Still Keeping On

 

So it's been quite a while since I've posted here.  It seems like a lot has happened - both good and not so good.  Summer 2024 was awesome - I felt really strong and was very active both mentally and physically. Toward the end of August and through September, however, the batteries started running out.

I noticed I began forgetting people - not a lot and not always. I recognize faces. I look at people and know I should know who they are, but I do not always remember their names or make any connections. even if Michele tells me who they are I often still don't make a connection. I ran into a neighbor I had lived next to for 30 years before we moved and could not remember his name.  It's very frustrating and actually quite maddening at times. 

My confusion started getting worse about the same time. I got lost several times just one street over from my house. Thankfully Pippin was with me and kept pulling me in the right direction. It's a little sad to realize that I no longer really know the town where I have grown up all my life. Some things just seem strange to me. I will recognize one building and remember everything about it - like the church or the elementary school - but not the buildings next to my house or on the Main Street. 

Later on in the fall I began losing my balance more often and then - as it often does for me now - things kind of fell apart after the holidays. My nightmares and hallucinations came back very vividly, brain fog increased and fluctuated, my left side was really struggling to work at all, and my "Lewy lean" became much more pronounced. By January I was using my transport wheelchair to start with to get around in the house, and then we brought in my power chair that I had bought for outside when I was first diagnosed. 

I kept falling, however, and was repeatedly hitting my head. I was coughing a great deal and having a hard time swallowing. The last straw for Michele was when I fell off the bed in the middle of the night trying to get to the commode and hit my head pretty badly. The kids had to come over from next door and help me get back into bed. We went to the emergency room the next day. 

After all kinds of tests I ended up staying in the hospital for 5 days. I was too weak to come home, so I ended up going to a nursing home rehab setting for two weeks. That will be the subject of another blog.

I finally made it home with a lot of modifications, and I am still using my power chair to get around. I had home health come in for about two weeks yo help get me acclimated to the changes we had to make and to help get me more mobile and independent.

Currently, my left leg dos not seem to get the signal from my brain that it has to engage and do something when it comes to walking. I can stand but most of my weight is on my right leg. Both legs are very stiff and I have a hard time moving them - they feel like lead weights - but the left leg shakes like crazy when I try to put weight on it in a standing position. I look like an Elvis impersonator. 😆

I go to physical therapy every week and that has helped with strength and some endurance. My new daily job is to do all of my breathing, arm and leg exercises, and to use my mobile pedal machine. I have a recumbent stationary bike I used to use but my balance is too bad to use it right now so I bought a Nobol PhysioPedal. It's a great machine that I like very much. I can use it from my wheelchair. 

I have a lot more I will try to write about, but it takes me a long time now to get all my thoughts here. I type VERY slowly now so that is more difficult and requires a LOT of concentration, which then tires me out quickly. It has taken me several months to complete this. In fact, I wrote the first sentence back in November and have written a few sentences at a time ever since!!

Life keeps changing for Michele and me, but we keep working together and making it work. Love makes all the difference! and I have lots of reasons to keep fighting and staying strong.