Dancing with ALS and Life

Navigating devices with your voice. I can't begin to tell you how many times I've tried to open my iPhone or iPad and had difficulty with the tap movements. These movements were never a problem nor was it something I thought about before ALS.  Now it’s like trying to get into Fort Knox because it takes me eight long physical hand movements until I am able to enter my devices.  I currently have an older iPhone with a home button which I also will upgrade soon to a phone with facial recognition, which will be much easier to open.  I also was able to reduce some of the movements by utilizing touch ID function which is starting to slowly fade away as well.  Because although it seems simple, I am starting to lose the ability to place my finger on the button and apply the pressure needed.  When I was finally able to open my iPhone or iPad, navigating through the screens was a whole other challenge because I would lose control on my hand.  It would touch the scree...

 “The Best way to spread Christmas cheer is singing loud for all to hear.“ Buddy the Elf  12/25

This blog was written when the world opened back up after the horrific Covid pandemic.  Since Covid why do restaurants no longer provide customers with spoons and straws? Prior to Covid, I would get a fork, knife, spoon and straws. Now when I go to a restaurant, I only get a fork and a knife and maybe a straw. Did utensils and straws die during the Covid pandemic?  For someone who is losing motor function and has poor hand dexterity, I learned early on eating most of my food, including salads, with a spoon was much easier.  A straw for all drinks is a must because glasses are too heavy for me to lift to my mouth to take a drink.  Yes, I’m even talking about cocktails and coffee. I’m sure you can image the looks I have gotten when I ask for a glass of wine with a straw or need a straw for my piping hot mug of coffee! When I use a spoon, the material it is made out of greatly matters.  The metal can’t be too heavy because I can’t lift it.  But it can’t be pla...

   “ To give thanks in solitude is enough. Thanksgiving has wings and goes where it must go. Your prayer knows much more about it than you do.” Victor Hugo

dancingwithalsandlife.blogspot.com Picture of the White Bugatti Veyron  My father is a retired car dealer.  In my youth, I spent countless summer hours working at his business taking cars here and there to auto auctions.  While my girlfriends were reading Teen Beat, Teen, and Seventeen magazines with all the quizzes and tips about dating, pure pressure, make up and the latest boy bands, I was reading Car and Driver . Thanks to my father, I had an obsession with cars at an early age.  I couldn't wait until his Car and Driver magazine arrived in the mail so I could page through it to see all of the new hot trends.  During this time I was exposed to all sorts of cars such as high performance, luxury, convertibles, classics, and family vehicles.  Taking test drives just furthered my obsession.  I guess deep down at my core I could say Im a Motörhead.  Although the joyrides were fun, one thing I despised about my summer job working at the auto dealer...

 dancingwithalsandlife.blogspot.com “The soul that gives thanks can find comfort in everything; the soul that complains can find comfort in nothing.” – Hannah Whitall Smith

          dancingwithalsandlife.blogspot.com OK, ladies, all of you will be able to relate to this. Have you ever been on a journey or quest to find a perfect bra, one that doesn't dig, poke or ride up? I have a few friends who are on this journey as well. The first thing they do when they get home is take off that spandex medieval contraption because it has been killing them all day.   Also, did you know that there are webpages devoted to 101 slang names for breast?  Some of the names are a pink nose puppies, milk monsters, over the shoulder boulders, hooters, jugs, airbags, bazooka, fun bags, boobs and knockers.  I had no idea our breasts got that much attention! I know when we were tweens, and we wore our first "training bra," it was a big freaking deal, pretty much a right of passage, until we quickly understood how “f” uncomfortable the dang thing was. Why do they call them training bras anyway? What is the training? Per, Wikipedia definition...

dancingwithalsandlife.blogspot.com   “Just one small positive thought in the morning will change your whole day.” Dalai Lama 

dancingwithalsandlife.blogspot Frankie & Phoebe  As far back as I can remember, I have always been a dog lover. Throughout my childhood, my family always had a dog at home to play with and snuggle. I can only remember a brief time in my life when there wasn't the sound of clicking nails on the floor and jingles of a collar prancing around me at home. Today, my wiggle butt Aussies, two sibling companions, Franklin and Phoebe, have been by my side and have provided comfort especially when I started having health issues. When I would rest on the couch, most likely one, or both of them, would be on the couch curled up and resting next to me. I must say there's something very therapeutic about petting a dog when you're not well or having a bad day. When I lived at home with my parents, my mother had her own dog grooming business. I frequently helped her bathe, blow dry, or hold the dogs while she clipped their fur. But most of all, I enjoyed seeing the four legged customers ...

                                            dancingwithalsandlife.blogspot.com   Most folks are as happy as they make up their minds to be”  ~ Abraham Lincoln 

  dancingwithalsandlife.blogspot.com  Cool, crisp air, sweatshirts, Friday night lights and tailgating are long awaited after experiencing warm summer season of beach vacations and no school. For most Americans, the beginning of fall not only signifies going back to school, it is the start of a very important season, American football. September 4th was the first NFL football game to kick off the season this year.  My Sunday night football started slightly before on Sunday, August 31, 2025. A dive tackle came as a complete surprise, and the interception was perfectly executed. I am surprised there were no yellow flags thrown because being tackled from behind while disabled seems like it definitely warrants throwing a yellow penalty flags.  “Holding” and “unnecessary roughness” on a play. Welcome to the world of a husband who is navigating the game of ALS with his wife. The constant need to always be keenly alert of my position on the field ensuring I can safely get t...

  dancingwithalsandlife.blogspot.com   “Laughter is an instant vacation” ~ Milton Berle

dancingwithalsandlife.blogspot.com  I began to take one step forward and then one step backward and I start moving forward again a.k.a. dancing with ALS because it is constantly robbing me of something. For example, I can no longer drive, take a shower on my own, bring a glass to my mouth to take a drink, dress myself and hug my loved ones.  The list becomes endless when living with ALS. These things are all happening while I am keenly alert and aware that the disease will progress . After time marched on and death didn’t come as soon as I thought, I had a choice to make.  Do I continue to remain in the dark spaces, or do I use my faith and decide to start living the life that I’ve been given even with all the nasty things that come along with it? The next fundamental question that presents itself is what is my purpose? Everyone needs to feel a sense of purpose and hope in their day.  It is vital part of our mental health.  Ironically, this was a conversation I ...

dancingwithalsandlife.blogspot.com      “One of the most beautiful qualities of true friendship is to understand and be understood“ ~Lucius Seneca 7/24

dancingwithalsandlife.blogspot.com    In the beginning of my health crisis, there was an outpouring of support and involvement. However, when the medical condition has a slow trajectory, over time, I find some of the support and involvement dwindles away. I know this is not intentional, and I also know people didn't forget about me, but life is busy and continues to march on. I can honestly say in the past, there were times I wanted to do something for someone, but I got caught up in the daily grind and the opportunity just slipped away. So, I can relate with absolutely no judgment. When I was in this phase though I learned very quickly who my dedicated family/friends are and who was going to waltz with me on this journey by providing her/his devotion and support. A longtime friend of mine one day gave me a very special gift of an elephant along with the story of female elephants. This gift had such a profound impact on me I immediately knew I wanted to share it with all the...