My First Mini-Vacation

To start off this update, I’d like to provide some video of the progression of this condition, to sort of put things in perspective for those of you who haven’t had the pleasure of seeing me in a while!

This first video shows me prior to having to use a walker, probably last summer.

The second video shows me at one of my worst periods. My movement was very slow and very uncontrolled.

In the final video, you can see the improvement in my movement. This video was taken on September 8, 2018.

It has been 627 days (20.6 months) since that fateful workout that started this whole thing. 627 days of Dr. offices, hospital stays, MRIs, CAT scans, PET scans, medications, IVs, physical therapy, occupational therapy, and a whole bunch of other medical necessities.In that timeframe, I have learned more about myself than in any other period of my life. I’ve learned patience. I’ve learned to take pride in every little thing I’ve managed to accomplish. Most importantly, I’ve learned how to learn. I’ve had to learn how to walk and talk again. I’ve had to learn how to be humble and accept help. I’ve had to accept the fact that I cannot do everything I used to, but I know somewhere down the line I will do everything I used to, and more.

This past weekend my nephew Jordan got married. I was absolutely thrilled to attend the wedding and witness him and his new wife, Jenna, celebrate with family and friends in Eau Claire. I was terrified the week leading up to the event. I knew the travel, the hotel beds, and the late nights would take a toll on my body, but I was determined to make it work. Meghan, my amazing wife, was also aware of these concerns, so we made a two day trip out of it. Friday morning I had two MRIs and a doctor appointment with my neurologist, Dr. Kahn. After that, about 2:30, we drove up to Menominee to visit Kellyn, my stepdaughter, at the University of Wisconsin-Stout. I was pretty tired by the time we got to the hotel room, so Meghan and Kellyn went out to dinner and brought me back some food. Not long after that I went to bed. The very next morning, the day of the wedding, I showered and changed before we headed over to Kellyn’s apartment for lunch. It was my first time at her new place, and it was great to see her and her roommates in their new home. From there, we headed over to our hotel, checked in, and started getting ready for the big event.

On a typical day, I wear sweatpants and T-shirts, mostly because they are easy to take on and off, so putting on a suit, tie, and dress shoes was no small task. Not only did I dress myself, I managed to tie my own tie. The only thing I needed help with was tying my shoes. While the girls finished getting ready, I headed down the hall to meet up with some family and have the first beer I’ve had in months.The reason I’ve laid off beer, and any alcohol for that matter, is it directly affects the cerebellum. Since I have cerebellar ataxia, one beer is all it takes for my speech to slur and slow down, and my balance and movement to decrease. It was a day of celebration, so I made an exception.

The wedding was held at an outdoor venue, and it was beautiful. I used a wheelchair to get to my seat at the wedding ceremony. After the wedding ceremony, we were invited to take some pictures with the newlyweds before heading to the reception hall. Because I’m stubborn, I switched from the wheelchair to the walker. At this time I had one more beer before realizing I still had a lot of talking to do, resulting in me switching to a nonalcoholic beer, at least for a little while.

About halfway through the night, I wasn’t able to use the walker any longer, so I switched back to the wheelchair. Since I was being pushed around, and I didn’t have to do much talking due to the music, I indulged in some more beer, this time with alcohol. About half an hour before the reception ended, my cousin Vinny grabbed my chair and took me back to the hotel bar. The whole family made it back and we had several more beers, some pizza, and some laughs. I stayed up well past 1 AM, which is very non typical for me. My normal bedtime these days is about 10 PM on a good night.

We got up the next morning then headed home, and that’s when things took a turn.

On Friday, during my visit with neurology, I was told about the plan to complete the prednisone taper. I had intentionally waited until after the wedding to do that final step, as the taper from 20 mg to 10 mg was absolutely brutal, and I didn’t want to have to feel that way on such a special day. My neurologist suggested stopping the prednisone on Monday and supplementing with oral hydrocortisone. On Monday I did just that. By Tuesday I felt like a train had hit me. Luckily, this only lasted a few days, and by Thursday (today) I felt much better. I am extremely happy to no longer have to take prednisone. In two months I will officially be steroid free!