ALS and koi

We have Koi fish again!!

So much has been happening in the world of ALS at our house. It’s mind boggling sometimes. I now have the Hoyer lift to help me get off the floor if necessary. Although we haven’t had to use it, which is wonderful. I have a new primary care doctor in Birmingham, and I have moved all of my care from Pensacola to the Birmingham ALS clinic. Pensacola was really a great place for me to get this diagnosis because they got a lot of balls in the air very quickly for me. I will say though that when it comes to the prosthetics arm of the Pensacola VA, they’re slow as all get out. Birmingham on the other hand, has been able to make things happen so fast that I often get phone calls on my way home from the appointment to set up the services that are being requested. I can’t say enough good things about the VA. In my shift from being a provider of care to a patient, it’s gone smoother than I ever expected. Sure, I have a jaded view of what VA does for patients because I’ve heard so many of my patients complain about how long it takes to get things done. In some ways, I feel guilty for saying that I’m getting excellent care when some of my patients have not. Nonetheless, I’ve been told that the quality of care had something to do with me being an excellent provider to other patients. I hope that’s the truth. I know for sure I did the very best I could on each and every day that I showed up for work.

So back to my headline. Those of you who know me remember that I am in love with my fin babies. We put in our Koi pond in Wetumpka last March. And finally, the Koi have been delivered. Moving them from one place to another turned out to be a complicated process so we decided to hire professionals to do it for us. Before I got sick, we had all intentions of doing a fish roundup and transporting them in tanks and so forth. But with Mike being my 100 percent caregiver, there’s just no time to fish wrangle. Twelve of our largest fish were transported a couple weeks ago. Supposedly, 14 more are in the Pensacola pond to be moved. I don’t recall having that many fish; but apparently I do. Someone who will go nameless with the initials JK had some fish that I adopted. So, that’s where the extra numbers come from. Yesterday I was able to sit out on the back porch and watch them swimming and eating and it just did my heart such good to be reconnected with them. As the weather warms up, I anticipate sitting out on the back porch and enjoying the fish in the pond and the wildlife and everything else that has to do with being outdoors.

I’ve been having some anxiety attacks related to feeling vulnerable even though I know what’s happening. In the process, I’m unable to stop it. This is confusing to me because I always felt that it was something you could remind yourself “you’re OK”, “you’re not dying.” Etcetera. But, in the moment I’m not finding it very easy to do. The most recent panic attack had to do with getting a shower. My balance is already bad; but I have a shower seat that I sit on when Mike is cleaning me up. This latest time we used a transfer board that left me sitting unevenly on the seat and made my balance problems even more extreme. I had this sensation of slipping and falling even though Mike was trying to reassure me that I’m not moving, I’m not sliding. Unfortunately, if you’ve ever bathed a baby, you know that they are slippery and limp and sometimes unhappy to be in the bath. Now multiply that times 10 since I’m 10 times larger than a baby. I was a big old wet, slippery baby. And unhappy about it. We’re considering sponge baths for a while until our bathroom remodel is started.

In regard to remodeling, we’ve gotten our 3^rd contractor to come by and talk about the projects we need doing. Once we have three bids submitted to VA, hopefully tear out and rebuild will begin. We’re reconfiguring the bathroom for a zero-entry shower so I can roll in with a wheelchair and shower without transferring to a bench. Similarly, we’re moving the toilet to a location where we can have grab bars for more security. And then re-flooring and reconfiguring the rest of the bathroom so that it’s waterproof. If I haven’t conveyed, I’m apparently a very messy bather.

Some more good news has happened. We made a deposit on a wheelchair van. And we expect to have it in 3 weeks. What this means is I’ll be able to use my hopped-up wheelchair and take it places so that we can get out and go do things. I’m looking forward to not being housebound as much. We’ve settled on a Honda Odyssey Touring van with a side entrance. Silver Exterior with gray leather seats. I hope I get to spend some time enjoying it.

In the last few days, I have spent my time in the hospital bed round the clock. I’ve become way too familiar with Netflix, Prime Video, Paramount Plus, Peacock, Apple TV and Sling. Apparently, because of the writer’s strike and the actor’s strike, there was a huge gap in American made movies and series; so, almost everything I’m watching now is dubbed and translated. Normally, I don’t like foreign-made films. But I’ve lowered my standards since I spend a lot of time watching TV. I’m looking forward to being back outdoors and spending time with friends and family.

We’ve had some visits by friends and family, and that’s been nice. My son and his girlfriend came for a couple of nights while Mike did a gig in Mobile. The following weekend, my daughter and grandson came plus her boyfriend to help us celebrate our anniversary – 41 years! Can you believe it? When Mike and I first got together most people thought it wouldn’t last. I guess we proved them wrong. It’s been really good for Mike to have his family close by to offer him support and encouragement. We’ve had his dad and step mom over for dinner a few times. And he spent time with his brother watching football. These are good times that will bear fruit for Mike when I’m gone and give him the support he needs right now as things are getting tough.

I forgot to mention that a couple weeks ago Mike took me to have a mani/pedi I definitely needed. I picked a bold red shade instead of my usual pale pink. It was pretty difficult getting into the pedicure chair but with some help from the manager we were able to wrestle me in to place pretty much. The end result was a Lovely FU to ALS and evidence of being pampered.

I am taking the trifecta of ALS medications that are supposed to help slow down the progression of symptoms. I’ve noticed that the deterioration of my left hand is slowing a bit. Right arm and right hand are pretty much useless. Right leg is now 90% useless. My left hand is probably 75 percent impaired. Mike has to feed me, bathe me, change me, help me in and out of the bed, administer all my meds. You get the picture. I never anticipated being totally dependent on someone else. And I’m still having a hard time getting used to it. My therapist works with me on thinking about where my power still lies and how to tap into it. That’s part of why I do this blog, because I want to make sure that I share insights into ALS and help my friends reconsider what they take for granted. I never realized how clueless I was about my own physical well-being. I remember when I was pregnant for the first time. I thought if I read all the books and did all the things they said you’ll have a healthy baby, that you had this thing nailed. And yet, we had an emergency at our first child’s birth and nothing was guaranteed. 40 years later I’m experiencing it again. No matter what you think you’re doing to promote your health, something can catch you completely off guard and wipe away your independence. I don’t want any pity; I just want to open eyes and ears and hearts.

It occurred to me sometime last week that several years ago, I participated in the ice bucket challenge for ALS. The idea was to bring awareness to people and to help raise money for ALS research. I had no idea how much this was going to affect me personally. I hope that those of you reading this will take the time to learn more about ALS. Donate to research if you feel so inclined. It can strike anyone without warning.