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.

Just Plugging Along... as Best We Can

A few days ago, a friend responded to one of my Facebook posts with "...you are a saint for being both a caregiver and an FTD patient."  My response was "Not even close, all I can do is keep plugging along." I really appreciated his comment, though, because he was recognizing how difficult some days are for me, but I truly don't believe I deserve praise for what I do.

Plugging along... Isn't that we all do, including those of us with FTD or any other dementia and those caring for someone who has it?

There are days, many days in fact, that I am just utterly and completely exhausted. Some of those days, the exhaustion is more related to my FTD worsening and others are due to trying to care for my husband and his Alzheimer's Disease. Then there are the days when he and I are both having bad dementia days. Those days, I tend to fall apart and end up in bed at night, praying that he will sleep at least a few hours so I can get some sleep. 

The nights when he is more confused that usual, he tends to wake me up more than once an hour. Most times he wants to know what day it is, whether he got his pills that day, wants to complain because "they" haven't fed me in days, if I am the one who takes care of him, who else is living here and the list goes on and on. All I can do is answer his questions, reassure him, tell him I love him and that he needs more sleep. I tuck him back into bed and pray for him to be able to sleep.

The days that are the worst for me and my FTD can be many. The day after he has a restless night, my FTD symptoms are exaggerated due to my being exhausted. Other days, like everyone else with FTD, new symptoms pop up for no rhyme nor reason. 

One of the first symptoms I noticed about my FTD was falling and losing my balance. That continued for several years but then lessened in severity. I would still lose my balance, but using a cane was preventing me from falling. I was encouraged by this. I knew that my FTD was not "getting better" but was hopeful that these symptoms had run their course, making way for new ones. I know, I know, wishful thinking. This past month, the falling and loss of balance has come back in full force. When you add to that, my continued weakness in my arms and legs, it has become much more stressful and difficult in caring for my husband. 

When he needs assistance in standing or moving in his bed,  I just do not have enough strength to help him. Of course, being aware of this, I have made compensations. I purchased a lift chair for him and have taught him ways to get out of the other furniture. He does really well on bar stools. They are the right height for him to sit right onto them. It is also easier for him to get back up because he does not need to lift himself, just step down. I have him using the kitchen bar stools with padded seats and backs, along with good supportive wooden arms. Since he still refuses to use his cane, I have taught him how to go from place to place by holding on to solid objects. 

I have found that is the best thing for us. We improvise... we keepplugging along. Well, I guess I improvise and he tries to understand what I am suggesting we try. We manage, though. 

Amazingly enough, when I am having a really bad day due to my FTD, he seems to sense it. He can't really do anything to help me or to help with things around the house, but he actually shows compassion and asks frequently if I am doing okay and do I need anything. When I say "no" I also make sure I thank him for asking and tell him how much I appreciate it. 

Sometimes, on difficult days such as this, when it is bedtime, I will tell him I really, really need to get a good night's sleep and ask him to be more involved in getting himself ready for bed as well. It actually works some nights. I will wake up around 9 a.m. and realize I have slept through the night because he has as well. When this happens, I thank him profusely and tell him how much good it did for me to sleep through the night. Does he understand what he did for me? I kind of doubt it, but praise of any kind (honest praise, no false or condescending praise) is a good thing for anyone. When he doesn't do things correctly or is in a stubborn mood, I try my best to not criticize him. I make sure to thank him for trying. Always trying to keep it positive for both of us.

Sleep is an essential part of living with FTD.  When I am tired, my symptoms worsen. Sometimes I bounce back after succeeding in getting a full night's sleep. Other times I don't. Swallowing is a good example. When I am tired, I have more trouble swallowing. Unfortunately, that does not improve after I get some rest. 

Speaking of which, I just have to write about something that happens a lot. My husband has difficulty understanding words when others are speaking, he hears the noise the words make, but interpreting just what words they are is a problem, just as it can be for many of us with FTD. Because of my swallowing issues, I have to constantly clear my throat, I would guess dozens of times a day, my husband asks, "What did you say?"  He is not able to comprehend that the noise I am making is not words. Fortunately, while this should make me quite sad, I also find humor in it. Because I do, it is one thing that does not tax my patience level. I have not yet snapped at him or asked him to stop asking that. Thank God for finding humor in things.

Plugging along... that's what we do. I have given you examples of how I plug along while being a caregiver. How is it possible, though, to separate and identify the daily issues of his dementia from my own? It seems there is a lot of information out there with suggestions of ways to cope with being a caregiver. Not so much for those of us with FTD. We are portrayed as the "bad guy" in the stories. Oh, the dastardly things we do to make the life of the caregiver so much worse. Many times, it is implied that these things are done deliberately by us. 

To me, and I am told by many others with FTD, these stories and complaints leave a feeling of despair and a strong sense of no longer being loved. The worst for me, is the feeling that many caregivers and those who advise caregivers no longer see us as valuable. We read and hear often enough of all the things we can no longer do and all the inconveniences we cause the caregivers. So often, that we can feel totally worthless and incapable, or undeserving, of being loved.

