ALS is B.S.
WHAT IS IT LIKE TO HAVE ALS??
#1- Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
#2- Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
#3- Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
#4- Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
#5- Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Have them shower you and wipe for you after using the toilet. Write down some of the feelings you have being cared for in this way.
#6- Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
#7- Put two large marshmallows in your mouth and have a conversation with your friends while holding your breath as long as possible. How exhausted are you? How many times must you repeat yourself? How does this make you feel?
#8- Stop using your left hand today, then your right hand next week, then your arms the week after, and then walking the week after that. How do you cope with these rapid changes?
#9- Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
#10- Strap weights to your ankles and climb a flight of stairs. That’s the kind of strength it takes for someone with ALS to tackle walking on a good day.
**These are just a few ways to try and understand what ALS is like for all those fighting the fight day in and day out.**
My husband, Brian Sirl (hence B.S. in the title...yes I am a dork) was officially diagnosed with this disease in February 2014, and while he is still able to speak, with great difficulty, and able to eat, the other challenges are all too real for him - and for me - and for our three girls. My name is Angie, and Brian and I will have been married for 20yrs this September...Sept 5th, to be exact, which also happens to be his 40th birthday and THE reason I chose the date - so as to avoid the age old arguement of forgetting ones anniversary. We were married at the ripe old ages of 19 (me) and 20 (Brian) in a small backyard wedding on his parents property out in Madison. While most people would think that getting married that young would lead to a divorce, we've been able to make it, and will continue to do so even with this ALS bullshit.
Our girls...oh our girls, they are amazing to say the least and smart, caring, generous, silly, beautiful, stubborn, and one-of-a-kind to say the most. Molly is 17yrs old and our first born. Such a great young lady; she is a senior in high school but attends Lakeland Community College as a PSEO student. This is allowing her to graduate this spring with not only her high school diploma, but her associates of science AND art as well. She is also our introvert and, according to her, she has RBF better known as "resting bitch face" ( haha gotta love that girl! ) The middle spot is filled with Margo who is a 10yr old DIVA. I mean really...never enough shoes...never enough fashion...never enough drama, but she has the kindest heart and amazes me with her empathy for others. Last, but very much not least, is baby Mary ( no she is not a baby any longer but a 6yr old first grader...although she did believe her name was actually "Baby Mary" until about 3yrs old and would correct anyone who dared to call her just "Mary"). She is by far the most stubborn out of the three. She is also the silliest and always makes you laugh, even when she isn't trying to. So that's my family in a nutshell...however we are not the only ones living here at the "Sirl Compund" as our friends jokingly call the property.
Brian and I moved in with his parents back in 2000 or '01 after his mom, Sheila, was diagnosed with Multiple Sclerosis and his dad, Rick, had just come home from having surgery. The deciding factor had been when Rick went outside...on crutches...in knee deep snow...to try and find their dog named Moses, a giant mastiff, who was whining because his back end had fallen through the ice on the pond. Sheila was in her wheelchair at the time and could not go out to help Rick (or beat him over the head) when he got stuck in the afore mentioned knee deep snow. So, I show up on my day off to see if Sheila needed to go to the store or wanted to head over to the library, as I would usually do when not working, only to find Brian sprawled across a piece of plywood, on the iced over pond, trying to rescue Moses. The dog was saved, Rick went to the ER, Sheila felt completely helpless and/or wanted to smack some sense into the stubborn old man; either way it was decided by Brian and I that we would leave our rental to move into his parent's home and help out. So anyway, here we are 14yrs later....Sheila, in and out of remissions with her MS but doing well over all...Rick, about to have a knee replacement surgery (don't even get me started on that)....me, a RN for 4yrs now...the three kiddos....and Brian, my husband and best friend unable to care for himself do to his rapid decline...oh and can't forget our own personal petting zoo consisting of three dogs - Kali, Harper, Stella and two cats - Oliver and Ramona.
WHAT HE NEEDS.
Brian, being in construction/remodeling did alot to this house over the years. He's remodeled both bathrooms, making one more accessible for his mom when she's in her wheelchair; converted the garage into two bedrooms, also accessible, to make room for all of us here; turned the deck into a screened in porch, and built another deck off of that. He has done so much not only for his family but for his friends as well. Helping out whenever he was asked, even if he then thought "why did I agree to this?" My Brian has always done for others without expecting anything in return...BUT NOW WE HAVE TO DO FOR HIM. The bathroom he remodeled for his mom is not suitable for his needs and has to be gutted and completely redone so that I can get him in and out of the shower when he no longer is able to himself. We also need a wheelchair accessible vehicle so I am able to take him out into the world after he gets his motorized wheelchair, and then maybe he can feel a little independence again.
As a RN working in a nursing home I can see what his needs are and anticipate things before they happen. You know the saying "Ignorance is bliss"?...so true when you're a nurse. I recently cared for a lovely person who has since passed away from ALS, and witnessed all the things to come for Brian. While I absolutely love taking care of, and giving 100% to my residents, I am not blind to the shortcomings of living in a longterm care facility. Such as having to wait to be cared for because there is not enough time in the day, not enough help during each shift, not enough hands to do everything my nursing assistants and I want to do for 28 residents; seeing family only on weekends or every other day or every three days; and unfortunately sometimes a personality just doesn't click with another and yet they are the one who is caring for you this shift...this is not what I want for my family, my Brian. I know he doesn't like the whole "fundraisers/ donations" idea for him and feels that he should do for others and not the other way around....but I told him I didn't really care if he liked it or not, I will do whatever I have to so that he has what he needs, because ALS is B.S.