Sunday, October 25, 2015

More Random Thoughts

Some random thoughts:

I have become the queen of online shopping. I was never a big fan of shopping anyway, then you add in the FTD, forget it! Shopping is so stressful, from the crowds to my difficulty of handling financial transactions. If I must shop, I limit myself to the same handful of stores so that I am in somewhat familiar surroundings. I have not been inside a mall in several years. I only shop on weekdays during school and work hours when the stores are a bit less crowded. Even with these guidelines, sometimes I find myself in a store, panicking and begging the person I am with to get me out of there.

There are quite a few symptoms of FTD that are rarely talked about, because they are downright embarrassing.  One is the loss of sexual inhibitions and sometimes even hyper-sexuality. Last week, during an outing, someone was talking and joking. My immediate response was of a sexual nature. The people listening started laughing while looking embarrassed. Several comments were made about what I said. I think it was just not something they expected from someone my age. I still don't think my comment was totally inappropriate (at least not this time) but I obviously made them uncomfortable which made me want to curl up and disappear.  The sad part is that I thought I had filtered it! This problem is due to the lack of impulse control and filters that those of us with FTD struggle with. Quite often, if we think it, we say it.

The hyper-sexuality issue can be extremely uncomfortable to all involved. I have spoken with quite a few with FTD who have had very frustrating problems with this. Imagine, the loved one with FTD is feeling more sexual than they ever have before, but the caregiver, after caring for all their loved one's needs all day, every day, has very little or no interest at all in a sexual relationship. I don't think I need to go in to any specifics, as I believe it is easy to imagine the difficulties this could create. Plus, I don't want to go beyond a PG rating!

Another big problem with FTD is bathroom accidents. I get so angry when I read posts on an online support group from caregivers insisting their loved one does it intentionally. What? Sure, we sit around and think "How can I make my caregiver's day worse?" Yes, no one likes to clean up accidents or to have to get up close and personal with those body parts to clean them. Guess what, caregivers? Can you please think how embarrassing it is for us?  Fortunately, I have not reached that point yet, but I realize that it will someday. I also imagine how humiliated I will be.

I have talked about this repeatedly but cannot repeat it often enough: FTD is not an obvious disease. We can still be intelligent and well-functioning. We are also very clever about covering up our problems. Don't try to make us "feel better" by telling us that we seem perfectly fine. We know that, we try very hard to not let this disease get the better of us or to let it show. This past week, I had another incident of someone telling me, "Oh, don't worry about it, even I constantly forget where my keys are!" Uh, huh!  Gee, thanks, it really is the same thing! Our problem is usually not memory loss, at least until the late stages of the disease. We are not hypochondriacs or imagining our disease. We have confirmed diagnosis from the appropriate brain scans. We have it and it is a real disease, even if you haven't heard of it! Obviously, I am blessed by still having the ability to read and write. I wish the doubters could come to my house and watch me try to follow a recipe, or watch me try to pay for a cup of coffee with cash, or watch me trying to find my way around even in familiar places. Yes, I don't seem to need that cane I walk with. It is not because I can't walk, it is because at any time, I can lose my balance and fall. At least with the cane, I stand a better chance of not falling and injuring myself.

I am so very thankful that there are so many people who have FTD who are willing to talk about it. I would not make it through very many days without help from my online support group. Not mine literally, but the one I visit every day. We laugh together, cry together, share helpful advice and pass on any new or hopeful research we stumble across. I am so thankful for those individuals who administer the site. This disease is one, I believe, that only others dealing with it can truly understand what we are going through. To those of you from the support group who read this, you know it is you I am talking about and I cannot thank you enough!!!

Enough rambling for one day. I hope I haven't repeated myself from past posts, at least not too much. Hopefully, my brain will be more organized next time!

Wednesday, October 21, 2015

A Few Musings About my Week

Maybe, just maybe, I am becoming a successful advocate for FTD. After my letter to the editor appeared in the paper two weeks ago, I have received three phone calls looking for more information. I spent about an hour each time explaining FTD and giving them sources to contact for  more information and sources who could recommend physicians who truly understand FTD.

