I am Perry Lucas

living with ALS

North Carolina

So here's hoping I can do my part to help find a cause and cure for this disease.

April, 2022, I am writing to let you all know that a little more than a week ago I was diagnosed with ALS. While it was not the news we hoped for, it is something that our family will live, love and laugh our way through. While hopefully we won’t need help for a long time to come, please trust we will let you know when we do. For now, we ask for your prayers for a slow progression of this disease and for us to have patience and remain positive. This would be the best medicine and help you could give us right now. We are leaning on our faith that God will walk us through this, and know He has got us in the palm of His hand. We certainly aren’t the first to receive bad news, so we will try to follow the great examples set by many of you as you’ve tackled tough stuff.

For now I am trying to follow doctors’ orders to rest up and reserve energy. So please know that I love you, though I may not respond to your emails and texts for a while about all this.

To give you background:

While playing golf in January, I began to notice weakness in my left hand and a change in my swing. I thought I just needed a good weight training program. Then, I started feeling like I was dragging my left foot and at times slurring my speech. We had a beautiful trip to Florida in February with a few couples. “Dr. Craig” was walking with me and noticed a slight limp. Because it was Craig, a faith-filled doctor with a huge heart, it felt like God was opening a door so I walked right through. When I described my symptoms to Craig he insisted I get checked right away and arranged for me to get a CT scan at a stroke center ER in Miami.

Bob and I zipped up and once we learned there weren’t signs of an obvious stroke or tumor we zipped right back to enjoy our friends and be thankful. Next steps were with my internist who referred me to a neurologist. Throughout March and April, I did many more tests. My neurologist then referred me to a sub-specialist at the Neuroscience Institute (the ALS Center). We are blessed to have this in Charlotte thanks in large part to Joe and Joan Martin.

We were hoping for something more treatable. I look forward to working on my golf game with many of you this summer and am going to play as well as I can, for as long as I can. I am taking a medicine that we hope will help slow the progression of the disease. My doctor knows I’m interested in participating in trials and also encouraged us to get a second opinion. To leave no stone unturned we are working on that now.

We are close to our 1 year mark since diagnosis. My doctors recently told me I’m a fast progressor. By Thanksgiving I used a collator full time. I was taking all 3 approved drugs-the 3 R’s. We moved from the home we raised our 3 children in to a one story condo. I thought it would be months before I would need a wheelchair. I have been in a chair now for 2 and a half months. I can no longer speak well and use technology to be clear. It was just October when I addressed a huge crowd of walkers at the NCALS Walk for a cure. I can no longer swallow pills. My left side mostly doesn’t work so I’m praying my right side hangs in there.

Even so, I’m truly the luckiest girl in the world. I am blessed to have many friends and family who support me and lift me up everyday. My oldest child is getting married in June to a lovely woman who is about to be a pediatrician. My other 2 are doing well in their careers. All 3 come to help their dad take care of me.

In January, I asked one of my doctors if there was a repository for pALS to donate their bodies for research. He said contact NIH but the process is cumbersome. I told him I’d like to get involved with making it less cumbersome. I do not want this experience to be for naught. It feels like if all our ALS bodies were studied, researchers might finally find the cause if not a cure.

So here’s hoping I can do my part to help find a cause and cure for this disease. That would make this all make sense.

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