This blog is going to be a bit touchy. I try to be as sensitive as possible in my blogs, but sometimes I just need to tell it like it is.
There is not enough research being done on FTD, no doubt about it. The main reason is that there isn't much money being earmarked for it. It is believed that there are so many more cases of Alzheimer's Disease that it is better to focus on that one. Grrrr... enough said on that one. There is not enough research being done, but there is research being done.
In fact, the FTD Registry is currently seeking for those registered to complete some new surveys. I completed mine yesterday and was impressed by the thoroughness of them. You can contact the FTD Registry at www.ftdregistry.org. If you are registered with them, you can take the surveys. If you are not registered, please consider doing so and then completing the surveys. The more they are able learn from us, the better research that may be enabled. Obviously, I encourage everyone with FTD (or a caregiver if the one with FTD cannot complete the surveys) to respond.
That is the easy part of this blog. The difficult and more sensitive part is the number of questions I am seeing out on the internet (primarily from caregivers or others who have loved ones with FTD) searching for commonalities that they think may have contributed to causing FTD. There is nothing wrong with curiosity and it is pretty much human nature to want answers.
However, the biggest danger I see in these questions is that many of them seem to be searching for something that those with FTD have done to cause their disease. Approximately one-third of all FTD cases are suspected to be family related and caused by a faulty gene. For the remaining non-genetic cases, I will quote the Alzheimer's Association, "There are no known risk factors for any frontotemporal degenerations except for a family history or a similar disorder." The Alzheimer's Association is not alone in this belief. Searching on the internet, I found similar statements from almost every medical research center.
So, why do I think these questions are a danger? Since the questions often seem to be suspecting that the person with FTD did something to bring on their FTD, I fear that the person asking the questions may not be the best at caring for someone with FTD. I readily admit that FTD has brought me a healthy dose of paranoia but I cannot help but wonder that if these people are able to believe that the person with FTD brought it on themselves, there would be more resentment and less compassion. In other words, "Well, if she brought this on by using illegal drugs, or consuming alcohol, or smoking cigarettes, I don't feel obligated to take care of her or feel sorry for her!"
Going hand in hand with the compassion concern, is the concern that people with FTD read these questions and end up feeling like they perhaps did do something wrong and brought it on themselves. I would think that they would also feel as though they, and their disease, are not being understood or are being dismissed.
On the other hand, it would extremely wrong to suspect everyone asking questions is trying to place blame. There is a reasonable desire to find a reason for things. In the case of FTD, it could be the fear of them also developing this horrid disease that drives it or just an intense need to learn as much as possible about it. When I see questions more oriented to head injury, abuse, neglect, depression... things that are out of the control of the person who has developed the disease... that is my first reaction.
Okay, I've already risked offending a pretty large group of people, but there is another area that concerns me. I often see, out there on the internet, suggested home and holistic treatments. There is no research to back up most of these claims and some of them can actually do harm. Many may have a placebo effect and provide the illusion that they are doing something to improve or delay the disease. Now, don't get me wrong, there are many holistic and home treatments that may help alleviate symptoms but they aren't a cure.
The medical field has not determined if there are supplements that can actually help FTD, but there are supplements that are believed to improve memory and/or thinking. There is little risk in taking these. These include CoQ10, Vitamin B and Vitamin E. Personally, I have been taking B and E supplements for over 15 years due to deficiencies in my body. I have pernicious anemia so my body cannot absorb vitamin B in the normal way and I must get injections. However, I would never suggest that perhaps these vitamin deficiencies caused me to develop FTD. That would be grasping at straws and offering false hope. There in lies my concern about claims like that being posted on the internet, as well as wasting money that can become scarce when one has FTD.
One of the herbal remedies showing promise with some of us is CBD oil, but I will not suggest that everyone can benefit from it. It is also very expensive which makes it out of reach for many anyway. If you are interested, there is a lot of information about it on the internet and I will leave it up to you to read about it and evaluate the risks/rewards for yourself.
There are lifestyle issues that are suggested to possibly delay the progression of FTD. The two main ones that come to my mind are exercise and a healthy diet. When I was diagnosed, the neuro-psychiatrist gave me two suggestions. "Get exercise equivalent to walking two blocks a day for me, and get your affairs in order." I guess it was really three because he later said "Enjoy your life while you still can."
I am not sure walking two blocks a day is perfect or enough for everyone, but it is good to keep moving if you can. If you can jog, jog. If you can walk, walk. If you can't do either of those, try chair Yoga. The senior centers in my area offer chair exercise sessions also. The more you stay active, surely, must be better for you than remaining sedentary.
Obviously, a healthy diet is good for absolutely everyone. A Mediterranean diet is highly recommended by experts. It includes less meat, less carbohydrates, more vegetables and healthy grains.
Yes, it is obviously better to eat a healthy diet but it can also be a huge challenge. When someone with FTD has the common intense cravings for carbs and sweets, it can get downright difficult to manage. Also, the sense of taste and smell are often greatly reduced. I compensate for that by using more spices and even adding a little sweetness to foods. I use agave syrup for sweetness because, while it does have calories, it does not affect the blood glucose level like sugar. The sugar just makes the cravings for sweetness stronger.
Here, I would be remiss to not mention the question of which is most important, length of life or quality of life. Personally, I succeed pretty well at eating healthy, but I also eat my cookies. I try to have homemade ones on hand and usually add things like peanut butter, dried fruit, whole grains and, I admit it, sometimes chocolate. But when I am craving sweets, stay out of my way! I know FTD is going to kill me eventually, so why should I deprive myself of all tasty treats?
Bottom line on the "cures" and lifestyle changes, I suggest you use your common sense. If it sounds too good to be true, it probably is. Bottom line on the search for reasons someone has FTD, think about whether it really matters. Will suggesting that someone caused their own FTD make a difference or make things worse.
My own personal bottom line, please visit the website www.ftdregistry.org. Answering these surveys to help the experts research the causes of FTD may be a much better option than to wear yourself out to figure it out on your own.
No comments:
Post a Comment