War Veterans and FTD

I am sitting here writing this two days before Memorial Day is celebrated in the United States. More and more, too many people see this as just one more 3-day weekend for picnics, short trips or, here in the northeast, it is the day the swimming pools open.

Yes, it is all of those. None of these should take away from the reason we celebrate Memorial Day. It is the day our country has set aside to remember and honor all of those who have given the ultimate price of their lives in order to protect all Americans and our country.

What better time to talk about a subject that is getting quite a bit of attention and a lot of research. It is being investigated as to whether Traumatic Brain Injury (TBI) increases the risk of dementia with particular interest in FTD.

TBI has been getting a lot more attention since the Gulf and Afghanistan Wars due to the use of Improvised Explosive Devises (IED's). The incidence of TBI's among those serving in those wars is much higher than during any other war. With the recognition of those facts, more and more research is being done on the comparison of Veterans with Traumatic Brain Injuries to those without. 

The National Institute of Health has publicized a study of over 188,000 veterans. The number of those who had a TBI diagnosis were 60% more likely to develop dementia. Yes, that is 60% increase in risk!

Interesting to me is that research programs are continuing to see how many of these cases have led to FTD compared to other dementias, including Alzheimer's. In the same study of veterans that I just mentioned found that TBI's were more than 4 times more likely to be present in FTD than other forms of dementia. If this is true, if 100 veterans were diagnosed with dementia brought on by traumatic brain injuries, 80 of them would be FTD and only 20 to be spread among all the other dementias.

There are additional continuing studies on these findings. After discovering this in veterans, the researchers are considering whether this is true of anyone who experiences traumatic brain injuries. These could be from playing sports, accidents or any hits to the head. This is the reason so much more attention is being paid to the importance of preventing TBI's and concussions in sports. 

I can only speak for myself, but when I was younger I had confirmed diagnoses of two concussions. I also had head injuries at least once a year, usually to the front of my head. My family would joke that we finally knew it was Summer when Cindy had a huge (and very painful) lump on her forehead (usually from falls down to the concrete). I also know, from speaking to others with FTD, many had suffered concussions and/or head injuries in years past.

I am not implying that head and/or brain injuries are the only or even the largest cause of FTD. For instance, I also have a family history of FTD and dementia. My only thought is that these head injuries may have made me the likely one in the family to develop FTD instead of others. 

It may be years before we know if these studies pan out to anything but, to me, it is reassuring that such studies are being done. One more reason I support the AFTD.

I must end with a huge and sincere expression of appreciation to all who died to defend our country, to the families who went on without them and also to all those whom have been dealing with injuries ever since their service. Yes, I do know Memorial Day is only for those who died, but when I visit the VFW post and see the artificial legs or scars from head injuries, how can I not include them? Their lives have been changed forever as well.

It is okay, though, to still enjoy the day off as well!  Just avoid those crowds, noises and commotion of the celebrations. I know I will be staying here at home the entire weekend. Oh, wait! I do that every weekend... Okay, I'll grill some burgers, after I put out the flag.

Talk About FTD... Please!

Last evening, while wasting time on my computer, I reconnected with an old friend. (Isn't that the best part of Facebook?) Let me rephrase that... I reconnected with a friend I haven't talked to in quite a while. He and I both may be retired, but I refuse to believe we are old. Except for the fact that he mentioned he saw patients for over 38 years before he did retire.  Then I realized that it has been about 45 years since we last sat down and talked. 

He mentioned the 38 years as part of a statement that he had been seeing patients that long and, yet, had never heard of FTD. He has never been one to stop learning, so this is sad proof that the word about FTD is just not getting out there.

I always come home from the AFTD's annual Education Conference with my spirits lifted. I hear about the advancements in research and am confident that everyone there is doing their part in spreading the word and trying to find a cure. 

While that is true, they cannot do it all. The 60 Minutes story that was broadcast two weeks ago goes a long way as well, but with only 14 minutes of content, it didn't go far enough. The hopeful part is that, now that people have heard that FTD exists, it will be talked about even more. Some day, I hope, it will be recognized as its own disease and (meaning no disrespect to step children and step parents since I am a stepchild) no longer be the red-headed step child. Sorry, but I do love my cliches.

I am so very tired of hearing FTD not being referred to by that name but instead being labels as "Other Dementias."  Alzheimers Disease and "Other Dementias" or even worse, Alzheimers Disease and Related Disorders. Even more irritating is, since those are long titles, it keeps getting shortened to just Alzheimer's Disease. 

