This blog is written using my experiences of living with my own bvFTD and of being a caregiver for three family members who had FTD and my husband who died of Alzheimer’s Disease. I have no medical degree. I research subjects and attempt to be totally accurate. However, I do have bvFTD and can make unintentional errors. I do not suggest you make health decisions based on this blog without first discussing it with your, or your loved one’s, doctor.
It was only a few years ago that there was a discovery that FTD could be diagnosed earlier by evaluating the retina of the eyes. It was discovered that, even early in the progress of the disease, there was remarkable thinning in the retina on the back of the eyes.
We know that frontal and temporal lobes shrink during the process of FTD. We know that the retina is connected to the brain via the optic nerve. The retina is considered part of our central nervous system. I had major retinal issues in my eyes for over a decade before I was diagnosed with FTD which allowed this study to make sense to me.
I was diagnosed with macular degeneration in (I am estimating here) 2002. Macular Degeneration is caused by the thinning of the retina. The retina is in the back
We know that frontal and temporal lobes shrink during the process of FTD. We know that the retina is connected to the brain via the optic nerve. The retina is considered part of our central nervous system. I had major retinal issues in my eyes for over a decade before I was diagnosed with FTD which allowed this study to make sense to me.
I was diagnosed with macular degeneration in (I am estimating here) 2002. Macular Degeneration is caused by the thinning of the retina. The retina is in the back
of the eyes and can easily be viewed through a dilated eye. Three specialists who all concentrated on retinal issues could not find an explanation of why which is common with this eye disease.
Some of the symptoms of macular degeneration are visual distortions. One example of this is straight lines seeming bent. It also often causes reduced central vision in one or both eyes, the need for brighter lights and increased difficulty to adjust to lower lighting such as in restaurants. Words may become blurry, especially on the printed page. Now for a couple that I did not know, but have been experiencing for years, worsening as my FTD progresses. It can cause decreased intensity or brightness of colors, loss of depth perception and objects may vary in size between the two eyes.
One that surprised me as I researched this today is difficulty in recognizing faces! I experience, and have heard of others with FTD experiencing, increasing difficulty in recognizing faces. For instance, all men with dark hair look like the same person, all women with long blond hair look alike. This is accentuated even further on television. The second that surprised me is difficulty in recognizing objects we are searching for. For me, the most embarrassing is when I am needing the remote control and become out of control from frustration only to have someone point to it and I had been looking right at it.
I am not alone in experiencing these gaps between vision and recognizing objects. Many of my friends with FTD talk about experiencing the same thing.
I am not suggesting that everyone with FTD has Macular Degeneration nor that Macular Degeneration causes FTD in any way. I am merely saying that when I read the research on study whether FTD can be diagnosed earlier via examination of the Retina. Also that the symptoms are quite similar. An extreme example is a headache. Is it sinus, is it stress, is it a migraine or a brain tumor.
Symptoms occur in many similar illnesses.
I hear from many with FTD and/or their caregivers complaining of double vision and, even more so, loss of depth perception. The symptoms I mentioned, such as double vision, loss of depth perception and changes in size of image or intensity of color can all be caused by the two eyes not working together.
Each eye sees its own separate image. The two images are put back together, in the brain, into a single image once more. I have no problem accepting that the vision issues are in the brain not being able to do its part, not the eyes.
Because of this, most of FTD vision issues cannot be corrected by visiting the "eye doctor." I can definitely say, in my case, that the differences between the two images constantly vary as they fluctuate constantly. No eyeglasses, even with prism lenses (which work when it is an eye muscle issue causing double vision) do not help for any length of time, if at all.
I must caution that if you are exhibiting any of these symptoms, you should be evaluated by a qualified ophthalmologist or retinal specialist. As I said above, I do have wet macular degeneration and regularly must get injections of medication into my left eye because my macula is actually degenerating. This does not cure the symptoms I have discussed, but it does keep it from totally stealing all the vision of that eye.
I wrote about eye issues quite a while ago in a blog. However, since the past couple weeks, multiple questions have been posted in the support groups that I decided it was times to write about the vision issues once more. Plus, I understand the issues even more than I did before.
For the caregivers, eye issues may explain things like how the FTD'er used to watch movies, television and/or read and no longer have interest in those. It can also explain many other issues, such as tripping, falling and dizziness. Personally, I must watch my feet when walking because I cannot see any difference in the surface I am walking on. For me, I believe I have mentioned in previous posts on the subject, Strangely, ramps and very small changes in depth are the worst. The absolute worst are corners that are adapted to meet disability standards. There are different slopes, beginning at the sidewalk and the street. To make it worse, the sides also slope so that if you are not smack dab in the middle, there are multiple elevations to deal with. THEN, they mess with the brain by being curved and often painted yellow, both of which make it even more difficult to sense the changes in the pavement.