I am not saying that these caregivers and advisers all truly believe these things or think they are suggesting them at all. I have to believe that they don't realize how we are interpreting their words as something negative. One thing that comes up often is that we do things deliberately. I can say with confidence that most of us with FTD are not capable of intentionally doing many of the things we do that frustrate the caregivers. Most, if not all, of us are incapable of sitting down and thinking "What can I do to irritate my caregiver today?" Even if we were capable of thinking that way, how could we understand and figure out how to enact it?  Along the same lines, something that can can be interpreted that it is deliberate is  when we are told more than one thing at a time. We quickly develop overload and can not understand any of what has been said. 

For instance, if someone were to tell me to gather up the trash, take it out to the can and wheel the can out to the street. I am still thinking "Gather up the trash? Okay, how do I do that. I don't remember, do I bring the wastebaskets to the kitchen and empty them into the bag. Hmm... or do I take the bags to the wastebaskets? I don't remember how I did it the last time. I think I am supposed to bring the wastebaskets to the bag so if it is leaking, I don't make a mess. Oh, wait, is she still talking?" What are the odds that the trash can is going to be taken out to the street without further instructions. It is just not the way our brains work anymore. "One thing at a time" is my mantra.

The role of being a caregiver or being an adviser to caregivers is difficult. There is no doubt about that. Yet, I find myself wanting those writing articles, making speeches and such to recognize that our brains just don't any longer work the way they did pre-FTD and that the "role" of being someone with FTD is difficult, exhausting and depressing just as the role of caregiver is. We also deserve recognition and even deserve some praise for doing as well as we can. I am not asking for an "International FTD Patient Day." I merely want us to feel valuable and loved.

Those of us with FTD just keep plugging along, as best we can, along with the caregivers who are doing the same.

My New Social Life

One day last week, someone asked me why I choose to rely on the Senior Van service to go to medical appointments and even grocery shopping. I threw out all the stock answers: it costs less than driving a car (even if I still had that privilege), they show up in any weather, they give door to door service, they carry my groceries into the house, etc.  This answer didn't seem to satisfy the person asking. I actually stopped and thought about it and said "because it is my social life."

Now, before you start feeling sorry for me and thinking how pathetic it sounds, don't. I have yet to have a driver who was not friendly, helpful and just downright nice. I often have the van to myself, but when there are other riders, we are all in the same boat. Once in a while, a passenger will be grumpy or rude. When that happens, I take it as a challenge. I must say, even if it sounds like bragging, by time I get off or the other passenger does, I have them laughing or at least smiling.

A good example of this happened this week. When I got onto the van at a doctor's office, another woman had already been picked up. She started griping when she thought the driver was going the wrong way. He told her we had one more to pick up. She started complaining that her home was just a couple blocks away so we should go there first. Turned out that her home was much further away than a couple blocks and the woman we were picking up lives in the same apartment complex. I started chatting with her and discovered that we had both lived in the Philadelphia area and we started talking about places and things we had in common there. By time she got off the van, she was laughing and said she hoped we got to ride together again.

My mother always said that if I didn't have anyone to talk to, I would talk to a brick wall. While that might be part of it, it's not the total picture. 

I am trapped in my home most of the time. Between my FTD causing me to not want to venture out and needing to care for my husband with the limitations his Alzheimer's Disease brings, home is where I usually belong. This is not a complaint, just a simple fact. While I do talk to people on the phone most every day, there is very little conversation in our home because my husband is usually sleeping or just unable to converse. That is a big part of why I like riding the van a couple times a week. I get to meet new people and visit the "real" world. 

Unfortunately, dementia isolates us. Not only because we frequently don't care to venture out because of the risk of sensory overload, but because others isolate us as well. I don't remember how many times I have mentioned in my blogs about how family and friends practically run away screaming once they learn of a diagnosis of dementia. I don't believe they are thoughtless or rude, they just don't know how to deal with it. I refer them to 
as ostriches because they must think if they stay away (or bury their head in the sand) the dementia doesn't exist and those of us with the disease are still the way we used to be.

If I hear one more person say, "But, I just want to remember them the way they were. It just makes me sad to see them this way."  I will probably give them a huge piece of my mind. I just want to say "I wish those of us with dementia could do that too, remember you the way you used to be because you used to be kind and loving." Most of us don't even welcome long visits, just a short visit to let us know we still exist and you still care. Maybe bring us some cookies, we can never get enough of those!

Just about all the people I meet on the Senior Van are not judgmental. Most all of us have a limitation or two and we are quick to help each other out. The drivers are mostly people who have retired early and are just out to keep busy because I know they don't get paid very well. The day last week when I visited that doctor's office? I had been dropped off at radiology. When it turned out to be the same driver who picked me up, he asked if everything went okay. He said, "You're smiling so you must have gotten good news?" I had been there for further testing because of questionable results during a prior test. The radiologist met with me and assured me it was a false positive and that all was well and I was thrilled to be able to share my good news.

When I say that riding the Senior Van is my social life, it is indeed a good thing. It is just the right amount of time to visit with someone before I get sensory overload. I love making the others smile because it makes me smile as well.  So, if you live here in Blair County in beautiful Central Pennsylvania, maybe I'll see you on the van!