Last year, while serving on Pennsylvania's Governor's Task Force on Alzheimer's Disease and Related Disorders, the name kept being abbreviated as ADRD. To make it worse, they kept saying "Alzheimer's" alone when speaking. I know they got tired of me reminding them that there is more to it than just the "AD".  At least include "related diseases" or something similar to recognize we were working on a plan to address ALL dementias. I knew they were tired of me saying it because I saw many eye rolls. I thought if I said it enough, some of them might actually "get it" and acknowledge the ever elusive "related disorders."  If not that, then at least start saying it just to shut me up.

The responsibility for educating the general public is not only the job of the AFTD or government agencies. I believe it is the job of every one of us who knows FTD. My friend watched all three reports related to the 60 Minutes story, the 60 Minutes Overtime as well as the follow up story aired on CBS This Morning. He also watched my presentation during the Lifelines closing portion of this year's conference. I know my friend well enough to know that he will talk about it to others. Then, hopefully, they will then talk about it to others who will talk to others who....

My daughter and my sister (and probably a lot more who have heard it from me) talk about it every chance they get. You already know that I do that as well... probably to such an extreme that people get tired of hearing about it.  I talk about it at my chiropractor's office, my doctors' waiting rooms, really anywhere that I have a captive audience. I also never go to see a new doctor without an NIH brochure on FTD in my hands to leave with them. On a recent return visit to a new (to me) physician, a member of his staff told me that she had seen him reading it at his desk and she was pretty sure he kept it. 

I had finally broken down and gone to a podiatrist prior to attending the AFTD Conference so that I would be able to walk without grimacing in pain. (It worked by the way!) He looked at my chart and asked me about my FTD. I thought I was going to get the standard question of "What is FTD? I've never heard of it." Instead, he told me he had a friend who also had FTD. We spent the entire appointment talking about it. Yes, he did take time to diagnose what was wrong with my feet and gave me some good old school treatments. I did walk pain free at the conference. Just what I love in a doctor... well informed, intelligent and tries conservative treatments first!

One good news/bad news aspect of FTD, at least for me, is the lack of inhibitions. I will, and do, talk to anyone. I can do public speaking without any nervousness. Though I do still obsess about it. It's kind of a bad combination when you get FTD while you have had OCD your entire life. I actually printed three copies of my presentation and packed one in each bag while traveling. That way if a bag got lost or stolen, I would still have one. It's a wonder I didn't sew one into my pocket. Hmmm.... good idea for next time?

In the meantime, the AFTD was live streaming most of the conference. It is now available online. Simply go to theaftd.org and it is under "News and Events".  Or, here is the link:  https://www.theaftd.org/2019-aftd-education-conference-materials/   I think it is wonderful that they have done this. Now all those who were unable to attend the conference can get all the same information the conference attendees received.  

I will end this by asking, no, begging you to spread the word. Look those people who believe that, since they never heard of FTD, there is nothing wrong with you right in the eye and say "Let me tell you about it!"  I often go as far as saying "You never heard of it? I hope you never get it because it kills you." Sometimes I get angry enough to get even more "in your face" about it but I won't suggest for you to say what I do at that point.

I don't really care what you say, just please talk about FTD!

Travelling with FTD

Time has been flying by!  I apologize that I have not posted anything new for 2 1/2 weeks. The first week, I was getting ready to go to the AFTD Educational Conference, the next week WAS the conference and then it has taken me a week and a half to recover from the trip.

Speaking of the conference, it was fantastic!  They had a new format and things seemed to flow much more smoothly. The presenters did not talk over my head like they often do. I actually skipped the research presentation because this subject is usually so far over my ability to comprehend that I would become quite stressed. So this year, I went to the quiet room. I was supposed to staff the quiet room for a while anyway, so I thought this would work out well. Then I find out I missed an excellent presentation.

That should work out okay in the long run. Because the AFTD live-streamed much of the conference, it will soon be available online. I am looking forward to seeing the part I missed. I will admit that I am also looking forward to seeing my presentation, out of curiosity. Every one kept telling me how good it was, yet I thought I messed it up in a couple places. Oh well, I guess I proved I have FTD.

I really, really, really had a good time at the conference and want to congratulate the AFTD on its success.  It is obvious that the entire staff put a lot of work into it. It was not all sunshine and roses for me though, unfortunately.

I kept becoming stressed as I would realize I had lost things. First is was all of my cash, then my new noise canceling headphones, followed by my cellphone. They all were nearly followed by me losing my sanity!  While packing, I carefully divided my cash into three piles and hid each in a different bag. I was so clever, at least I thought so. Reminder to self:  "Next time, tell someone where you are hiding it!"  That's right, I couldn't remember. Once I remembered one, I relaxed and quickly found the next. The third I did not find until the next morning. That morning I also found my headphones after my daughter suggested I ask at the front desk. Someone had turned them in! The cellphone was easy, we called it and "Whew! I had actually left it turned on."

