Lately, I have seen a large number of questions about the "stages" of FTD. This is a difficult question to answer since every case of FTD is so different from the next, but I was determined to address it. I pulled my file on the subject and searched for more in-depth info online so that I could pull it all together. There, I found a couple articles that explained it a much better than I could. So, instead of writing it, I am giving you two links to sites that I found that were interesting and explained it well:
https://www.dementiaaide.com/blogs/tips-for-dementia/fronto-temporal-dementia-guide#stages
http://ftdcaregiving.org/documents/ProgressionFTD_CaregivingPerspective.pdf
Since I don't need to write more about that subject, I am left with some rambling thoughts.
⧫ I often talk about the AFTD (Association for Frontotemporal Degeneration)(website: www.theaftd.org or helpline at 866-507-7222). Their website was totally redesigned a few months ago so if you have not visited it lately, I suggest that you do. There is a ton of information available on there. You still have to go through many layers in order to see it all, but it is much easier to find your way through now.
The AFTD provides a lot of services for those of us with FTD. They have grants that assist not only those of us with FTD, but also the caregivers. They are also one of the best sources for information about FTD. I had the opportunity to contact them this past week when I realized that someone with FTD, whom I have come to consider a great friend, could probably best be helped by them. This person had already contacted a couple other organizations but was not able to receive help. I suggested calling the AFTD but then realized that with her communication difficulties, that it might be difficult for her to do. I sent an email to Matt Sharp who is their Program Manager and explained a little about her situation. The next morning, I contacted my friend and suggested she call Matt. Guess what! He had already called her and was in the process of helping her.
The people at the AFTD all seem to me to be extremely dedicated to our cause of FTD and have always been willing to go out of their way when I have needed something. They are also the organization that hosts the annual FTD Education Conference. The conference will be held next May in Los Angeles so keep an eye out for more information on that. I encourage everyone to attend if you are able.
⧫ On a similar note, if you have been diagnosed with FTD (or are a caregiver) there are quite a few support groups out there on the internet. The AFTD sponsors one that is for both. There is also an excellent support group that is for only those with FTD. It is a "secret" group, meaning that it is private, by invitation only and not accessible to anyone except those of us diagnosed. This also means you cannot search for it and find it which keeps it extremely private. If you have a confirmed diagnosis and are interested, you can email the primary administrator of the group at Sherylwhitman.FTD@gmail.com . There is another group called "Ask the FTD Patient" where you can ask questions and receive answers from FTD'ers based on their own experiences. Often times, they are the only ones who can answer a question. You can use Sheryl's email link to join that one as well. If you want more information but aren't sure you are ready to join, feel free to ask questions in the comments section below. You can always do that with any of my blogs.
⧫ A while back, I mentioned in a blog that I am experimenting with CBD oil. CBD oil is made from hemp and shares many of the attributes of medical marijuana. It is legal in most states. It contains nothing that can cause a marijuana "high" so it is supposed to be safe to use. I promised to report back on how it worked for me. I do not use it every day and I'll get into that in a bit. However, when I have one of those dreadful "FTD headaches" or when I am feeling more stressed than usual. I have been placing half a dropper full under my tongue or inside my cheek (0.5 ml). It does calm me enough to reduce my stress level. For the headaches, I would say that it takes "the edge" off. The headache is still there, but it eases it enough so that I can function without hiding in a dark quiet room.
I must point out that a full recommended dose is 1 ml. I imagine that if I used that full dose, the result would be even better. Unfortunately, I experience some stomach pain when I use the oil. I also have the same issue with marijuana (Though it is illegal in my state so of course I have never tried it, just in case any law enforcement are reading!!!) My doctor suggests that I may have an allergy to it just as I do with most things, including a lot of plants. I gladly trade some stomach pains for some headache and stress relief though. I know of many other people who get even better results from it than I do. If you have access to medical marijuana or the real stuff, I understand that works much better.
I actually have an FTD headache today, so you can see that it does make it subside enough that I am still able to be writing this. Then again, it may be the headache that is making me ramble.
If anyone reading this uses it for any other purposes, I would be most interested in hearing about it.
⧫ Another product I have been having good luck with is Lidocaine cream. I get the prescription strength of 2.5% and, of course, must have it prescribed by my doctor. I don't know how many others, if anyone, has this same experience, but my brain seems to get confused between pain, itching and just plain irritation. If I cut myself or burn myself, it can drive me to distraction by severe itching instead of pain. A bug bite that should itch may be felt as pain. Also, many times, areas of skin can just get irritated by many strange things. It can be from a clothing tag rubbing on it or rubbing on most anything, like the arm of the sofa. It can even be triggered by someone's touch on rare occassions. (Now that is just plain weird, I know.) I have found that if I apply the Lidocaine cream (works better than the gel) and cover it with a band-aid or even wrap plastic wrap to keep it from rubbing off, it dulls the feelings of pain or itch just as it is supposed to. I sometimes need to apply it two or three times. By dulling the feeling, my brain seems to be able to reset itself and will, most often, eliminate the feeling totally or at least making pain feel like pain and itch feel like itch. Please don't try it on severe cuts, burns or open wounds.
As I said, these are just some little issues that I keep meaning to write about but are just not a big enough issue for an entire blog. I promise to get back to a real blog next week, as long as I don't have another FTD headache!
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