We thought we would blog about the equipment, help and costs associated with this disease.
Since April 27th we have acquired (not necessarily in this order):
The Volume Ventilator that is now keeping me alive and Michael the respiratory therapist, he is the bomb. I am on the ventilator 22.5/7/365.
A cabana boy, thank you Scott 🙂
A new vehicle with air conditioned seats
A regular Wheel Chair
A toilet seat riser with safety bars
4 butt cushions
A power chair
a Harmar wheel chair lift for the car
A ramp to get in the house
A lift chair
An adjustable bed
A paid caregiver
A completely new guest bathroom with roll in shower
A rolling shower chair
A bed pan
Water proof thingys for the bed
4 male urinals
A padded commode chair, backordered we just found out, crap, LOL
A sipper mouth piece system for the ventilator so I can breath AND eat AND converse.
Plus the countless things we can’t remember, NONE of these things were covered by insurance.
I am unable to walk or stand, my left arm has acquired its own personality and now has its own agenda. I cannot get in or out of bed. Fortunately my right hand and arm are hanging in there so I can operate my most awesome power chair, which matches my eyes and doesn’t make my butt look big, by the way. The fasciculations made their first round on my body and are now back in various places at varying degrees. My left foot is beginning to look like a ballerina’s in a pointe shoe. I am 99.5% dependent on other people, most of all my multi dimensional wife Lita. My son Taylor has really been a huge help also. My buddy Jasper T. Cornfield aka Scott Prophett is my personal Cabana boy. He has done so many things I can’t even begin to list them all. Love ya brother. My father-in-law researched and found my new part time care giver David, thanks Dad. I am getting to see my father in law more now. Our daughter Steph has been a big help with assisting Lita with me. My daughter Meg and her significant other Ryan were here for the weekend with their love and support. My brother Bill has organized a team to replace the wood on our house gable ends, thank you. Mary Ann continues to help however she can, her first hand knowledge of ALS has been priceless, thank you.
Upon meeting my secondary caregiver he told me how sorry he was that I have this disease. I told him I did not want him to feel sorry for me since there are people that have been living with far worse things since the day they were born. He told me he researched ALS and has a better understanding of just how cruel and brutal the disease is. I assured him that I am not dying of ALS, but living with it. As is all of my family and friends.
Just when we get things figured out, my abilities change and we have to adapt.
One sunrise at a time…….
Love to you all.