18. I am stuck.

It’s an interesting place to be in.  This blog post will catch you up on where we are at in our current lives. It’s not the blog post where you get answers, because we really don’t have any. We went to our general doctor appointment.  He felt that Roger was doing tremendously well and agreed that Roger doesn’t seem to exactly fit the protocol for what the neurologists think.  Roger, it seems, is doing simply too well.  He had some other ideas and planned to share that with our local team.  We left that appointment hopeful and I stated to the doctor that I felt like I was the hamster on the wheel and Roger quickly laughed and we couldn't figure out who was the hamster, the cheese, or the wheel.

We then went to our local rockstar neuro team. They have a diagnosis. They think. This was all started in fall of 2021. We are waiting to hear from the geneticist at the HRMF (highly regarded medical facility) and have that appointment coming up.  We are waiting for our referral to get into the HSP specialist (Back to the Future guy) which is in a location several states over. Because Spg7 can have Parkinsonisms with it and he has signs of Lewy Bodies, is it the genetic disorder, is it Parkinsonisms with Lewy Bodies, is it Mild Cognitive Impairment with Lewy Bodies or does it really matter? Did you know you can have Lewy Bodies present in your brain and not have dementia?  Who knew? To us, the diagnosis does matter for treatment, for verbiage and for a “mental game plan”. Think about it…when I say to you he has a “genetic disorder” you get one mental image in your brain and if I say “Lewy Body Dementia”, your brain goes in a different direction. One, you include him in your life and one, you dismiss him, get uncomfortable and walk away. It is what it is. There are certain words that make you want to crawl in a corner and cry.  Others, we can make a game plan for.

The conundrum that we are currently in is that I am too young to retire as we have kids in college and need medical insurance. I also don’t want to retire as I really like my job and I don’t really have hobbies. Have you seen me do crafts? I did not inherit that gene from my mom. I like playing with kids and I like teaching.  But, we want to enjoy life and travel, but to do that, one needs to work a little bit more.  We want to take care of Roger’s medical needs, but again, one needs to work a little bit more.  I am thankful I have incredible medical coverage. We want to be able to provide for him long term, but again, one will need to continue to work. But, at what point do you get to enjoy retirement without having an illness take away from that retirement?  At what point do you say forget it, sell all your stuff, travel and see the country?  Some days during my commute I'm in my head camper van shopping and planning our retirement travels.

Someone commented after reading the blog that they love that Roger and I continue to laugh throughout all this and that comment resonated with me. Laughter plus big blue eyes were attributes that attracted me to Roger to begin with and laughter has kept us going throughout the years.  Since this journey of the past 3 years started, some of the things that have caused us some giggles are:

1. When I was teaching special education virtually on camera, Roger walked by and a student gasped loudly and stated “you live with SANTA”.  Roger heard it, stopped, backed up, got right into character, waved and interacted with the student.  This student had significant physical and cognitive needs.  Every day after that when I would come on camera with that student he would come and talk to her as Santa. 

2. My nephew had his first baby named Louis, which is Roger’s middle name. Roger swears this baby is named after him (he is not), and refers to him as “his little Louis”.  This even has a specific cadence to it.

3. I bought Roger an ice fishing tent and he was so excited he put it up in our house to try it out and couldn't get it down. This was great except I had a virtual meeting to attend that day with a bunch of professionals I didn’t know...with the tent stuck up in the background.  

4. Roger helping to get the hunting shack ready for deer season with my brother in law only to realize that in MN you hunt in a deer stand and there is no way he can climb up it.  His matter of fact explanation of it had us all in stitches.

5. Roger dancing when music comes on at home….any music!

6. Roger trying to teach me how to “fold” when cooking or just trying to teach me how to cook in general. 

7. Roger being known as the “Unicorn” by his medical team and the “old guy” on his coaching staff.  

8. One doctor asking Roger if he was really flexible, me “snort laughing” inappropriately and the look on the doctor’s face when Roger informed him he was a high school kicker and telling him all about his “high kicks” to his shoulder. 

9. Being in Las Vegas for a trip not one hour and Roger meets a “lady of the evening” and had to clarify to her that he is “happily married” and he had to clarify to me that she was actually “really pretty”.  

10. Playing “taco, goat, cheese, pizza” with Roger.  

11. Roger playing a jigsaw puzzle prank on our family this Christmas. The dog had eaten a few of the puzzle pieces and they worked tirelessly to "help Roger" on his puzzle that he was doing.  He didn’t tell them about the dog’s mishap. He was able to keep that prank going for a very long time and it was a good one.

    
    

    

    
    
    
    

‘All you need in the world is love and laughter. That’s all anybody needs. To have love in one hand and laughter in the other.’ – August Wilson