I do not understand my brain at all. This past week, I learned how to video chat and participated in two successful Zoom video chats. Now I might even join my support group's weekly chats. Of course I will have to get up early, do my hair and makeup and put on something pretty... nothing vain about me!
I would be really happy about learning something new, except that this past week I also started struggling with the TV remote control and some things on the computer. My brain retains useless knowledge, yet it can't retain how to use the remote? But then again, by next week I may not be able to remember how to do the Zoom chats either. Have I said lately how much I hate this disease?
I can stand at the stove and create a really delicious meal, but I can't figure out how to set the timer on the microwave to know when the meal is ready to come out of the oven. I think I have explained before that since FTD, I have been able to create really great meals, but I do it by taste. I cannot follow recipes much at all.
Now, I wonder if my brain compensated somehow or made a new pathway so that I could create the food by taste. Was it that, or is it just that since I am no longer able to work and am home most of the time, that I do it well now simply because I have the time? It does get a little frustrating when I am thinking of what to cook and I think "Oooh, that chicken I made last week was awesome, maybe I could make that again. Oops, I wonder what I put in it or what it tasted like?"
I guess I shouldn't be too hard on myself for not figuring it out. If anyone could, we might have a cure or treatment by now.
Another thing that has boggled my mind for quite a while is why do they continue to prescribe the drugs that delay the progression of Alzheimer's Disease for those with FTD when they know that they do not work for FTD? Where I live is not exactly a hub of medical research, far from it, but we do have some good physicians. It upset me tremendously when my husband told me that, a few months ago at a local caregivers' conference, the preeminent psychiatrist in this area spoke to them. He actually stood there and said "We know the Alzheimer's drugs don't work for FTD, but we use them anyway."
I know I mentioned that in a blog back when it occurred, but there is a reason I am repeating the story. Today, I was chatting online with someone who is a care partner with someone with FTD. The person with FTD was prescribed the Alzheimer's medications and they really hated the side effects and did not feel they were doing any good. They did some research, found out they were contra-indicated for FTD and demanded that they be discontinued. After stopping, there was no progression of symptoms and they were saving a whole lot of money.
I know for myself, when I was still on the Alzheimer's drugs, I would go into the Medicare "donut hole" in just three months each year, meaning we paid out-of-pocket for all my meds the remainder of the year. Fortunately, there are now generics so that, while they are still expensive, it is a little better. I was wondering out loud (or rather typing out loud if that is possible) why they insist on continuing to prescribe the drugs. The woman I was conversing with said something like "Because the doctors are pressured so much by the pharmaceutical companies." Now that was an interesting thought and a quite upsetting one if there is any truth to it.
If I had to guess, I would lean toward thinking that yes, it could be true in many cases. I hope, though, that the rest of the cases are because, first of all, so many doctors have no clue about anything related to FTD. They think "dementia" and think if the drugs work for one disease that causes dementia, it must work for all of them. The other scenario I thought of was that the strong desire they have to help their patients might just lead them to trying the drugs because there are no alternatives and they are truly hoping that the drugs just might work.
Bottom line is that life with FTD is frustrating. We never know when we will lose the ability to do something we always did without thinking. That includes everything from the remote control to the ability to walk properly. A thought just occurred to me: FTD = Frustrating Terminal Disease. That says it all.
Sunday, March 26, 2017
Sunday, March 19, 2017
Finding Some of the Old Me
https://www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf
This link is to the booklet that I have mentioned before. Late last year, I actually had the entire document as a blog entry. I keep getting comments from people who say it has helped them which thrills me that I can contribute in some way. Because of that, I decided I would include the link to the document the way it was published by the AFTD. It is merely common sense approaches to the myriad of problems FTD brings to us. I have been both caregiver and, now, one with FTD myself. It gives me two ways to view things. If you haven't already seen it, please check it out to see if it can help you at all.
This week, I joined the 21st century. I now have an e tablet. It is pretty amazing and does a whole lot more than my old Nook does. The only problem, now that I own it, is trying to figure out how it works. I just finished downloading the owner's guide from the company's website. 78 pages!!! No wonder I could not instantly figure it out.
I bought my tablet from a young woman I have become to consider a friend. She is an example of how some of my empathy came through even though it had been missing to a huge extent since early in my disease process. I still don't have the compassion that I used to have and I don't cry at much. Many of us with FTD are reluctant to attend funerals because we know that we might slip out of the proper demeanor. Not only would we not appear sympathetic or empathetic, but it is in the realm of possibility that we could break out in laughter.
