Sunday, May 29, 2016

Sticks and Stones...

Every little kid hears that age old expression of "Sticks and stones may break my bones, but words will never hurt me."

I hate to tell you, but who ever came up with this expressions was lying to a kid. These days, the other kid who is hurling the bad names or nasty words would most likely be accused of bullying. Within the two extremes, hopefully a happy medium exists there somewhere.

Words do hurt. Often, the words can hurt just as much as physical wounds. Add in skeptical looks and your day can be ruined. I have written about this issue several times, so I am aware of the issue and perhaps should be able to shrug it off by now, but I cannot.

What worsens those words and looks is the already instilled frustration of being limited in the things I can do, things that I used to be able to do, almost without consciously thinking about what I was doing.

Yesterday morning, I dragged myself out of bed by 7 a.m. (way before my brain kicks into gear) to head to our church parking lot for its spring festival. I had suggested to a friend that she rent a table space and attempt to sell her beautiful handmade jewelry. I offered to help her in this endeavor, figuring I could provide moral support plus visit with some of my church friends. My contribution was an extra hand in setting up the table, then sitting in the sun and holding down a chair for the five hours of the festival. I think I did a good job holding down that chair, it didn't get up once to run away.

I had also made my usual contributions to the bake sale table. I had not volunteered to work any of the church's tables because I can no longer handle money transactions. I would either cause irate customers who were short-changed or very happy customers who got back more in change than they had initially handed to me. Many people love my baked goods and my chocolate layer cake with peanut butter frosting is usually the first thing off the table. That part of the day made me feel good, that I could still make it!

Back to those hurtful words. One of the first hurtful things was when I overheard someone say was "Look now she is using her cane. She wasn't using it before." Technically, she was correct. When my hands were full of the baked goods when unloading them from the car, walking three feet and handing them to the women, I was not able to use my cane and took the risk falling. I didn't think it was my responsibility to explain that the cane is for when my sense of balance disappears or one of my legs doesn't get the signal from my brain to move. This does not occur constantly and sometimes I take the risk. I could have turned around and explained this, but figured anyone thoughtless enough to comment on it wouldn't believe me anyway, nor try to understand.

Of course there was the old reliable "You look wonderful!" Heard this one a couple times. While veiled as a complement, when coupled with the skeptical look that adds "Are you sure you are sick?" it truly hurts. What am I to do? Should I stop dressing nicely, fixing my hair and applying a little makeup to try to look a little better so that they can believe there is something wrong with me?

Throughout the entire event, there was also something going on that made me quite uncomfortable. I will not go in to the details because if anyone from the church reads this, it will be obvious whom I speaking about. Unlike others, who don't think before they speak, I, the one with no impulse control or filter between mouth and brain, will restrain my fingers from typing the hurtful thing that continued through the entire five hours. I will just hint that it involved feeling like this person's constant stare was boring a hole straight through my heart and sole. This was from a distance, so I could not hear any words being said, but knowing that this person talks even more than I do, I am confident that they were being said.

What it boils down to is that in some cases, you don't have to actually hear the hurtful words when you can read them in the other person's eyes and the look on their face. I had intended to visit the table where this person was working, but opted to stay away, because without a filter between mouth and brain, I know I would have said some hurtful words and I would not want to do that to anyone if I was able to help it.

