One thing I absolutely love to do is go out somewhere, whether it be a restaurant, movies, shopping or the beach. But for an ALS patient who is dependent on a ventilator things can be tricky. Let me tell you about what I require when I go somewhere.
First and most important i need someone who is trained to suction and provide cough assist for me at a minimum. I need a suction machine, and cough assist machine and obviously a ventilator. I have a new type of ventilator called a VOCSN which has suction and cough assist built in making it easier for the caregivers, less shit to carry around. Then I have my travel backpack which has a ton of stuff. I will list just the important stuff :
You also need a specialized vehicle that will accommodate my chair. I have a dodge caravan with a $20,000+ conversion kit to fit my extremely tall self. Ridiculous right? They chop the floor and drop it enough to fit my giant self, install a motorized ramp and add a body kit so it still looks cool. When inside my chair is strapped to the floor so I don’t bounce around like a pinball. Then wherever we go pray there is handicapped parking that has space for my ramp to deploy.
I also take a 60000mah powerbank that will keep my eyegaze computer charged, and power my electric blanket if it’s cold.
I think that’s all I need. I have ramps in the van too if we need. Sounds like alot right? Well it is, and I always travel with two people, caregiver in the back in case something happens while we are driving.
It’s all worth it, I just want to keep living! It’s much easier having visitors at my house. Seeing friends and family absolutely brightens my day. If you have reservations about visiting me, throw them out. Come have a beer or glass of wine with me, please!