For those with FTD, if you are not comfortable walking outside, take a look at the sidewalks, cracks and the sloping corners to see if that is one of the reasons it makes walking so difficult. Stepping off curbs is a hazard as well, at least for me, because with no depth perception, I cannot tell how high the step is. I find myself holding onto to something or someone and stepping up or down slowly and carefully in order to not fall. Even then, when my foot hits solid ground, it is a shock everytime.
It is safe to say that everything all do is eye-related. The only exception to that is when I am sleeping. I am able to walk just fine in my dreams. Again for the caregivers, try walking around your house or backyard with your eyes closed. That will give you an idea of what we constantly deal with plus help you find things that should be changed or moved. For me, the absolute worst is when something appears right in front of my face. Moving things closer does not help me at all. If I turn a corner in my hallway and there is an object right there, it startles me even if it has been there for ten years.
One more suggestion, this time for those of us with FTD, I find that watching television with only one eye makes it doable again once you get used to it. I usually drape a cloth over my head to cover the weaker eye. I am also getting good at keeping one eye closed. Please use caution though, when you open or uncover the eye, the shock of the difference in light for the covered eye can make you dizzy for half a minute or so. For me, it is worth learning to remain still for a minute before standing and walking.
Again, to the caregivers, these eye issues can explain a lot of the things that upset you about your FTD'er. Why they do not recognize your face yet still seem to know who you are after a while, why they are constantly losing things (they aren't lost, they just cannot see them... there is a difference). The eye issues can take away the enjoyment of many things they used to love. If you ask, do you see two of everything, they may not realize they do. If you ask them if their eyes make it difficult to walk, you just might get a blank stare. That doesn't mean the issue isn't there. It might be that they simply don't recognize the symptoms exist.
Another suggestion is to decide what are the most important things to them. You can put a large and bright colored sticker on them as an experiment to see if it helps. We all know, though, just because something works for me does not mean it will work for your FTD'er. Experiment with different things to make important things more visible in case you can make their life just a tad easier.
If any of you have any other suggestions, especially to help an FTD'er more able to find things, please let me know because I really could use some!
Some of the symptoms of macular degeneration are visual distortions. One example of this is straight lines seeming bent. It also often causes reduced central vision in one or both eyes, the need for brighter lights and increased difficulty to adjust to lower lighting such as in restaurants. Words may become blurry, especially on the printed page. Now for a couple that I did not know, but have been experiencing for years, worsening as my FTD progresses. It can cause decreased intensity or brightness of colors, loss of depth perception and objects may vary in size between the two eyes.
One that surprised me as I researched this today is difficulty in recognizing faces! I experience, and have heard of others with FTD experiencing, increasing difficulty in recognizing faces. For instance, all men with dark hair look like the same person, all women with long blond hair look alike. This is accentuated even further on television. The second that surprised me is difficulty in recognizing objects we are searching for. For me, the most embarrassing is when I am needing the remote control and become out of control from frustration only to have someone point to it and I had been looking right at it.
I am not alone in experiencing these gaps between vision and recognizing objects. Many of my friends with FTD talk about experiencing the same thing.
I am not suggesting that everyone with FTD has Macular Degeneration nor that Macular Degeneration causes FTD in any way. I am merely saying that when I read the research on study whether FTD can be diagnosed earlier via examination of the Retina. Also that the symptoms are quite similar. An extreme example is a headache. Is it sinus, is it stress, is it a migraine or a brain tumor.
Symptoms occur in many similar illnesses.
I hear from many with FTD and/or their caregivers complaining of double vision and, even more so, loss of depth perception. The symptoms I mentioned, such as double vision, loss of depth perception and changes in size of image or intensity of color can all be caused by the two eyes not working together.
Each eye sees its own separate image. The two images are put back together, in the brain, into a single image once more. I have no problem accepting that the vision issues are in the brain not being able to do its part, not the eyes.
Because of this, most of FTD vision issues cannot be corrected by visiting the "eye doctor." I can definitely say, in my case, that the differences between the two images constantly vary as they fluctuate constantly. No eyeglasses, even with prism lenses (which work when it is an eye muscle issue causing double vision) do not help for any length of time, if at all.
I must caution that if you are exhibiting any of these symptoms, you should be evaluated by a qualified ophthalmologist or retinal specialist. As I said above, I do have wet macular degeneration and regularly must get injections of medication into my left eye because my macula is actually degenerating. This does not cure the symptoms I have discussed, but it does keep it from totally stealing all the vision of that eye.
I wrote about eye issues quite a while ago in a blog. However, since the past couple weeks, multiple questions have been posted in the support groups that I decided it was times to write about the vision issues once more. Plus, I understand the issues even more than I did before.