Friday, May 20, 2016

My Story Retold

I was recently asked to write "My Story" to be published by Dementia Symptom Perspectives.
It was published online by them and then shared again by another online site that publishes things written about FTD. They have also reposted some of my blog entries from time to time. I always say, every time I write something that if it reaches just one person, it is worth doing. It worked, I received a message from someone who had just been diagnosed with FTD and she was desperate for information. Also last week, I received a lovely message from someone who had discovered this blog and just wanted to thank me for sharing my information which was helping them understand FTD and learning how to help the family member who was just diagnosed.
Anyway, I thought I would post a copy of "My Story" here in my blog?
Everyone who has been diagnosed with Frontotemporal Dementia has a story. My story is no more important than anyone else’s and is probably not that unique when it comes right down to it. To me, however, it is a story that encompasses most of my life.
It started when, as a teenager, I came to realize there was something wrong with Grandma. I watched my grandma disappear a little at a time as dementia slowly destroyed and eventually took her life. Years later, it was my mother. A few more years and it was my favorite aunt. I was a part time caregiver for all of them. Their brother also was stolen by dementia. They were all diagnosed with Alzheimer’s Disease, but knowing what I do now, I truly believe it was FTD.
Eleven years ago, my husband, retired early. He sat me down one day and said “You have followed me and my career all over the country, now it is your turn to choose where we live.” I didn’t even think about it, I said “Take me home.” It wasn’t long until we did exactly that, returning to the small city in the central part of Pennsylvania. Population 45,000. After living in many large cities across the country, it came as a culture shock to us. In a few years, we would learn that living in a smaller town, while it has many benefits, has one huge downfall.
I went to work as an accountant. I worked there, I am guessing about six years. It was an easy drive from home, a direct route with just four turns. Six years ago, during the busy tax season, it became my habit to stop at a local convenience store for a giant cup of coffee to get me through the morning. I realized that I was struggling with that simple purchase almost daily. I solved it by buying store gift cards so that when I went in, that was all I took in with me. I should have, but didn’t, stop to wonder why it was happening.
A few months later when driving to work and the street I turned on to go up to the office was closed. I drove another block and turned up the next street, which is the street I usually came down at the end of the day to head home. The office was only two blocks up that hill on the avenue between the two streets. Driving up the hill, I started to panic because I was lost. I pulled to the side of the street and tried to work it out in my head and couldn’t do it. Finally, I drove slowly to the end of that second block, saw the ballfield at the corner and realized where I was. This led to getting lost when it was my turn to make the lunch run. I could find my way to the deli, but not the way back. A couple months later I stopped driving altogether after nearly causing several accidents. Soon after, I was blindsided at work and was fired. Although I understood why, it was handled in an ugly manner, leaving me devastated, embarrassed and unemployable.
I was around 55 at that time, the same age my grandma and mother were when Their dementia became obvious. I made an appointment with my family doctor who referred me to a local neurologist. He sent me to a neuro psychologist for testing and both diagnosed depression and insisted I was too young for Alzheimer’s or dementia. Yes, supposedly the best neurologist in town actually said that. I went to a second neurologist who concurred with the first one after a two or three minute exam. Now, I knew the largest downfall of living in a small city: not many good doctors. My family doctor, though, knew me well enough to insist it was not depression and she sent me to a neuro-psychiatrist in Pittsburgh about 90 miles away.
After a SPECT brain scan, he immediately diagnosed FTD . (He later added MND,Motor Neuron Disease). No doubt in his mind, that was it. He showed us the pictures of my brain and the next words to us were “Go home and start living you life while you still can.” He later changed my diagnosis, BvFTD w/MND (Motor Neuron Disease). Since I was unemployed, I had a lot of time to investigate FTD. Every time I read something new, I would say “Yep, that’s me!” I learned from reading that the drugs for Alzheimer’s were contraindicated for FTD and insisted on weaning off them. It was an improvement as my mind seemed more clear without them.
I enrolled in a dementia research program in Pittsburgh. Later I learned that their focus was only Alzheimer’s Disease. After two years and four visits, they basically said there was nothing wrong with me because I had passed the memory tests with flying colors. Knowing that FTD did not usually destroy the memory until the later stages, it was totally frustrating that they did not take that into consideration. As a result, the local doctors actually became correct. The cavalier way of these doctors treating me sent me spiraling down into depression. I was very lucky and learned of a psychologist, right in our tiny little town, who specializes in dementia. I only see her once a month now, but will continue seeing her as long as she is willing. She grounds me by helping me deal with the daily frustrations of coping with FTD, and there are many. The biggest frustration is not wanting to rely on others. Even in childhood, I wanted to do it all myself. This has been a difficult transition .and she has become one of my lifelines.
I found another lifeline, this time on the internet. I was invited to join an online support group for those with a confirmed diagnosis of FTD. These new friends are the only ones who truly understand what it is like to deal with the constant issues that arise with FTD. Their advice has been extraordinary. If I didn’t have them to “talk” to, I would most likely be at the psychologist’s office daily.
Every specialist would collect my money and say “Sorry, there is nothing we can do, but please come back in three months.” I decided to give up seeing all the specialists and now only see my family doctor and psychologist. My husband became my primary care partner along with my daughter, though she has to help from three states away. They are my strongest lifeline ever.
When you have an appointment with a new healthcare professional, go to the first appointment armed with information about FTD and offer to leave the info with them. The good ones will accept it willingly and will actually learn about FTD because they want to help their patient. Do not be afraid to lean on others, your care partners and healthcare partners. This is one time it does not work to be a do-it-myself person. This is a disease we cannot, and should not have to, face alone. I have deliberately not gone into all the symptoms and physical impact of my FTD mainly because I try my best to not complain and there are others who explain those more than I do. I thought it more important to share the story of how I got here.

