Sunday, July 31, 2016

Ahhh... Ancient Chinese Treatment!

Some people, especially some who have FTD, do not want to use the word "dementia" in the name. I have heard several other words being used, including disease and degeneration. To an extent, they are correct, it is a disease that degenerates the brain which leads to dementia. Dementia is not really a disease, it is a symptom of other diseases.

My choice? Who the he** cares? It is what it is... it does not matter what you call it. Some people resent the word dementia because they do not want to be thought of as demented. I will agree with that, but then again, I don't want to be thought of as a degenerate or diseased either.

It is bad enough that the terminology of FTD did not exist for years. Most of those diagnosed were diagnosed with Pick's Disease. Often times, when people tell me they are not aware of FTD, I ask them if they have heard of Pick's Disease. Many times they have. Many times their reaction is "Whoa, that's a horrible disease!"  Yep... that's FTD! Those diagnosed with FTD w/MND (motor neuron disease) like me are looked at skeptically. I ask if they know what ALS is. Of course they do, same reaction brought on by the mention of Pick's. Well, combine the two. If you are one of those who think that FTD does not exist because you have never heard of it, go ahead and call it Pick's Disease with ALS. Doesn't matter to me, there still is no cure and it is still a terminal disease.

Okay, that's the rant for today. Someone set me off on it yesterday but at least now he believes I have something wrong with me instead of thinking I was making it up. Enough ranting...

I am considering a "new" treatment. It is actually an ancient treatment, but it will be new to my approach to FTD.  Reiki is an ancient Chinese therapy that works on the body's energy. To simplify it, the stronger your body's positive energy, the easier it is for the body to heal itself. Reiki is being accepted more and more by the mainstream medical field. I know of it being practiced in nursing homes and hospitals right in our local area and am sure it is more so across the world. I am meeting a master of Reiki this coming week who is interested in using me as a case study for an extended training program she is taking. Reiki has become more popular as of late, leading to it being bastardized away from the original Chinese methods. The training (I think it is a year long if I remember right.) she is getting is based on the original.

As part of this training program, she must do three case studies and has asked me to be one of them. She was aware of me and my struggle with FTD because she is a mentor for a close friend of mine who also practices Reiki. We had met a couple months ago when she visited my home along with my friend. She amazed me with her knowledge at that time. As far as I know, all the work she does on me will be free to me or at least affordable. I think this is a wonderful opportunity for me and hope it works out that we can do it.

No, I am not hoping this will "cure" my FTD. I am hoping it will lessen the severity of its symptoms. I have heard from one woman who reports that Reiki has improved her balance and walking, including less falls. Anything that improves the quality of life is definitely worth pursuing in my opinion and with this, mine is the only one that counts! I will definitely keep you posted as it goes along.

Sunday, July 24, 2016

How Do We Explain?

FTD has got to be one of the most difficult diseases to explain to someone. I have written and said so many times about the comments I get, like "You look so wonderful, are you sure there is anything wrong." or "You seem fine. Can't you help me with this like you always did before."

This part of the difficulty is not just with FTD. When I was fighting cancer a few years back, I got the same thing. I tried to back away from some of the committee work at our church but met so much resistance that I gave in and kept plugging along. They promised they would give me more help to get the things done that were my responsibility. I should have known better. I actually walked away from an event one day. It was being held at a church member's farm and had turned out to be a wonderful event.  My friend, who was also on the committee, had actually taken care of bringing the necessary supplies, paper products, basic foods, coffee pot, soda, etc. She did this even though she was recovering from surgery. Part way through the event, she became ill and somehow, once again, it was assumed I would take over. I was worn out just from carrying my folding chair down the hill to the barn where the picnic area was, so there was no way I could deal with everything. It seemed as if everyone was barking orders at me. For a while I was able to keep everyone satisfied. My friend had brought soda, bottled water, coffee and hot chocolate. The supplies had dwindled, but it was nearing the end of the event. There was still some water and plenty of coffee and hot chocolate. I was ordered to run to town and buy more soda. It was the final straw, I picked up my chair, hiked back up the hill and left. I never did organize another event. I wonder how long they waited that day for me to show up with a trunk full of soda?