For the caregivers, eye issues may explain things like how the FTD'er used to watch movies, television and/or read and no longer have interest in those. It can also explain many other issues, such as tripping, falling and dizziness. Personally, I must watch my feet when walking because I cannot see any difference in the surface I am walking on. For me, I believe I have mentioned in previous posts on the subject, Strangely, ramps and very small changes in depth are the worst. The absolute worst are corners that are adapted to meet disability standards. There are different slopes, beginning at the sidewalk and the street. To make it worse, the sides also slope so that if you are not smack dab in the middle, there are multiple elevations to deal with. THEN, they mess with the brain by being curved and often painted yellow, both of which make it even more difficult to sense the changes in the pavement.
For those with FTD, if you are not comfortable walking outside, take a look at the sidewalks, cracks and the sloping corners to see if that is one of the reasons it makes walking so difficult. Stepping off curbs is a hazard as well, at least for me, because with no depth perception, I cannot tell how high the step is. I find myself holding onto to something or someone and stepping up or down slowly and carefully in order to not fall. Even then, when my foot hits solid ground, it is a shock everytime.
It is safe to say that everything all do is eye-related. The only exception to that is when I am sleeping. I am able to walk just fine in my dreams. Again for the caregivers, try walking around your house or backyard with your eyes closed. That will give you an idea of what we constantly deal with plus help you find things that should be changed or moved. For me, the absolute worst is when something appears right in front of my face. Moving things closer does not help me at all. If I turn a corner in my hallway and there is an object right there, it startles me even if it has been there for ten years.
One more suggestion, this time for those of us with FTD, I find that watching television with only one eye makes it doable again once you get used to it. I usually drape a cloth over my head to cover the weaker eye. I am also getting good at keeping one eye closed. Please use caution though, when you open or uncover the eye, the shock of the difference in light for the covered eye can make you dizzy for half a minute or so. For me, it is worth learning to remain still for a minute before standing and walking.
Again, to the caregivers, these eye issues can explain a lot of the things that upset you about your FTD'er. Why they do not recognize your face yet still seem to know who you are after a while, why they are constantly losing things (they aren't lost, they just cannot see them... there is a difference). The eye issues can take away the enjoyment of many things they used to love. If you ask, do you see two of everything, they may not realize they do. If you ask them if their eyes make it difficult to walk, you just might get a blank stare. That doesn't mean the issue isn't there. It might be that they simply don't recognize the symptoms exist.
Another suggestion is to decide what are the most important things to them. You can put a large and bright colored sticker on them as an experiment to see if it helps. We all know, though, just because something works for me does not mean it will work for your FTD'er. Experiment with different things to make important things more visible in case you can make their life just a tad easier.
If any of you have any other suggestions, especially to help an FTD'er more able to find things, please let me know because I really could use some!
2 comments:
July 2009 I was diagnosed with Frontotemporal lob dementia(FTD) with a neuropsychological and a QEEG Brain Mapping. The atrophy will not show up on an MRI until February 2011. I am now 11 years from diagnoses and still cognitively within normal range for my age. I have been doing neurofeedback, biofeedback, cognitive and light therapy. I am on Medicare and now denied mental health counseling/therapy for the rest of my life. Medicare has a policy anyone who has a dementia and/or Alzheimer’s has no right to any kind of mental health services. No one who has ever examed me made the decision I fit the following: “Psychotherapy services are not considered to be medically reasonable and necessary when they are rendered to a patient who has a medical/neurological condition such as dementia, delirium or other psychiatric conditions, which have produced a severe enough cognitive deficit to prevent effective communication with interaction of sufficient quality to allow insight oriented therapy (i.e. behavioral modification techniques, interpersonal psychotherapy techniques, supportive therapy or cognitive/behavioral techniques).” April 2019 I was denied any more mental health services because now Medicare recognizes I have dementia. My Florida licensed psychologist is having all the money paid by Medicare for the past12 months of counseling/therapy I did in the office taken back by Medicare because I should have never been treated. Medicare claims there were clerical eras in her notes which is a lie. Medicare won’t pay for maintains of cognitive ability. I can only have therapy that is “medically necessary” and maintaining cognitive abilities is not medically necessary. I had no right to counseling and therapy because I have dementia and that means I am not able to “benefit” from any mental health services. I only have a right to medical care which is medications to control my behaviors and will advance my dementia. While I wait to be in real dementia I am a free special ed advocate helping parents fight in due process hearings for their children’s rights to a Free Appropriate Public Education(FAPE). School lawyers and administrative law judges/impartial hearing officers in many states don’t say I am in dementia but Medicare does. Linda D. Montalbano 352-282-2539 urania32@hotmail.com
PS: I have over $10,000 in neurofeedback, biofeedback, cognitive and light therapy equipment at home that I have paid for (Not covered by Medicare) and do all my therapy everyday at home alone unsupervised any more while I now wait to lose cognitive function and die.
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