This week has been FTD World Awareness Week. I'm sure a lot of my Facebook friends got tired of me posting about it every day. For those of you who did not see yesterday's post, it read:
"Still World FTD Awareness Week: No catchy picture today, just me: Dementia and Alzheimer's is not the same thing. Dementia is not a disease. It is a symptom of many different diseases. Yes, Alzheimer's makes up about 80% of all dementia cases of those over the age of 60. FTD makes up most of the other 20%. However, FTD is the cause of 90% of all cases of dementia under the age of 60. Scary numbers, yet it is not as well known. It does not get recognition nor money for research. There are medications to slow down the progress of Alzheimer's Disease, not a cure, but slows it down. For FTD, there is nothing. It is a life-ending disease, no question about it. There are no medications to slow it down. There is no known treatment. There is no cure." (I must correct myself on this. The Alzheimer's medications slow down or improve the symptoms of the disease, but it does not slow down the disease itself.)
Every time I read about or write about these statistics, I get angry, really angry. Someone reminded me today that FTD was discovered years before Alzheimer's Disease, yet it is still overlooked and misdiagnosed. A fact that I find interesting is that it was explained to me by a local cardiologist. He practices in this same city where the neurologists, from my experience with them, seem to know not much at all about FTD, if anything. Seems like it should be the other way around or that, perhaps, the different specialist should communicate more with each other.
Online this week, I did come across the results of one interesting study that was done at the University of Pennsylvania involving FTD. They were studying to see if it could be diagnosed from a special scan of the retina. The results are showing that it does seem to work for FTD and other diseases that involve dementia. The results show that with FTD, there is significant thinning on the outside of the retina. years before diagnosis by conventional means. I found it fascinating so I thank whichever of my friends posted it for us all to see.
This study really jumped out at me because I started having serious retinal issues about six years or so before I began noticing any symptoms of FTD. I discussed the study with my retinal specialist during a checkup appointment this week. He had not yet heard of the study and seemed interested . He was doubtful, though, that it would have worked in my case since the entirety of my retinas are extremely thin for other reasons. It will be interesting to continue following this study and any results that develop from it. It is exciting to see positive results of any FTD research.
On another personal note, I continue to experience constant headaches on the left side and the left front section of my head. I have explained before how these headaches are worse than the worst migraine headache I have every experienced. In addition to these headaches and my increased difficulty with swallowing, I am feeling extreme paranoia. I already know that FTD is out to get me, no doubt about that. However, now, I am feeling as though everyone is deliberately doing bad things or saying bad things about me. I have no clue as to whether the headache and paranoia have anything to do with each other, but they both are definitely having an effect on my quality of life.
The headaches are having another effect as well. Trying to think through the pain is difficult. The pain is affecting my ability to concentrate and focus. For instance, if I have the television or music on and someone begins to talk to me, they have finished what they are saying before it registers in my brain that they were talking. This gets a little old and frustrating for everyone around me, I am sure. It is a magnification of the "one thing at a time" concept I mention so often.
With World FTD Awareness Week coming to a close, I will now be focusing on preparing for a table display that I am doing in a couple weeks at a local event. This event is for non-professional caregivers and is "Caring for the Caregivers." What a great idea! Instead of speakers as they usually have at the caregiver conferences, they are having massage therapists, music, Reiki, yoga and much more. Sounds like just what the caregivers need. They don't get enough credit for all they do nor do they get a respite from their task.
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