This is the kind of thing that I still get. People assume that I can still do everything I used to do because I "look fine" and all.  I do not keep my disease a secret. I talk about it every opportunity I get to try to get the word out to the public that FTD exists. Very few of the people I know have not been told about my brain disease. Yet when I cannot keep up with things, start stuttering and searching for words, or interrupt what they are saying because a thought has popped into my head, they become resentful and sometimes actually confrontational. When my legs don't get the message from the brain to move and I stagger or stumble, I get looks like "What is wrong with her now?"

I totally understand these things from strangers or people who do not know me well. I even understand that many people whom I have told about my FTD have never bothered to find out what it is by looking it up or reading literature I have given them. I feel hurt that they haven't made the effort, but I understand their ignorance of the disease.

It is the family and friends who I have attempted, many times, to explain the disease to and the limitations that come with it, that just frustrate me to no end. When listening to someone go on and on about a subject, often something related to the subject will pop into my mind. Yes, it will seem rude, but I will often just burst out with what I am thinking. It can be something to agree with what they are saying and sometimes to disagree. As many times as I have explained it to some people, they still get angry when it happens. People, it is not me interrupting you, it is the damned disease! I try and try to stifle the irritating things I do, but most of the time it does not work. What is so difficult about saying "Okay" then going back to what you were saying? I don't need you to tell me I am being rude or tell me "stop and let me finish." Well, actually, you could say that. Just don't say it in an insulting way like was done to me today by someone I thought understood my disease.

I am doing the best I can, folks! Some days are better than others. Some days I can actually go to the grocery store. Some days I can actually clean a room or two in my house. Some days I can have a "proper" conversation with you. Notice that I said "some" days. Other days, I am lucky that I get out of bed and get dressed. Yes, if you stopped by and saw me sitting on the couch, I might look "normal" to you. (Whatever normal is supposed to be..) If only it was visible how none of my muscles seems to want to work that day, how I feel totally exhausted which leads me to feel totally useless and depressed. Yes, I do stay in bed for twelve hours some days. Some days it takes my body that long to recharge. Some nights, out of the twelve hours, I will have had six hours of sleep.

How can we explain or get across to people that there are illnesses that cannot be seen, illnesses that cannot be fully understood until you have one, illnesses that slowly destroy your brain and steal away the abilities we always took for granted? How can we not feel hurt when we hear you make disparaging remarks to others as you turn away. Our brains don't work properly, but we can still hear. We can also sense things. We can tell when you are repulsed or when you are irritated. If we had a broken arm and a broken leg, you would see it and you would understand and make allowances for us, even offer assistance. Well, guess what, a broken brain is worse. It doesn't heal or get better. We are stuck in a body that doesn't work right anymore, knowing that it is going to kill us, probably within a few short years.

Some days it makes us extremely angry and today is one of those days for me. I think it is justified to feel this way some times. I don't sit around and feel sorry for myself, but I do get angry!

Sunday, July 17, 2016

Negativity Unavoidable Lately

When I realized it was Sunday when I usually write in my blog, my first thought was "How in the world can I blog today, there is nothing good to write about." It sure seems like that this week. Sad because just last week I was blogging about keeping laughter in our lives.

Between the shooting of police officers and people shooting each other, it is almost too much to bear. How in the world can rabble rousers and protesters be encouraged by the shootings of police officers. If they are dead, they can not help any of us, no matter what color. Plus the biggie here... yes, there have been too many police errors lately that have killed men who should not have been. But, a few errors and bad judgments by a handful of policemen should not condemn all police. If some of those shooting each other happened to be nurses, should we condemn all nurses and start picking them off one by one? This is absolutely crazy thinking.

I am so frustrated by all of this I think because I lived through the Martin Luther King era. This man formed peaceful protests and marches. He got the point across that way more than any violence could have. Many people of all colors walked arm and arm and protested together. This peaceful movement brought many positive changes. If he had not been killed, or if someone had truly taken up his mantle, imagine how it could be today? Instead, we have two of his followers riling up the crowds to acts of violence. I just want to pull my hair out and yell at each and every one of them. We must come together in peace!

In all fairness, I will disclose that I know and love many police officers and worry about their safety always. I am also a firm supporter of 2nd amendment rights. Though I, unlike many others, do not feel that if we ban fully automatic weapons that it would destroy those rights. Banning them now, though, is too late. There are too many of them out there and like we accurately say "Take the people's guns and only the criminals will have guns." Okay, that rant is done.

Yes, I do realize that this is probably not the place to be ranting on this subject. I will though be tying it to FTD.