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It's All About the Little Things

This past week seemed to be a lesson in accepting and celebrating the little things. It was also about not letting the petty little things drag me down.

On Monday, I needed to visit my glaucoma specialist whose office is 1 1/2 hours from home. A relatively new friend (she did not know me pre-FTD so is more accepting of me the way I am) switched work schedules around so that she could drive me there. Not only did we get a good report and the possibility of a laser treatment to improve my clarity of vision, but we both immediately thought of the same place to go for lunch and enjoyed it greatly.

On Tuesday, I needed to return to the Ophthalmology office to see my retina specialist. Yes, this was bad timing to schedule them back to back, but that's just how it worked out this time. That day brought us a pretty bad snowstorm. My sister was supposed to drive me there for this one, but she is recovering from a broken shoulder and gets anxiety when driving in bad weather. I knew I did not dare cancel this appointment because I knew I needed a shot into my eye to stop a retinal bleed, not something to be delayed by weather.  My awesome brother in law gave up his day and drove us safely through the storm.

On Thursday, here we go with another transportation story. For local trips, I try to utilize our Senior Van Service which is awesome. Door to door service and only $1 or $1.50 per trip depending on the distance. Plus the drivers are extremely helpful. They even carry my groceries or other packages into my house when they bring me home. On this day, there were two other passengers in the van and a really friendly driver. The four of us were carrying on and laughing so much, I was disappointed when we got to my destination. Kind of sad that the van service is also my social life, but these trips actually do brighten my day and my attitude. This service makes it so much easier to accept not being able to drive.

On Friday, I went to see a pain specialist to get nerve blocks into my occipital nerves. It was another day of snow and another day with an awesome van driver. It was just the two of us as many canceled their trips. We exchanged stories and kept each other entertained which helped me to not think about the painful injections I was facing. In addition to dreading the shots, I was dreading the possibility of the doctor telling me there was nothing wrong with me and that it was all in my mind. Getting that answer so many times while trying to get the diagnosis of FTD, has really made me fear hearing it again every time I see a new doctor. My sister even braved the snow to join me at the appointment so I had help with explaining and understanding things. I also had the opportunity to explain FTD to this doctor and he accepted a copy of the NIH booklet so he could read more about it. Advocating and educating about FTD always brightens my day.

To top it all off, my husband did not waken me once through Friday night and slept late in the morning. Not only did he allow me a full night's sleep, but I was able to accomplish some things that required my fullest focus before I had to help him get his day started.

Notice that I skipped Wednesday. That day was fairly uneventful, That is, until I helped my husband get ready for bed as usual. I set his nighttime pills on the counter and reminded him to take them as he was going in to brush his teeth. I did not get even one continuous hour of sleep that night. He either called for me or wandered into my room being extremely confused. I even tried getting into bed with him, hoping to calm him down. He kicked me out. It wasn't until 8 a.m. that I discovered those four nighttime pills still sitting on the counter. I immediately gave him one of the Seroquel tablets and within thirty minutes, he was calm and much less confused. 

Of course, I started blaming myself and asking myself if I could possibly be any more stupid. Then I realized, I was exhausted and not thinking clearly myself. Added to that, I learned a lesson to always check and make sure he has taken those medications before tucking him into bed. So it could be a good thing in the long run.

There were also those petty little issues I mentioned earlier. They could have really gotten me into a foul frame of mind throughout the week. I had two instances where someone was really snarky, demanding and critical... make that three. Each time, I was able to back off for a minute and dealt with what happened in a calm way. I realized that these were things that I did not cause and I was not obligate to "fix" anything. In each case, the other person calmed down without me coddling, wheedling or arguing as I usually would. I simply walked away from the situations or shut off the conversations.

Fortunately, this coming week should not require any out-of-town trips and only one scheduled appointment. Plus the friend who drove me to my Monday appointment will be dropping by to visit one day. My husband really enjoys her company and interacts with her more than he does with anyone else. She is my go-to person to stay with him when I know I am going to be gone on my husband's bad days or if I need to be gone longer than a couple hours in the afternoon. He is much more aware and able to care for himself between about noon to 4 p.m. and I still feel comfortable leaving him for only short periods during those hours.

I end this week pretty darned proud of myself for successfully identifying the good little things that happened, as well as successfully handling the bad ones.  With my FTD, I have had to learn to break tasks down into smaller tasks. Now I am learning to take pride in dealing with the unexpected little things that complicate my life, trying to keep them small and not growing into ones that are impossible to deal with.

On one down note, I really, really wish I could find a way to make people understand the limitations that FTD puts on us. This includes, not just the physical limitations, but also the emotional ones and the difficulty we have to diffuse situations. If anyone has any ideas, I would sure like to hear them. I firmly believe this is the root cause of all the pesky bad little things that try to infiltrate my life. It is even more frustrating that the ones who don't "get it" are often the same ones who proudly tell others that they do.

That issue, of course, is a huge one that I probably will never be able to solve no matter what I try. I will just have to keep focusing on the good little things and continue to try to ignore or walk away from the bad ones.