It’s time to move! I wish that meant moving into a new home but It means moving on down to the den. My husband carries me over his shoulder down the 14 steps of our tri-level home everytime we leave and return. I’ve been concerned about his back, especially because it’s hard to keep good form placing me in our low car. It finally happened and as I expected, lowering me down to the car seat. He says it was only a little sore for a couple of days. Luckily he’s never had real back issues. I have experience with low back pain and how debilitating it can be. I know this is just the beginning. If he keeps on I’ll be more mobile than him. The last thing either of us need is for him to be in bed bound pain from carrying me.
We need to sell this house to buy a wheelchair van. There’s no romantic movie scene appearance to him carrying me. Just holding me in his arms isn’t an option, We would both fall down the stairs. I’ve also put on more than a few pounds since diagnosis. I don’t have the control of my body due to muscle weakness to counter my weight in a way to be helpful in that form of carry so I’m more like dead weight. This means we go fireman style. I try to wrap myself on top and evenly as possible across his back. My little poodle, abby, screams sounding like a child watching her Mother beating brutally killed and I occasionally have my head connect with a wall. It’s just bad all the way. If not for the concern of injury, I would laugh more about it. It’s pretty crazy. When we don’t have to do it anymore I’ll laugh. It will be shown in my documentary. I don’t want that edited out even though by the time I die we should be long out of here and this will be an old memory. It’s been done too long not to be shown as what ALS has caused.
Keep in mind we’re not in our 20’s. I’m so glad Tony works out 5 days a week or we’d really be in trouble. There is still a problem…
The main purpose of moving down there is to avoid the carrying. We’d be right next to the garage and I would have the great freedom of being in my power wheelchair. See if you spot the problem. On that bottom level is a large den, large foyer, a half bath and laundry room. See what’s missing? Where will I bathe? This means I will need to be carried back up all 14 stairs where the full bathroom is, or the shower I use now in the master bedroom. I’m so frustrated! I’m thinking it may still be worth it. With effort I can just use assistance from him instead of a full carry. That worries Tony too much. I’m worried about his back, he’s worried about me overusing already weak muscles. As we know that’s not good in ALS but, come on, I have to live while I’m alive.
We’ve already checked into stair lifts, it’s not cheap and supposedly it will turn off buyers. We aren’t getting offers anyway. It’s going to sell when the right person looks stair lift or not I think. We have two solutions. One is putting a portable shower in the den. I never heard of that, but he thinks it will work. There is a wet bar with a small sink in there and somehow the water will come from there then a tube coming from the shower will be placed in the sink to serve as my shower drain. The other option is to get a portable stair lift that doesn’t need to be attached to a wall to get me up. We would need two for the two sets of stairs. I would get the the top of first set and somehow curve around to get on the second lift where my transfer chair will be waiting at the top to get me down the hall to the shower.
The thing about this is it will be a big help to move both bedroom and office down and have everything out of upstairs so it will always be ready for a viewing. If we go with portable shower, Tony can use that too or shower at the gym, so there will be no need to go up there and that means a lot less space to keep show ready. The foyer can serve as his office or just at top of first set of stairs. There is still the issue of money and we are searching for the least expensive way. Portable stair lift or portable shower. This is the question. What is the damn answer? I’m just ready. I want my chair for comfort and more independence and with the lift feature I’ll have an even better window to bird watch.
Now that we’ve concluded we need to move down it consumes my thoughts and drives Tony crazy. I’m ready to plan, we need to make a decision and do it. The only thing to stop us will be money. I think we’ll be able to pull it off. I’m cautiously excited. It’s time to move!
I’m off to check prices and and hopefully get to moving on down soon.
Until next time, take care,
This article was written by April