First, I must say that my version of ALS began in my left foot. So, all of the medical equipment may not be applicable to you. It all depends on which place your ALS started, and where you are in your ALS journey. I’m 11 years in my diagnosis this month. Since my foot was where it started, I went to my primary doctor, and he supplied me with referrals for physical therapy and to a therapist who developed prosthetics. I began therapy and made an appointment for the prosthetics company. When I went there, I received my first apparatus: It was a clouded white prosthetic to wear on my left leg and foot. The prosthetic had a swiveling hinge at the ankle. My therapist told me that I had “drop foot” and the hinge was to help me keep my foot up. Previously, I had been tripping over everything, especially stairs. Afterward, I hardly ever tripped. Next, I fell while walking up to my daughter’s school. I decided to use a rose-covered cane, figuring it would keep me upright, in addition to wearing my prosthetic. When both failed, my doctor then sent me for an EMG, electromyography. I had, by that time, been to see a neurologist in Philadelphia, and he sent me for another, long, 2-hour EMG. I was using a walker at that point in my journey.
Then, after two weeks, I went back to my neurologist, only to hear the dreaded diagnosis of ALS.
My husband and I had decided to put in an elevator, but we determined it wasn’t cost-effective. So, then we chose to move our bedroom downstairs, and found an aide to come in to bathe me and wash my hair. Mom found, online, a shower and a chair set, in which a nurse or an aide could bathe me in and do my hair. This set included a mesh chair with an open space to clean the genitals. It also came with a shower curtain, and a hose that would attach to a water source. For me, it was our kitchen sink. To catch my bath water, a plastic, blow-up tray was under me and my chair.
When I couldn’t sleep in a normal bed, we ordered a hospital bed, which was delivered and set-up in our new bedroom, aka our dining room. When I lost the ability and the desire to eat, I was given a gastrostomy (G-tube) in which my liquid food, water, and medications went directly into my stomach.
I was still able to move my upper body, while my legs and hips had become utterly useless, we decided to get me an electric wheelchair, which I could drive by myself. Oh, the freedom! I enjoyed that so much! Eventually, I needed a more sophisticated electric wheelchair that would grow with me as the disease progressed. For a while, I could still drive myself. As I lost function of my upper neurons, the drivers knob had to be placed behind me so that my dad could drive me.
I went to the hospital because I had pneumonia. I don’t remember them asking me if I wanted a tracheostomy or not, but my mom (who had a power-of-attorney over me, and she could do anything with me when I was not able to speak for myself, for example, I was unconscious) told me I had said yes to the tracheostomy. I can overrule her. This time, however, I wish I had gone with her and not had the procedure done. Mom is always right, I’ve learned from years of ignoring her wisdom.
After the pneumonia had cleared up, I then had to go to another hospital to see if I could get off the trach. I couldn’t. I did develop three bedsores, which would take no less than two years to heal. Right now, I’m going on three years, but my wounds are small.
When I couldn’t get off the trach, I immediately needed two nurses: a trach-trained nurse and a wound care nurse. Both have become friends, as are my aides. We’ve been together for years.
The addition of a life insurance policy is important. I’ve had my policy since way before I became sick. If you don’t have a policy, it may be difficult to get one after you are diagnosed. It’s also important that you have a Will and a Living Will.
The last device is an EyeGaze computer. Without it, I’d never be able to write, email, keep up with friends and family, and keep up with the daily news.
I’m so thankful to God for all He has blessed me with!
Ephesians 5:20 – Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ.