Hello World!

ALS aka Lou Gehrig’s Disease: WTF?

Hello everyone.  If you’re reading this then you have shown interest in following along with the progress of my condition.  As you know I’ve been diagnosed with ALS and I’m learning about it as quickly as it’s happening to me.  We’ll actually, that’s not so true.  If I’m being totally honest, I avoided looking at ALS disease progression and research.  I’m scared what I’m going to learn because so far it all leads to the same ending.  

Right now, we’re coping with endless appointments.  By the way if you’ve never had an EMG it’s lots of fun!  And in my case that I’ve had three EMG’s just to diagnose and then confirm the diagnosis.  Mike has been a real trooper through it all, taking me to all these appointments and waiting with me when he’d much rather be doing other things.

Did I mention that we’ve been moving our entire household in the same time frame?  So we’re surrounded by boxes, our furniture is all in place, beds are functional, the kitchen is functional, and we make frequent trips back and forth between Pensacola and Wetumpka.  I was physically unable to help with any of it, which feels so strange.  Many of you have done military moves as we have and you know it’s usually all hands on deck.  This time it was all Mike!  We got some help packing my personal stuff from family.

Since learning about ALS, I have lost the use of my right hand and most of the strength in my right arm.  My left arm is beginning to weaken as well.  Right now, I can feed myself with my non-dominant hand but it can be funny sometimes.  Again Mike is right there all the time to make sure I have everything I need.  We have ventured now into the world of wheelchair mobility including a power wheelchair, which is kinda scary because our property has a lot of hills and slopes.  There are so many things to be scared about right now and I’m trying my best not to do that.  It started out with fear of falling, which progressed to fear of falling down and not being able to get up.  My brain has a really hard time connecting with my feet. There was difficulty getting out of a chair, becoming impossible to get out of that chair, and needing help with everything that is a two-handed process.  You never realize how many things require two hands and 2 feet until you don’t have that ability freely flowing.

Ironically the VA has been an amazing resource for me and Mike.  They have connected me with the PVA representative who filed my paperwork and got 100% disability in a matter of weeks.  I have no idea how they were able to carve out one disease that gets an automatic 100% but that has been done. I’m very grateful for that, but money won’t change what I’m dealing with. Hopefully it will put less of a burden on the things that Mike and I had planned for in our retirement years.  VA has provided me with equipment resources, therapies and pretty much anything else I need.  I have an excellent team in Pensacola that is keeping track of all the services I need, and I have an excellent specialty team in Birmingham that is duplicating a lot of those efforts and producing results very quickly.

So one of the questions I’m struggling with is how do I want to live out my life?  Do I want to stay close to home and enjoy my property and all the things we’d planned for here?  Do I want to travel around and say goodbye to people that I’ve known?  It’s an interesting set of problems to figure out how to do your life with these new limitations.  

I’m trying to focus on all the blessings we’ve received and take this diagnosis as the next door that I have to walk through.  Those of you who’ve known me a long time have heard me talk about being ready to go through the door when it opens.  There were so many opportunities in my life. I was in the right place at the right time, ready to go through the door; and by taking a chance on walking forward, something wonderful came to me. I’m still looking for that “something wonderful” here and I’m getting a glimpse of some of it.  For one thing Mike has spent more time with me in intimate situations with intimate conversations and really devoting heart to heart time to each other.  All I have to offer right now is time.  You know that’s not actually true either. My body’s failing but my mind is still very sharp. I’m working as a therapist, still trying to use my gift all the way to the end.  When it becomes apparent that I cannot do that work I hope I will sink myself into something else productive.

Let me finish this segment by telling you a little bit about the place that we bought for our retirement.  We bought five acres in a rural community where we share a fishing pond with two other property owners.  We have a three-story house (basement and two floors) with everything we ever wanted.  We put in a 10,000-gallon koi pond/swim pond in the back yard. We had planned on fishing and hiking and visiting with family.  Most of that can still be done with some modifications. I have a motorized wheelchair that I can enjoy the house more freely and I’m planning on another customized wheelchair so I can enjoy the yard.  We have a second story back porch that overlooks the whole property. It’s not unusual to see wildlife in the backyard.  A few days ago, there was a raccoon enjoying the perimeter of our pond (looking for a meal).  We have gray herons and white egrets.  We see deer and wild turkeys when the season is right.  There’s so much here to enjoy.  We would love to share our home with our friends and family and invite you to let us know if you’d like to come visit.