Today, while in the waiting room to receive my annual mammogram. (Note to self: Do not schedule mammogram during Breast Cancer Awareness Month.. it's the busiest month in the mammo department.) While sitting there, I got into a conversation with a woman whose husband has dementia, diagnosed as Alzheimer's and sounded like it to me. But then, another woman started asking me questions because she has a family member who has been told they can't have dementia because she is too young.  She is 40!  It could be FTD, it could be early onset Alzheimer's. What is wrong with these doctors? I know we live is a smaller town, but it is getting ridiculous. It makes me happy to be able to help others understand this dastardly disease.

When I was in the exam room talking to the doctor after the mammo, I apologized for getting confused and told her I have FTD. She asked lots of questions about it and said she was definitely going to read  up on it. Wow!  A doctor who cares. She really did seem interested.  Shouldn't all doctors be like that? It definitely would help.

My husband and I visited my daughter for a few days this past weekend.  It was awesome!!! We hadn't seen her in many months and I'm sure you can imagine how much I miss her. I know I have blogged about it before. We stayed in the same hotel we have for the past three years or so, and my husband called ahead to reserve the same room we have had the past few times. That helped so much. I did not feel disoriented, even in the middle of the night.

Our daughter and her roommate took me to the Renaissance Fair and I lasted the entire day, 10 a.m. to 5 p.m. They had come up with the idea of renting a wheel chair. God bless that daughter of mine! If you have never been to a Renaissance Fair, they are not on paved surfaces but dirt with rocks and tree roots, but she kept insisting on pushing me. The chair also provided me a comfortable seat for the shows, instead of the wooden benches. Finally, after the final show of the day (and what a show it was!), I decided to walk behind the chair and use is sort of like a walker. This works well with grocery carts at the grocery store, so I thought it might work and it did. That section of the fairgrounds would probably have been too difficult to push me through anyway... lots of rocks, pretty big ones, and tree roots. I think she would have hit one, bringing the chair to a halt and me flying out of it!

Our day at the Fair is one of the best days I have had in at least a couple years.  I had been to a few Highland Games, but never to a Renaissance Fair, and days with my daughter are worth more than a bucket of gold anyway!

All was not golden though, the driving trip down and back (9.5 hours down and only 8.5 hours back due to less traffic) were very stressful to me. At one point I wanted to open the car door and get out. Problem was, we were driving 65 mph at the time! Good thing my lack of impulse control isn't quite that bad. Books on tape (actually CD's) help me during long rides like that. If you are doing a lengthy ride with someone with FTD, I suggest trying them. You can buy them, download them or even rent them at all Cracker Barrel restaurants for a very reasonable price and can return them to any Cracker Barrel, doesn't need to be where you rented it.

We had purposely scheduled a couple down days for when we got home, something I would definitely recommend, if at all possible, following a trip. After three days, I am feeling settled again and ready to schedule the next trip to visit her!

Sunday, October 11, 2015

Spouting Off to the World Again

Back in August, I blogged about a letter to the editor that was published in our local paper.  Well, I did it again!  A couple weeks ago, they ran a front page store about Alzheimer's and "other dementias." Well, except for using the words "other dementias" a few more times, it was all lumped under the Alzheimer's umbrella.  No "other dementias" were talked about at all.  If you are a regular reader of this blog, you know that I became infuriated.

This week, which happened to be World FTD Awareness week, it was quite apropos that they (the Altoona Mirror, located in Altoona which is in central Pennsylvania) printed my letter.

I have inserted a copy of the letter because the link from the Altoona Mirror's website is not working correctly. Looks like you can read it pretty well this way anyway.  I will mention here that I did not write the cutline (headline) someone at the Altoona Mirror did. It would have been nice if that person had read the letter. I was not saying that they differ. They are both types of dementia. I was trying to get across that there are more types of dementia, other that Alzheimer's, that need to be talked about, publicized and researched.

It is at times like this that I am so very thankful that I am still blessed with the ability to read and write. The reading ability is slipping some, but the writing is still with me. So VERY thankful!

I also posted the letter on my Facebook page, along with daily informational snippets each day of World FTD Awareness Week. I have received a lot of feedback on the letter and the snippets.