Back to my friend. She has had way too many bad times in her life for such a young woman. When I first met her and her husband at the time, I immediately sensed an abusive relationship. Fortunately, she realized she did not deserve being treated that way and she broke free. She now has a new husband and seems much happier. That, in turn, makes me happy as well. The two of them, along with their two children, delivered the tablet to me Friday evening. Our husbands started talking cars, so we had lots of time to catch up and I was able to get to know the kids. I mention her personal story, not just because I admire her for getting out of an abusive relationship, but because it was my empathy toward her that has drawn us together and allowed us to keep up a relationship for a year and a half. Hopefully that will continue for a long time.
We sat and talked, her two children talked and bounced around the room as kids do. Usually, that much activity would have caused me to freak out and either start screaming or run away. I believe my empathy toward her was so strong that I could handle the commotion. I have, before FTD, tried to help abused women in any way I could. It was our common abuse experiences that drew us together.
I am thrilled that my lack of empathy still allowed for us to keep in touch and to get to know each other better. It is heart warming to know that while I tend, since FTD, to be cold and uncaring, enough of the old me still exists in my brain and can find its way past that empathy barrier. No, I am not suggesting that the disease has reversed itself. I know that there is still not much hope for it in my lifetime. It is simply that I am overjoyed that there are still bits of the "real me" with me.
While I was struggling with figuring out this tablet all day yesterday, I realized that if I had asked her 9-year-old son to help, he would have had it whipped into shape in a matter of minutes. Meanwhile, I just printed out a 73-page owner's guide. I hope I can report next week that I figure some of it out. Otherwise, when I see my daughter in May, I will have to beg her to help.
Now, for an update. The Association for FTD conducts a fundraiser during February, its "With Love" campaign. When I read about it in their newsletter, I thought "Hey, I can do this!" because they do all the work, I just needed to contact people. I set my goal at raising $4000 and thanks to the generosity of my family and friends, we did it! Even better, the entire campaign met its entire goal and raised the most money yet. So, to those of my friends and family who read this, I say a huge "THANK YOU!" If I offended any of you with my begging and pleading, I am sorry. But, guess what, you'll hear the same begging and pleading next year! Thanks again!
This link is to the booklet that I have mentioned before. Late last year, I actually had the entire document as a blog entry. I keep getting comments from people who say it has helped them which thrills me that I can contribute in some way. Because of that, I decided I would include the link to the document the way it was published by the AFTD. It is merely common sense approaches to the myriad of problems FTD brings to us. I have been both caregiver and, now, one with FTD myself. It gives me two ways to view things. If you haven't already seen it, please check it out to see if it can help you at all.
This week, I joined the 21st century. I now have an e tablet. It is pretty amazing and does a whole lot more than my old Nook does. The only problem, now that I own it, is trying to figure out how it works. I just finished downloading the owner's guide from the company's website. 78 pages!!! No wonder I could not instantly figure it out.
I bought my tablet from a young woman I have become to consider a friend. She is an example of how some of my empathy came through even though it had been missing to a huge extent since early in my disease process. I still don't have the compassion that I used to have and I don't cry at much. Many of us with FTD are reluctant to attend funerals because we know that we might slip out of the proper demeanor. Not only would we not appear sympathetic or empathetic, but it is in the realm of possibility that we could break out in laughter.
Back to my friend. She has had way too many bad times in her life for such a young woman. When I first met her and her husband at the time, I immediately sensed an abusive relationship. Fortunately, she realized she did not deserve being treated that way and she broke free. She now has a new husband and seems much happier. That, in turn, makes me happy as well. The two of them, along with their two children, delivered the tablet to me Friday evening. Our husbands started talking cars, so we had lots of time to catch up and I was able to get to know the kids. I mention her personal story, not just because I admire her for getting out of an abusive relationship, but because it was my empathy toward her that has drawn us together and allowed us to keep up a relationship for a year and a half. Hopefully that will continue for a long time.
We sat and talked, her two children talked and bounced around the room as kids do. Usually, that much activity would have caused me to freak out and either start screaming or run away. I believe my empathy toward her was so strong that I could handle the commotion. I have, before FTD, tried to help abused women in any way I could. It was our common abuse experiences that drew us together.
I am thrilled that my lack of empathy still allowed for us to keep in touch and to get to know each other better. It is heart warming to know that while I tend, since FTD, to be cold and uncaring, enough of the old me still exists in my brain and can find its way past that empathy barrier. No, I am not suggesting that the disease has reversed itself. I know that there is still not much hope for it in my lifetime. It is simply that I am overjoyed that there are still bits of the "real me" with me.
While I was struggling with figuring out this tablet all day yesterday, I realized that if I had asked her 9-year-old son to help, he would have had it whipped into shape in a matter of minutes. Meanwhile, I just printed out a 73-page owner's guide. I hope I can report next week that I figure some of it out. Otherwise, when I see my daughter in May, I will have to beg her to help.