Staying calm and enjoying everything you can is one of the best things you can do for FTD. I remember when I was given my diagnosis. The doctor looked at my husband and me and said "Go, live you life and do all the things you have wished to do." Unfortunately, we have not followed that advice the way I would like. Most of the things on my things to do all involve travel and my husband is not comfortable traveling anywhere beyond our mailbox. Yes, it does frustrate me immensely. There are so many family members I would love to visit before my FTD reaches the point that I cannot. There are many places I would love to see. So many beaches where I would love to sit with a glass of wine, a good book and watch the waves roll in.

We do, though, keep as much laughter in our lives as we can. As I said last week, my husband has always been good with that. I don't want stressful television shows, with the exception of the news. I no longer read books with tense or sad story lines. I try to avoid negative people and people who want to dump their problems on me or make me responsible for those problems. Uh-uh, bye-bye! I have more than enough negativity trying to infiltrate my life as it is. Now though, it is nearly impossible to avoid the stressful situation is our country right now.

I don't remember laughing much the past couple weeks. I know and love many police officers, to them I say "Stay safe and I will be praying!" You know what, I think I would say the same thing to the protesters.

Sunday, July 10, 2016

Laughing While I Still Can

FTD is a horrible disease. It steals so much from you and from everyone who loves you. Most of all, it sometimes steals your happiness.

I try to not let the frustrations of my FTD ruin my attitude. Fortunately, one of the things it has not stolen from me is my sense of humor. Hmmm... unless it has convinced me that I am funny and I am not or that I am laughing at inappropriate things. Oops, yes the second part of that thought is accurate some days. You know that feeling you get at inappropriate times when something bad or sad somehow strikes you as funny. Fortunately, you know it isn't appropriate to joke about it and your sense of appropriateness stops you from saying what you are thinking or laughing. With FTD stealing that filter from me, I go ahead and say it or laugh. But, as usual, I digress.

I do still have a decent sense of humor and so does my husband. This leads to a lot of laughter around our house. The laughter lightens the load of all the crap FTD brings upon us. We even try to laugh at FTD. Of course, with my poor husband, he never knows when I will indeed think it i funny or if I will take offense and stomp out of the room. He doesn't give up though. His sense of humor has gotten us through a lot of rough times in our life.

A good example happened about 20 years ago. My father took his own life, shot himself. It was a really tough time for all of us. His neighbor whom I had called to go check on my dad, suggested that I contact the NRA. His thought was that since Dad was a life member, there may be a small insurance policy. Turns out there is, but only if the accident is hunting related. My husband quipped, "Do you think you could convince them he thought he saw a deer run through his bedroom?"  Oh, totally inappropriate. Many of my family would have been appalled. Truthfully, now it doesn't sound all that humorous. Fortunately though, all who were there immediately started laughing and we continued for quite a while. It was just what we needed... comic relief! It was the first time we had laughed since it had happened and lightened our load so that we could get through the next week or so.

I tell this story, not to talk about this private issue, but to point out just how much we depend on humor in our lives.

The humor has been difficult to find lately. Between all the fighting between the politicians about the upcoming elections, the shooting of police officers and the bad economy that seems to keep hitting many of those we love, it is tough to find much amusement. I have really had to fight off the bad moods to keep myself from sinking into depression that seems to run rampant among those of us with FTD. Again this time, I am finding humor in a strange way.

The most recent new symptom I have developed thanks to FTD, is my left leg not seeming to get messages from my brain. My balance issues previously have been pretty much limited to my right leg, up until now. With the right one, the leg pretty much just doesn't move and stays in place on the floor. This throws my balance off and it causes me to fall. As long as I have my cane to lean on so that I can try to catch my balance, or nearby furniture to grab onto or those wonderful walkers they have in the front of a lot of stores. What? You haven't seen those? Oh, maybe you still call them shopping carts. To me, it's a great walker.

With my left leg, the leg gets the message from my brain to raise up so that I can move ahead but it stops right there. All of a sudden, I will come to a screeching halt with my leg up in the air. I have to consciously think "Hey, why is my leg up like that?" Once I do that, usually I can then get the signal from the brain to the foot to go down to the floor.

Since I have already taken so many precautions because of the right leg not cooperating, I have not yet fallen because of the left one. Because I just stand there with my leg up in the air for ten or fifteen seconds or more, it causes me to laugh. So far, it has always been with my cane in my hand, near something or someone to grab onto and it keeps making me laugh. I keep thinking of the Karate Kid's position in the movie where his one leg is up.

