well, but I thought it was bad habits from limping with my knee. By July, I was having trouble climbing stairs and feeling weak after walking distances. I still had know idea ALS was lurking, and we had a very busy summer, with long bike rides on the weekends, and hikes in the mountains. My husband and I bought new bikes in March and were having a great time cycling trails in OR, WA and Vancouver, BC. Here I thought the weakness might be from some of the supplement I was taking, and I was suspending one by one for two weeks at a time to see if it would make a distance.
August was a wake up call for me. We finished a 25 mile ride down in Southern Oregon, and when I was getting off my bike, I couldn't support myself or balance myself and met the pavement hard- cracked a rib, bruised a shoulder and knee, some good scrapes and a bruised ego. I decided at that point to go see my doctor. She referred me to a neurologist, but didn't get in to see him until early September. In the last couple weeks of August, we traveled to Boston to a national rowing event that my husband rowed in, went to the Minnesota Fair with the grandchildren (including walking around 10,000 + steps which was exhausting). I nearly fell twice at Logan airport, and my speech was slurring such that people thought I had been drinking. By the time I went to the neurologist, I had been googling my symptoms and had a sense that it was either a brain tumor or ALS.
After six weeks of testing, and a second neurologist (ALS expert), I received the diagnosis in October. Talk about life slapping you on the side of the head. Being an engineer, I spent a couple days in tears feeling sorry for myself and getting my paperwork in for Social Security and Medicare benefits. Suspending the interviews with companies that had been recruiting me (I was laid off at the end of July) and trying to figure out what to do next. I made a conscious choice, that while this disease would ravage my body, I would not let it ravage my spirit. I will live through this the best I can, I will try to find something to be joyful of every day.
Since then, we have sold our three level town house, and bought a new house that we are remodeling. I am getting progressively weaker, my speech is just about gone. I'm not afraid of the dying process, (I've had plenty of asthma attacks where I pass out.), I am saddened that I have limited time with my husband, kids and grand kids, but I am determined to make the best of this time. I worry about the need for care givers and how we pay for that as my husband is still working. I am learning to say yes to offers of help from others, and I am learning to let little things go.
As we look forward to 2017, I wonder if I will make it to Christmas next year, as my progression seems to be pretty fast. Over a year ago, we booked a 3 week Viking cruise in March to Italy, Greece and Israel to celebrate our 35th anniversary and I don't know if I will be able to go. I have a clinic day in January and will see what the doctors suggest. I am hopeful we can do this, but would not want to get sick in a foreign country. In July my son and his fiance from Singapore will be coming here to Oregon for a wedding ceremony. They had selected a resort in Laos to do the wedding but decided to have a smaller ceremony here in the US and a second one in Laos for their Asian friends. (They both live and work in Bangkok). I am hopeful I will be able to see him married.
I feel blessed to have had a such a enriching 2016 despite ALS and I look forward to 2017 with hope.
Merry Christmas to my fellow PALS. May you find strength and joy this season.