AFTD Conference and New Friends

There has been so much chaos going on in my life right now (most of it good chaos) that I have been ignoring my blog. It is probably a good sign because that means things have been pretty good since it is usually frustrations that drive me to write a post.

I spent several weeks preparing for a trip to Minneapolis to attend the AFTD (theAFTD.org) conference this past weekend. I managed to do all the planning and arrangements myself. It took a lot of effort and time, but left me feeling like I can indeed still do some things.

The conference was one of the best experiences I have had in a long, long time. The conference is mainly to educate medical professionals, but for a few years now has been open to those diagnosed with FTD and their caregivers. There were over 40 of us with FTD and it was so enjoyable to actually compare stories and get new information from each other. Many from the online support group I have oftened mentioned here before were there, so I was able to meet them. Now they really are my friends, not just Facebook friends.

I discovered that those of us with FTD can have a blast! Being surrounded by others dealing with the same issues make me totally comfortable. This was because I knew if I said or did something stupid that they would understand and laugh right along with me. I laughed more in those two days than I have in years!

The travel went smoothly. My daughter was with me the entire way. She actually took two flights from her home to mine, then the next day took two more with me to the conference. She dedicated six days to my trip, four of them vacation days from work, and spent four of the six on airplanes. Best daughter ever!!!

I was amazed the entire trip how good her instincts are in being my caregiver. She lives several states away, so has not been a full time caregiver before. She was always right there when I needed her, but she did not "hover" which frustrates me when someone does it. She also became friends with several people at the conference and I'll bet will gladly go with me again next year.

I must tell you about "TSA Cares" which is a service provided by the TSA people. You can look it up online by searching for TSA Cares. They have a phone number that you can call 72 hours before your flights. The agents on the phone take your information and ferret out the problems that may arise during your trip. In both Minneapolis and Pittsburgh, that assistance included an agent meeting us as soon as we entered the airport. Also waiting was a wheelchair and attendant. The agent walked us right through the TSA lines, explaining the entire time what I needed to be doing. I only had to wait for one person to be screened ahead of time.

In Minneapolis, our return flight was early in the morning and we did not have breakfast before we left the hotel. The agent recommended an airport restaurant (and what a delicious choice it was!) and arranged for the wheelchair attendant to take us there, then return 45 minutes later to deliver us to the gate.

For all the horror stories in the news media about TSA, I was amazed by this service and how smoothly everything went. Sometimes our government actually does something right. I even sent a message to my congressman to tell him what a great experience it was. I figure with all the complaints they get about the screening process, it would be nice for him to hear about something good.

I did have a few falls over the few days. Two of them were while trying to deplane, once in the jetway leaving our main flight and the other trying to deplane from the very small commuter flight that finished off our flight. Fortunately with that one, I fell backward and landed with my butt on the step I had just come down. Yes, it was quite amusing and not dangerous at all. The jetway fall could have been serious, but I came away with just sore muscles and a bruised hip.

Our online support group got together the night before the conference at an Irish Pub. It required crossing two busy, 4-lane streets. Crossing from the hotel to the pub, it was dicey. The crossing signal only gives about 20 seconds to cross the wide street. With my shaky balance, it was quite a challenge, but we made it! The interesting thing, and why I go into this story, is that I actually had two small drinks at the pub with dinner. I rarely, rarely drink and when I do, it is only one lightweight drink. After those two drinks, crossing back over the streets to the hotel was easy-peasy. Made it with seconds left over and didn't stumble once. Perhaps that is the secret to dealing with FTD? Wishful thinking, I know, and I wouldn't want to start drinking all the time anyway!

Next year the conference is in Baltimore, only 1 1/2 hours away and I am counting the months. At least I'm not counting the days yet!