I am Diane Pascot
living with ALS
My biggest concern is for my family and the strain and pain this will cause them.
I am a 53-year-old mom to 2 college-age kids, wife of 22 years, daughter, sister, aunt, cousin, friend, and healthcare technology sales professional. I’ve been lucky in life to be able to enjoy traveling, working out, taking walks in the woods with our dog, obsessively completing daily online word puzzles, working hard for a great company with a tight-knit team, and most of all spending time with family and friends. I’m a terrible cook but love to bake (fortunately my Italian husband has a passion for cooking). I love movies and books, support and admire charitable organizations, and have recently become more involved in local elections.
A couple years ago, I started having isolated, strange, severe spasms in my right arm and hand. In between, I was fine and didn’t think too much of it at first (other than that it was weird). When they got more frequent, I saw my PCP who referred me to a physical medicine doctor, but there wasn’t much to see between spasms and I hadn’t lost any strength yet. So I didn’t have any answers when the COVID shutdown hit.
Over the next several months, the spasms got even more frequent and eventually I started losing strength in my right hand and arm. I knew something was wrong, but assumed it was something spine/nerve-related that I couldn’t wait to get ‘fixed’. When healthcare offices finally opened up for in-person visits, I went to see my PCP again and was referred to a neurological movement center of excellence. It took over 4 months to finally get in, then things moved pretty quickly.
After a very uncomfortable EMG test and cervical MRI, I got a call on a Friday evening of a holiday weekend from the neurologist I’d seen (who was NOT an ALS specialist) giving me the shocking diagnosis. It was a horrifying conversation that included references to a 2-5 year survival timeframe, wheelchairs, breathing machines, speech/voice synthesizers and more.
Once the shock wore off a little and I was ready to take action, I was evaluated by ALS specialists and got a second opinion confirming my diagnosis. I’m lucky to be in an area where I have 2 options for certified ALS clinics and found one of them to be a good fit with positive and progressive clinicians. That being said, there are very few treatment options available today and certainly no cure. It messes with your mind (and your body) on a daily basis.
My biggest concern is for my family and the strain and pain this will cause them. I’m determined to stay as active as possible, and to try to stretch my window till a cure is found, though that determination is tested regularly. I’m knocking on wood as I say that I’m fortunate that my progression has been slower than others I’ve encountered through websites and support groups, and my heart goes out to those in a steep decline and to their families. However, my family and I still face challenges, fears and narrowing timeframes. I was recently disqualified from the clinical trial I really wanted to be a part of and don’t yet know where to go from here. I’m also exploring alternative therapies, but the options are absolutely overwhelming and often lead to questionable money-making products or services.
I’m sharing my story to help show, as others here have, that ALS is not selective – it can strike just about anybody. And it is a thief – stealing so much from both patients and families while each person’s unique clock ticks in the background.