Now, for an update. The Association for FTD conducts a fundraiser during February, its "With Love" campaign. When I read about it in their newsletter, I thought "Hey, I can do this!" because they do all the work, I just needed to contact people. I set my goal at raising $4000 and thanks to the generosity of my family and friends, we did it! Even better, the entire campaign met its entire goal and raised the most money yet. So, to those of my friends and family who read this, I say a huge "THANK YOU!" If I offended any of you with my begging and pleading, I am sorry. But, guess what, you'll hear the same begging and pleading next year! Thanks again!
Sunday, March 12, 2017
Caregivers Rock (Most of the Time)
I admire every caregiver out there, especially those who are care partners to those with dementia. Of course I most closely relate to those dealing with FTD. I have been in their shoes. I have been in the caregiver role with family members who had FTD before me. Don't ask me which is more difficult. They are both horrible in their own ways.
My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.
Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.
She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!
Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.
What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.
The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.
When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.
This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.
I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.
It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!
My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.
Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.
She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!
Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.
What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.
The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.
When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.
This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.
I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.
It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!
Sunday, March 5, 2017
Brain Strain is a Pain
I swear there is a phenomena with FTD that causes all other illnesses to be worse. I doubt there is any scientific validity to this, but I have experienced it many times. I get a cold, it develops into bronchitis or pneumonia. I have a gout attack, it immobilizes me. I have a headache, it stays for days and feels like the worst migraine ever.
Wait, that last one is true. FTD headaches are the absolute worst and this comes from someone who has suffered from migraines her entire life. I have experienced gout pain for years as well. Those have always been controlled by diet and eating dried cherries which can act as an anti-inflammatory, so no problem. Since FTD, even though my diet is much healthier than it was while I was still employed, I get horrendous gout attacks. Attacks so bad that I had to use crutches and a wheelchair. By the way, I can also attest that it is difficult for someone with FTD to understand the workings of crutches.
The gout attacks have become frequent and increasingly severe. I also, months ago, experienced a kidney stone that, when analyzed, was caused by excess uric acid. After that really severe case of gout, I agreed to go on uric acid reducing medication. According to my lab reports, it has been effective. According to my foot, not so much.
My theory is fairly simple but is not founded on any medical evidence or research that I have read or heard. I believe that the stress of coping with FTD is an enormous burden on the human body as well as the brain. Because of this constant strain on the brain, I believe there is not enough energy left to fight off these irritating illnesses. The immune system is just over-taxed and can't keep up.
I have steps that I take to help my body deal with the reduced ability to fight things off. I get my vaccines for flu, shingles and pneumonia. I know there is a huge debate out there about the safety of those vaccines. For me, weighing the assistance to fight these diseases far outweighs the perceived risks of the disease. They stopped using live virus for flu vaccines years ago, so you cannot develop the flu from the vaccine. One word of extreme caution: This is not true of the NASAL vaccine. It IS made from live viruses and should never be taken by the elderly or those with compromised immune systems.
I avoid going out in crowds. I have learned when the grocery store is the least crowded and do my shopping during that time. I avoid movie theatres, malls and any place with large crowds of people. Unfortunately, this includes church as well. I have found that people think they must go to church, even if they are not feeling well. We go to restaurants during off-peak hours. You get the concept, I am sure.
I take echinacea and vitamin C (I use Ester-C, but there are many other brands.) every time I get home from a crowd, a doctor's office or from being exposed to anyone who displays any sign of possible illness. You sniffle in front of me, I take them both to boost my immune system. I am also one of those irritating shoppers who stands at the cart area of the store and clean my cart. Let me apologize here to all the people whose lives I have slowed by 30 seconds. I try to get out of the main traffic patterns, but sometimes you can't. Some times I apologize but, I admit it, most times I do not. I figure if someone gets that angry and upset from losing less than a minute out of their lives, they aren't going to appreciate my apology anyway.
I was prompted to write on this subject today because of something I am experiencing right now. For about 12 years now, I have had macular degeneration in my left eye. It was caused by an unusual disease, histoplasmosis, that in rare cases can spread to the eyes. (Yes, I do seem to be the queen of rare diseases.) Because of this, I have very little vision in my left eye. Yesterday, I realized I am showing the signs of macular degeneration in my remaining good eye. I was never very frightened when this happened in my left eye, probably because I still had one good eye remaining, but I am now!
Now that I am seeing symptoms of macular degeneration in my right eye, I am very frightened. Reading is a cherished enjoyment since FTD has stolen so many others. I have been extremely lucky to still be able to read and understand books. As I have explained many time before, the books cannot be complicated, but reading is still one of my favorite things to do. The thought of losing that ability is downright terrifying to me. There is also the fear of not being able to do much of anything. I also know my husband will dress me funny. This has been a standing family joke for years since he has no fashion sense at all.
