Mandy's ALS Journey: A Bucket List Dream

For those who don't know me, I'm Amanda...well...Mandy. I'm 34 years old and have been living with ALS (aka Lou Gehrig's disease) for the last 3½-ish years. Unfortunately, ALS is a terminal illness with no cure, and very few treatments/medications that are only able to slow the progression of the disease (by how much or how little they truly don't know lol), but inevitably the disease has a life expectancy of 3-5 years.

For me, it started with a super faint slur in my speech that would be there one minute and gone the next. The running joke to explain it away became that life had me needing a drink so bad that my brain decided to go rogue and start simulating drunken behavior without having any alcohol, or my consent for that matter! Which was all fun and games until, on top of my slurred speech getting progressively worse, the rest of my body began to join the party and I started losing my coordination more and more. Eventually, suffering injuries from falls as I continued losing control of my motor functions. At that point, the joke wasn't so funny anymore. Thinking I had potentially suffered a stroke, I scheduled an appointment with my primary care doctor. A referral to a neurologist, extensive lab work, and an electromyography test later, I received the official ALS diagnosis.

Over the next couple of years, I completely lost my ability to walk, use my hands, and even hold my own head upright. My speech is almost unintelligible and I now use a tablet to speak, using my eyes to type and operate it. My fiancé eventually made the decision to quit his logging job to take care of me full-time and spend what time I have left together. Financially, things have been rough, but we manage to get by on my disability benefits alone.

However, the worse my condition deteriorates, the more I wish I was able to go out and enjoy some of my favorite things, presumably for the last time. Or even get the chance to go visit with some of my loved ones who live across the state. There are a million things I would love to do, but sadly don't have the means to.

I've found it extremely difficult to bring myself to ask for help with this, as I'm not blind to the fact that everyone is struggling to get by nowadays and that asking people to part with any of their hard-earned money isn't something that should be done without valid reason. I've really never felt comfortable asking for help in general, but I'm becoming more and more aware that if I don't try and go enjoy some of my favorite things this beautiful world has to offer, that I won't get to at all as my time is growing short. Truthfully, anything helps and I am forever grateful for any help in making this 'bucket list' dream a reality. Thank you :)