The day the letter appeared in the  paper, I received a phone call from someone living in this area who located me after reading the letter in the paper. We spent about an hour on the phone. I suspect she may have FTD, rather than the depression she keeps getting diagnosed. I was able to steer her to www.theaftd.org, which is the website for the Association for FTD, sure that they would be able to give her some advice and steer her toward a medical practitioner who is familiar with FTD.

Anytime I write things like this, it is with the hope that it reaches and educates even just one person about FTD.  SUCCESS!!!




Sunday, October 4, 2015

Keeping It Positive

I don't know if I have ever mentioned how much I dislike talking on the phone.... and making phone calls?  Forget it.  There are, however, a handful of people that I would always take their phone calls and be thrilled that they called.  Interesting enough, these are the same small group of people that I enjoy calling You can count them on one hand.

Late one evening this past week, the phone rang and I looked at the caller ID and it was one of these people. It was late enough that I was not very thrilled to have to talk because the later in the day, the more difficulty I have in getting my words out. Fortunately, for this handful of people, I would never ignore their calls... night or day, anytime.

The one who called me was not crying, but I could tell that she was on the verge. She is currently battling a very persistent cancer. We thought she  had beat it last year, but up it jumped again, saying "Nah, Nah, Nah, Nah," and sticking out its tongue. Well, that is how I picture it anyway. She knows I had my own battle with cancer a few years ago and that I understand the toll chemo and radiation take on your body and your psyche. She also understand what I am going through with the FTD battle. I am honored that she chose me to call.

Her question to me was, quite simply, "How do you do it? How do you keep a positive attitude?" I paused for a bit and than answered "Some days you don't." Isn't that the truth? Some days it just seems not worth the effort and everything looks dismal. But... I continued, "Other days you find something positive. Sometimes it jumps out at you, like a beautiful bird at your window or someone being extra nice to you or paying you a compliment." I took it even further and said, "Sometimes you have to really search for something good... read a silly book, watch a silly tv show. Ask someone for a hug. And finally, call me, day or night, I will always be here to give you a laugh or at least a big smile and tell you how much I love you."  Yes, I do believe you can hear a smile over the phone.

When I was training people in whatever office I was working in at the time, I always told them to take a second and smile before you answer the phone. It makes a big difference: in your attitude, in the reaction of the one calling and sometimes makes a big difference in the results of the call. Try it sometime.

By time we finished the call, and it wasn't even as long as our usual talk-fests, she sounded so much better. I think that part of why it helped her was that I didn't offer platitudes and say things like "It will be okay, you will beat this" and didn't try to compare it to my experience.  No two cases are the same and everyone's body reacts just a big differently. I will say that she was amazing going through the battle the first time, and is staying as strong as possible this time.

I strongly believe that keeping a positive attitude, or at least trying to, not only helps you with the treatment, but also with the results. It fills you with positive energy instead of negative energy. I don't always succeed, I can have a few down days here or there, especially when crappy things are happening in my life, not necessarily related to FTD.

That is one of the reasons that, even though I know FTD is a terminal disease, I keep fighting. Not only to keep my own spirits up, but to keep attempting to inform as many people as possible about FTD. I write this blog, not only because it helps me to get my feelings out, but if it reaches just one person and gives them enough knowledge that they say "Hey, maybe that's what is wrong with me (or their loved one)."  I also, every time I see a doctor I talk about it. Not only my family doctor or neuropsychiatrist or my therapist, but also my dentist, my eye specialists the ER doctor, any captive audience. I offer to bring them information and some of them actually take me up on it and I can tell at my next visit that they actually read it. Again, if this leads to just one correct diagnosis for someone, it is more than worth the effort.

It is much easier to fight the battle with FTD if you have a correct diagnosis and become informed about the disease. It is toughest on those who are told "It's just depression" or "You are too young for Alzheimer's" and on and on. Trying to function when you are screaming inside, and sometimes out loud, "IT IS NOT DEPRESSION! I may be depressed, but it's from fighting the problem, not the cause of it," can totally exhaust you and make it very difficult to keep any kind of positive attitude.

That late evening phone call, when she couldn't deal with things, was a gift to me. To think that she loves me enough to share her inner feelings and trust me enough to try to help her through it? Now that made for a more positive day for both of us!