Loss of Balance and Falls

Among the frustrations of FTD are loss of balance and falling. This usually begins to occur in the latter part of the early stages of FTD or in the middle stages. It is impossible to narrow the time line for FTD problems to begin. Unfortunately, FTD does not really have "stages" of progression like many of the other dementias have. The range of symptoms and timing of the symptoms occur based on the order brain cells are destroyed and which role the destroyed cells controlled. 

As FTD progresses, many begin to have weakness in their muscle and unexplained movement disorders, including rigidity, unsteadiness or slow movement. These, along with other causes, contribute to the falls.

Loss of balance and falling were two of my earlier symptoms. When I was still working, in fact, my supervisor had banned me from going to the upstairs portion of the office. Not only were the stairs steep, there was a curve in them. This change of direction messed with my brain every time I used them, especially going down. I didn't mind her doing that at all. All the file cabinets were upstairs so I didn't have to do any filing any longer. It didn't really impact me very much until a couple months later, after our busy season, she fired me. 

Falls and loss of balance may occur for a large variety of reasons in FTD. If we try to do anything else while we are walking, our brain can get confused since it now has to concentrate on both activities. As I often say, with FTD it is "one thing at a time." If a person with FTD is experiencing rigidity in their body, that can cause an unsteady gait. Paranoia and hallucinations can play a role. If you think someone is going to reach out at you or you see imagined people or object, it can cause a sudden change in step, resulting in falls.

Some of the subgroups of FTD have more prevalent movement disorders that can affect the ability to maintain balance and a steady gait:

In Corticobasal Degeneration (CBD), the ability to control movement develops, often developing only on one side of the body. With symptoms such as these, it is obvious how loss of balance occurs, leading to falls.

In Progressive Supranuclear Palsy (PSP), it is common to suffer falls. PSP causes progressive loss of the ability to control movement.

FTD with Parkinsonism brings symptoms mimicking those of Parkinson's Disease. These can include slowed movement and changes in gait, stiffness and balance problems.

FTD with ALS (also called Motor Neuron Disease or MND) also causes progressive muscle weakness as seen in ALS in addition to FTD symptoms.

While this is not a complete list of complication of FTD that lead to accidents, it give you a good idea that we not falling because we are being careless or not paying attention to what we are doing.

I have written before about eye issues with FTD, primarily double vision. This can start out as seeming like blurry vision because the two images are not overlapping to a great extent. It eventually can appear as two distinctly different images. The double vision is caused in the brain. Each eye sees a different image, usually about 3/4 of the image, then the brain, puts the two images together. To test this, you can place your hand of one eye and see if the visual disturbance is gone. This usually is not able to be corrected adequately with eyeglasses, including prism lenses, since the problem is not in the eyes and seems to fluctuate constantly. For me to be able to watch television, I must cover one eye. In other cases, bifocal or trifocal lenses or "invisible line" lenses can contribute to difficulty with walking and trigger falls.  You can find more detail on this subject in my blog from October 2018 "Eyes Issues with FTD."

So, what can we do to help avoid as many falls as we can? The first thing that people tell you is to pick up throw rugs, anchor larger rugs to the floor, make sure things are not being left lying around on the floor. Okay, rather obvious, but it's a start. 

There are more of the easier things to do in your home, in addition to picking up rugs. Install grab bars in the shower or by the tub. Use a shower chair so if you lose your balance, you are already down. Some find a raised toilet seat can help. Keep open pathways throughout the house so you can more easily navigate your way. A more expensive suggestion, though some insurance but not Medicare will help, is a stairlift chair. It is definitely the best investment I have ever made. One or two avoided trips to the emergency room equals the cost of the chair. Another item to consider is a lift chair or recliner that helps lift you to a standing position. Barring that, try to have a chair for the person with FTD with a firm cushion and firm arms to better enable their getting up from the chair.

You may want to consider consulting with a physical therapist for ideas of strengthening exercises or with an occupational therapist for a safety evaluation of your home as well as suggestions to help. 

The best thing someone with FTD can do for themselves is to get over the reluctance to use walking aids. I started out with a walking stick of my grandfather's, then graduated to a cane with three feet. The next step is a rolling walker, then a wheelchair. At this point, I only use those two when I am needing to walk any distance. For each of these, I suggest visiting a mobility equipment specialty store to be fitted for the appropriate one for you. There are many different types that benefit each individual. You don't have to buy it there if you don't want to, just get an idea of which is best, then find it at the lowest cost.

Exercise is often recommended as well. I will caution you about the use of a treadmill. Be very careful, make sure you hold on at all times and keep the emergency shut off cord attached at all times. I had a quite nasty fall off our treadmill. I did both of those things, but the emergency cord pulled away from my clothing without enough force to stop it. Let me tell you, that rotating belt can quickly cause damage to one's skin when you cannot get away from it.

We can also try to focus on one thing at a time, as I said above. I try to not immediately stand up and go to a different spot when I think of something I want to do. I try to pause for a few seconds so I can get my focus back onto moving.

Once someone falls, it is best to not rush to get them upright. Do it slowly. Assess any injuries and let them rest for a bit. Falling can wear one out, from the frustration and/or embarrassment alone, so staying down and resting for a a few minutes can help in getting them back up again. We keep a very sturdy, padded ottoman that can be brought to me to assist me in getting upright by myself when I fall in the house. It is a firm cushion on a wood base with four wooden legs. Lightweight, yet quite strong. It helps me to feel a little more independent and less embarrassed if I can get up myself. It is important to get over that embarrassment, but I have not succeeded yet.

Some of the frustrations I experience, when I lose my balance or fall, is people immediately saying "Be Careful!"  Really, do these people, first of all, think I am being careless or stupid?  Secondly, what help do they think this will provide? Another is when they ask "What did you do?" or "What happened?" How am I supposed to know? It comes on all by itself without any warning and so quickly that I have no clue what happened. I just know I am on the floor and having someone questioning how I cannot know what happened surely helps nothing.

One of the most embarrassing incidents since developing FTD, was walking up a slight grade on the sidewalk to our car after leaving an event. We had been sitting for over two hours, so my balance was off. Then I heard these words from behind me: "Come on, let's get around this drunk!"  I wish I could have responded to them, but all I could do was hang my head in embarrassment and cry.

An example of how quickly a fall can happen, a few days ago, I was in my bedroom, simply walking around the end of my bed to the other side. Wham! I fell onto the side of my hip and whacked the back of my head on the wood floor. I have no clue what happened. I was upright, then I wasn't. There was nothing there to trip on. It seemed like my vision became distorted or just blank, making me a bit dizzy, losing my balance and going down.  All within a second or two.