Updated: 15 hours ago
At the end of 2019, I saw Erin perform at Jazz at the Bistro and she mentioned this project, where she was writing or covering songs for people for special occasions. Immediately I knew I was interested because I know what a challenge it is to watch someone you know die in such a terrible way. I had watched my own mother die of Huntington's Disease and it was horrid. My own ex-wife, father and other family members were only able to create more stress and trauma. That experience made me realize how lucky I am now. Since most people with Huntington's Disease continue driving longer than they should, I picked out an apartment that was walking distance from the Movement Disorders clinic and I gave up driving because I didn’t want to drive too long and kill someone. However, all my kids and friends had to commit to driving places. I subsidized it by using a taxi before the pandemic. It was still a huge commitment.
I started running and doing yoga, but because of the HD, it was useless to stand in the back of a class because the instructor didn’t understand how the Huntington's Disease was impacting my workout. So I hired a person to come to my apartment three times a week to do private lessons. She was amazing at putting routines in place that accounted for the Huntington's Disease. She helped me work against declines in my balance and built my core strength and other areas to stave off the Huntington's Disease.
I had a friend who was an OT who suggested I get a swallow test, because most people with Huntington's Disease aspirate food. So when they found no aspiration, only a little bit of food hanging at the top, they gave me exercises to work on, which I have done 3 times daily for the last 4 years.
I have a friend who recognized that part of my problem was an actual hearing loss, it was not just the Huntington's Disease. So, I got hearing aids which were a big improvement. I attended speech therapy to get exercises to help with pronunciation and with word recall. I do them every day. I started by running 3 miles, 3 times a week, with just under 10 minute miles. But because of the Huntington's Disease, I started having hip pain. So I went to a running clinic and a regular PT so they could help. I got an orthotic for a shoe. My personal trainer and yoga person integrated exercises into my workouts to assist with the pain.
I paid for me and the kids to take a Mindfulness class to help us manage the stress. A friend suggested I download the meditation app, Insight Timer, which was a huge help for me. The HD made it difficult for me to clear my head, but the app has guided meditations, which worked so well for me that I was able to end my sleep meds.
On the emotional side, I went to Jazz at the Bistro for the first time just as I was moving out in 2016. I loved it, so I have had season tickets ever since. It is such an amazing venue. It’s been so much fun rotating my tickets to the people in my inner circle. Those shows are so such an amazing break for everyone.
I also started taking part in a local Black Lives Matter group. It is one of the most supportive, friendly communities I have ever seen. Just as I divorced, the predator won the election. I was so devastated. I was concerned I might not be coherent enough to vote in the next election. I don’t know how I would have survived the last several years without We Can. Everyone there has been so supportive of my struggle.
So when Erin talked about her project I thought this would be a great opportunity to say thanks. She spent so much time getting to know what was happening and what I wanted to do. She learned about what type of music I like. She came to me with an amazing song and we talked about possibly adding a saxophone. Then she said she might know a way to get David Sanborn. I was all in.
What an amazing gift to me and my community. I want thank you for all of your love and support over the last several years. You will never know how much it has meant to me.