Physical Challenges

One of the most difficult aspects of LBD for me is dealing with all the new physical limitations. 

Lewy Body Dementia is actually an umbrella term that consists of two different types - Demential with Lewy bodies (DLB) and Parkinson's disease with dementia (PDD). Parkinson's is also a Lewy Body disorder, which is caused by Lewy bodies in the area of the brain that controls movement. While there seems to be some disagreement in the medical field, it is most commonly understood that if you experience the cognitive issues first, and then develop Parkinsonisms, that is Dementia with Lewy bodies (which is what I have been diagnosed with). If you experience the Parkinsonisms first, and then develop dementia later, that is Parkinson's disease with dementia.

Many people can be diagnosed with Parkinson's and not experience dementia until they are quite far along in the disease. Conversely, many people with Lewy Body Dementia may never experience significant Parkinsonisms. The disease is so unique to each individual, just as each person's brain is so unique. I have often heard it said, "If you have met one person with Lewy Body Dementia, you have met one person with Lewy body Dementia." 

Unfortunately, I began experiencing quite a few "Parkinsonisms" such as stooped posture, shuffling gait, loss of balance, and tremors during last fall into December. It was these physical issues - coupled with my ongoing cognitive issues - that finally helped my neurologist put the pieces together to make my diagnosis. 

I was using a walker at that point, was stooped over barely able to walk, and had developed a resting tremor in my right hand. She actually followed me down the hallway to the examination room, watching me walk, and then quickly noticed the hand tremor. It was during this visit, combined with all the other tests she had conducted, that she wanted us to research Lewy Body Dementia.

I have always loved to walk - it's how I have always controlled my weight, cleared my head, burned off stress, worked out problems at work or at home, and had conversations with God. I would often walk 3-5 miles a day in good weather. It has been so hard to lose the ability to simply go for a walk. 

Initially I was able to walk with a cane, but due to my frequent falls and dizziness, I ended up quickly having to use a walker. Even still, I kept falling, and it took all of my energy and my strength to walk even the smallest distance. I researched a walker that was developed specifically for patients with Parkinson's, and that has been a miracle for my mobility. But even that has its limitations, because it is too heavy to easily maneuver up and down the few steps it takes to get in and out of our house. We are working on a ramp, but that's a whole other topic!

I also have a power chair that I can use to get around because I get tired very quickly now, but that is not the same as walking. It is fun to race with Theo (my grandson) on his little electric 4-wheeler, though!  The little bugger is faster than I am, though, already, and he's only 3! 😁

I try to be as positive as I can be about it, but it's very frustrating to have a nice day and not be able to simply go for a walk, or take the dog for a walk in the evening like I always used to do, even to go outside without someone's help. In fact, I need help to do many things now that I used to be able to do on my own just a year ago. 

When I labeled this blog My Walk with Lewy, it was done somewhat tongue-in-cheek because I am not really walking as much as I am shuffling along, but I am still moving!