To tie this into the beginning of this diatribe... Dealing with the stress and fear of the black spot in the middle of my vision is adding to the strain of FTD. Since discovering the problem, I am stumbling more, stuttering more and my thinking is much fuzzier than usual. It makes sense to me somehow. My brain is trying to deal with the stress and the fear from the eye issue which takes away from its ability to cope with my FTD symptoms.
I guess this all makes me think of that little childhood ditty of "The head bone's connected to the neck bone, neck bone's connected to the back bone.... them crazy bones." Let's start a new one, "The brain is connected to my worry bones, the brain is connected to my gouty bones, the brain is connected to my.... that crazy brain." Nah, doesn't have the same ring to it. I don't think it will catch on, but it does explain some things.
Wait, that last one is true. FTD headaches are the absolute worst and this comes from someone who has suffered from migraines her entire life. I have experienced gout pain for years as well. Those have always been controlled by diet and eating dried cherries which can act as an anti-inflammatory, so no problem. Since FTD, even though my diet is much healthier than it was while I was still employed, I get horrendous gout attacks. Attacks so bad that I had to use crutches and a wheelchair. By the way, I can also attest that it is difficult for someone with FTD to understand the workings of crutches.
The gout attacks have become frequent and increasingly severe. I also, months ago, experienced a kidney stone that, when analyzed, was caused by excess uric acid. After that really severe case of gout, I agreed to go on uric acid reducing medication. According to my lab reports, it has been effective. According to my foot, not so much.
My theory is fairly simple but is not founded on any medical evidence or research that I have read or heard. I believe that the stress of coping with FTD is an enormous burden on the human body as well as the brain. Because of this constant strain on the brain, I believe there is not enough energy left to fight off these irritating illnesses. The immune system is just over-taxed and can't keep up.
I have steps that I take to help my body deal with the reduced ability to fight things off. I get my vaccines for flu, shingles and pneumonia. I know there is a huge debate out there about the safety of those vaccines. For me, weighing the assistance to fight these diseases far outweighs the perceived risks of the disease. They stopped using live virus for flu vaccines years ago, so you cannot develop the flu from the vaccine. One word of extreme caution: This is not true of the NASAL vaccine. It IS made from live viruses and should never be taken by the elderly or those with compromised immune systems.
I avoid going out in crowds. I have learned when the grocery store is the least crowded and do my shopping during that time. I avoid movie theatres, malls and any place with large crowds of people. Unfortunately, this includes church as well. I have found that people think they must go to church, even if they are not feeling well. We go to restaurants during off-peak hours. You get the concept, I am sure.
I take echinacea and vitamin C (I use Ester-C, but there are many other brands.) every time I get home from a crowd, a doctor's office or from being exposed to anyone who displays any sign of possible illness. You sniffle in front of me, I take them both to boost my immune system. I am also one of those irritating shoppers who stands at the cart area of the store and clean my cart. Let me apologize here to all the people whose lives I have slowed by 30 seconds. I try to get out of the main traffic patterns, but sometimes you can't. Some times I apologize but, I admit it, most times I do not. I figure if someone gets that angry and upset from losing less than a minute out of their lives, they aren't going to appreciate my apology anyway.
I was prompted to write on this subject today because of something I am experiencing right now. For about 12 years now, I have had macular degeneration in my left eye. It was caused by an unusual disease, histoplasmosis, that in rare cases can spread to the eyes. (Yes, I do seem to be the queen of rare diseases.) Because of this, I have very little vision in my left eye. Yesterday, I realized I am showing the signs of macular degeneration in my remaining good eye. I was never very frightened when this happened in my left eye, probably because I still had one good eye remaining, but I am now!
Now that I am seeing symptoms of macular degeneration in my right eye, I am very frightened. Reading is a cherished enjoyment since FTD has stolen so many others. I have been extremely lucky to still be able to read and understand books. As I have explained many time before, the books cannot be complicated, but reading is still one of my favorite things to do. The thought of losing that ability is downright terrifying to me. There is also the fear of not being able to do much of anything. I also know my husband will dress me funny. This has been a standing family joke for years since he has no fashion sense at all.
To tie this into the beginning of this diatribe... Dealing with the stress and fear of the black spot in the middle of my vision is adding to the strain of FTD. Since discovering the problem, I am stumbling more, stuttering more and my thinking is much fuzzier than usual. It makes sense to me somehow. My brain is trying to deal with the stress and the fear from the eye issue which takes away from its ability to cope with my FTD symptoms.
I guess this all makes me think of that little childhood ditty of "The head bone's connected to the neck bone, neck bone's connected to the back bone.... them crazy bones." Let's start a new one, "The brain is connected to my worry bones, the brain is connected to my gouty bones, the brain is connected to my.... that crazy brain." Nah, doesn't have the same ring to it. I don't think it will catch on, but it does explain some things.
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