This symptom is probably thanks to the MND part of my diagnosis (bvFTD w/MND) or muscular neuron disease. It is, in effect, ALS, but I don't care to think of it that way because if I think about it that way, it is way too depressing. We have lost several friends to ALS and one of my high school friends, with whom I have recently reconnected, is now suffering from it. It is a truly frightening disease, even more so than FTD by itself. I admit to taking an ostrich view of it. If I don't think about it, it isn't there. Since there is no treatment or cure, in my mind it is a healthy way to look at it. I will worry about that tomorrow.

So I will continue to think of myself as the Karate Kid. I will continue to find humor and laughter in everything that I can. If I offend anyone by joking or laughing at the wrong time, if I pick up on it, I will apologize, explain the disease and keep on laughing.

Saturday, July 2, 2016

"Anticipatory Grief"

Reading the newspaper the other day, I stumbled across a notice for a seminar being held called "Anticipatory Grief." While I was familiar with the concept, I had never seen this name for the situation. It really jumped out at me because it truly sums it up in two words.

Anticipatory Grief is just what it sounds like. Often, when caring for someone with a lengthy terminal illness such as dementia, you end up going through the grieving process while they are still alive. Some, so much so, that when their loved one finally dies, that they feel only relief.

Dementia of all types is a disease that can bring on this early grieving process. We already know how much of a toll caring for a loved one with dementia takes on the caregiver. Add in the fact that they are also grieving for the loss of who that person used to be and you have a tough and sad situation. It is so much that you are grieving that they have dementia or that they are slowly dying. A lot of it is grieving for what the loved one was and what you believe they could have been.

I have experienced this more than once. The first was when my grandmother was slowing dying due to dementia. I was very close to Grandma and my Grandpap. During my junior and senior high school years, I would spend the bulk of the summer at their home in rural northeastern Pennsylvania. I loved the calmness of the environment and the love that surrounded me. At home, my parents were working their way to a divorce and it was always a stressful place to be.  Grandma's was only a 3-hour drive away, but it seemed like an entirely different world. She could be a blast! She had a lot of joint pain, but would break out and dance the Charleston for me. She got me hooked on baseball while we sat out on the sunporch and listened to the Pirate games. I learned to drive their little tractor early on, then later Grandpap let me practice driving his car. Grandma never did drive.

Watching this woman's joy of living and her love for me and the rest of the family was a horrid experience. I spent a lot of the time in denial. I was not her primary caregiver, my mom was, but I visited often enough to watch her deteriorate in front of my eyes. Yes, there were fun moments, like the time my aunt had sent her chocolates and she hid them in her bra to prevent anyone getting to them before she could eat them all. Poor mom was cleaning her chest for a week. It was those chocolates covered with tiny candy balls on them and those balls hid in every wrinkle and fold for days! By the time Grandma actually died, I had already grieved enough that I did indeed only feel relief that she was no longer trapped in that body whose brain no longer functioned.

It was the same with my mother while she was slowly dying from dementia. One of the saddest days of my life was the day she finally forgot how to walk. I grieved for who she was and I was relieved when her body finally gave out. In between the deaths of Grandma and Mom, I dealt with my other grandmother dying, not of dementia, but with a variety of illnesses and multi-organ failure. Many extended family members thought there was something wrong with me, because at her funeral, I was not crying and looking sad. In fact, I was almost happy. They did not understand that I had already grieved for her and was happy that she was in a place with no suffering.

The only exception was when my favorite aunt, my mom's sister, also was suffering from dementia. This woman was my savior. She got me through a lot of my life issues, especially during my teenage years. At her house, I always knew I was loved. Yes, I was one of her caregivers through her dementia and watched her slip away from me and did go through the grieving process during that time. I sat for hours upon hours at her bedside after she was in the nursing home and hospital, but with her, after she died, I grieved all over again.

The seminar was being conducted at our local hospital by the hospital's chaplains. I would hope that it was going to address the guilt that many have after their loved one with finally dies, guilt that they are not grieving again. In many cases, the grieving does come back as you start remembering more and more about who they were and who they could have been. At least that was the way it happened for me.

I had no interest in attending their seminar. I already understood how it works and have done a lot of reading about the subject through the years. I have already discussed it with a couple different therapists. Now, with the loss of brain to mouth filters from FTD, when the pastors started offering their two cents worth, it is hard to tell what I might have told them!