Let me get back to the present.  I am still exhausted, yet I have been home for 10 days now. When I am at the conference or any other event I love. (though I can't think of any), I run on adrenaline. I am so happy to see all my FTD friends, my friends from the AFTD and making new friends. I also love learning new information and sharing whatever I can contribute. 

All this comes with a price. Once I get home, I crash. I am left with no energy and no desire to do a danged thing. I sleep more hours than usual, take naps and don't do much at all. I understand and expect it now so I don't beat myself up over it.

In the support groups I often see questions from loved ones and caregivers about how their FTD'er doesn't seem to want to do anything but sleep and has interest in the usual things they enjoy or do. Some even regress in their abilities. After asking, I usually learn that there was a big event... a wedding, a graduation, a family reunion, visitors in the home or, yes, even the conference trip.

Just like I described in my recovery process from the conference, it is a common reaction to too much stimulation. Just about any activity or interaction with people can have this effect. Fortunately, in most cases, if we are left to rest both our bodies and our brains, we bounce back to how we were previously. 

This worsening of condition can occur after even a visit that only lasts a couple hours or simply a shopping trip. I say "simply" but there is no activity is simple to those of us with FTD. Anything outside our normal routine is a challenge and a drain on our energy and brain. I call it "Brain Strain." Please don't try to force them back into their regular routine, let them recover with the time they need.

I have done nothing since getting home from L.A. except one short visit to the grocery store. It isn't until today that I have any energy to do things. The first time I experienced this, I was frightened because I thought my FTD had taken a nose dive.  This reaction also causes the caregivers and loved ones to panic or not know what to do. My answer is always "Let them rest as much as they can and keep their routine as normal as humanly possible."

An expert in dementia, Dr. Oscar Lopez of the University of Pittsburgh, explained to me (after he gave me my diagnosis) that in almost all cases of FTD, if the progression is slow, it remains slow. Unfortunately the reverse is also true. If the progression is fast now, it will not slow down. Because of his belief, he repeated my SPECT scan exactly one year after the one he used to diagnose me. Fortunately, mine is fairly slow progressing.

Because he explained that to me, the first time I crashed after a big event, I had faith that I would recover from it and I did. I am not afraid to push myself to get to conference, firstly because I know once I get there I will run on adrenaline and, secondly, that once I get home I will bounce back eventually.

I will admit this time it has taken longer. I am sure part of the reason is that as my FTD does progress, it will be more difficult to recover. For this trip, though, I blame it on the fact that I had three flights and two lengthy layovers to get there and again on the way back. I scheduled these deliberately so that I could connect with my daughter and have her with me for the long leg of the trip to L.A.  I will also admit that I had a horrible meltdown in the Pittsburgh Airport. I was so fortunate that two other passengers stepped up, got me to sit down and get the situation taken care of. When deplaning, two other lovely women made a point of coming up to me and telling me that the check-in person was rude and did not handle the situation correctly. Without these four ladies' assistance, I am sure security would have been called and would have never made it to California. 

I hope that my telling you about my experience will help you stay calm when your loved one is having a meltdown during travel so that things do not get out of hand. Also, when others offer to help, allow them to. This is for FTD'ers and those caring for them. I doubt very much if I will ever book my travel to include changing planes and layovers. 

Also, remember TSAcares. They are fantastic. The TSA agent in Pittsburgh and L.A. both called my daughter ahead of time to assure me they would take care of me and they did. Wheelchairs were waiting at all the gates and they took me to the next one. The wheelchair attendants even offered to stop at the bathroom. When arriving at the airports, TSA took me to the front of the line and assisted me going through the screening. 

When my daughter and I arrived at the L.A. airport to return home, on an early flight, the TSA line was probably about 200 people long. It was early so there was only one line open. I nearly panicked when I saw it and kept repeating "I can't do this, I can't do this." They made sure that I could.  The phone number is 1-800-TSAcares. Web address is www.TSAcares.gov. Call about a week ahead of time for best service, or you can call up to 24 hours before your flight.

I am not sure my writing is the best right now, but I hope you got two things out of this:  The AFTD Conference is well worth the stress and inconveniece of travel... and, please allow anyone with FTD to recover from any stressful event at their own pace. Also, the event may not be stressful for someone who does not have FTD, yet will be very stressful for the FTD'er.

Hopefully, I will see you all at next year's conference. It will be in Baltimore in mid-April. Info should come out around the first of 2020.