Forget the song about rainy days and Mondays. Today I am thinking snowy days and Sundays. But I refuse to let them get me down.
Today, once again, I witnessed a caregiver complaining about their family member craving sweets. She also said she makes sure there are no sweets in the house. I strongly disagree with this tactic. FTD brings so many frustrations and so much discomfort with it that I cannot see intentionally adding to it.
For most people, FTD brings along with it, an intense need for sweets and carbs. I say intense need, because it is beyond a craving in my opinion. You cannot control the desire and need for sweets without causing a lot of discomfort. One theory behind this is that we crave these high calorie foods, and pack on weight, because we will need the extra weight later on in the disease. Eh, maybe, I guess.
I have hung onto a piece of paper with this info on it for a few months. I apologize that I cannot give the source:
"Neuroscientists have shown, using fMRI to scan the brain‘s activity in real-time, that sugar leads to dopamine release in the nucleus accumbens – an area associated with motivation, novelty, and reward. This is the same brain region implicated in response to cocaine and heroin."
Perhaps this information explains why the craving is so extreme and craving sweets is a whole lot better than craving drugs. The sugar also gives an instant bit of energy. Those with FTD lose so much energy and long for the days, pre-FTD, when we actually had energy to do things. Also, we feel downright crappy quite often. If the sugar consumed does trigger motivation, enjoyment (novelty) and a feeling of pleasure (reward), it makes sense to me that this creates a feeling of need.
One thing I remember learning years ago is that hunger for food and hunger from sex come from the same area of the brain. We already realize that FTD often brings out an increased interest in sex. From these two facts, it is pretty easy to conclude that it is our brain that is screaming for the treats.
What I try to do, and have suggested often to others, is to try to make sure the sweets I am eating have at least a modicum of nutritional value. I love Quaker Dipps. They are granola type bars coated in chocolate and a couple of the flavors, caramel nut and peanut butter, taste like a good candy bar to me. I realize the nutritional value is small, but there are some oats in there and a tiny bit of nuts. A small amount is better than none. I try to eat dark chocolate when I am craving chocolate.
I also try to make my own snacks as often as I have a clear-headed day with a little extra energy. I make a few different kinds of cookies that are mostly ground oats. I have also had some success with sneaking in a little powdered dry milk without ruining the recipe results, the same with peanut butter or adding some nuts or dried fruit. I use natural peanut butter instead of the more processed kinds.
Many people use low fat yogurt as a sweet snack, but I am not a yogurt lover. I barely tolerate it. I do like cottage cheese with some canned fruit over it. Even some peanut butter and crackers will do it for me sometimes.
I try to make sure my sweets have some nutritional value. Other times, the need is so strong, I will eat anything to satisfy the need.
I strongly believe that the caregivers who think, by depriving the sweets and carbs, that they are helping and doing good for their loved one, are wrong. Being deprived of the sweets and carbs that we crave increases our frustration, irritability and stress. It takes away one of our last sources of pleasure. I think it comes close to cruel and unusual punishment.
One final point, one that is totally "in your face," FTD is going to kill us. We don't have much life expectancy left. The pleasures we still have in our lives are few. Why should we be denied one of the very few things that give us pleasure?
Okay, I am done with this rant. Time to go have a sweet carb or two, then settle in with a glass of wine and watch it snow!
Sunday, February 26, 2017
Sunday, February 19, 2017
Why Do I Feel So Crappy?
I have been feeling downright crappy the past few days. No illness to put my finger on, just a normal FTD headache that I can't stop with my normal self-help of caffeine and reiki. Even sticking my head under really hot water isn't helping. I know this sounds backward. Most headaches respond better to putting cold on your head to dilate the blood vessels. My FTD headaches actually worsen with cold. I always did have to be different. I don't believe it is the headache that is making me feel crappy, it is the other way around. Feeling crappy has given me the headache.
It isn't the weather that is affecting me. It is mid-February and I live in central Pennsylvania. Not only is it not snowing, it is sunny and almost 70 degrees and days like this one are a true and unexpected gift. Yet, I am grumpy and feeling angry at everything and everyone and every little ache and pain seems magnified. I don't envy my husband at all. I can't even stand to be around me.
This brings me to the question: Which is worse, having FTD yourself or caring for someone who has it? My answer varies from day to day. Today, I would say my husband has the wrong end of the deal. Other days, it is me.
I have lived this disease from both sides, as a care partner and as the one with FTD. Trust me, they both just plain suck sometimes! The frustrations of being the caregiver can be extreme. You are watching someone you care about struggle to live a good life while dealing with the effects of the disease. Some days, I visualize myself as going through life with a 20 lb. ball attached to each ankle. This extra struggle makes everything difficult. The caregiver is there, willing to take some of the burden of the weight. The problem then becomes that they are carrying around their share of the extra burden while trying to deal with everything else in life.
Often times, the caregiver is still employed full time since loss of employment is the norm, rather that the exception, for the one with FTD. They also have to take on all the responsibilities like taking care of the finances, the pets, the kids, household repairs, car maintenance, shopping, cooking, laundry, house cleaning and on and on. These tasks used to be divided up and yet could still be overwhelming at times. Now though, it is all on the caregiver. All this on top of trying to ease the burden on the person for whom they are caring. When do you sleep? How can you maintain a healthy diet? Being the caregiver is not an easy life.
We are a little better off than many dealing with the issues of FTD. My husband retired early before we realized there was something wrong with me. Of course, it wasn't long until I was "retired" or "fired" depending on which way you look at it. He had already taken on some of the household chores, including laundry, and I was still able to cook and care for the house. Now that even those tasks are becoming quite challenging for me, it keeps getting more difficult.
It is a dirty trick how FTD seems to make many, if not all, of us very quick to anger and quick to become frustrated. I can still dress myself, but putting my jacket on and taking it off has become difficult. The zipper and sleeves of my jacket seems to be defective. The zipper just won't put itself together and pull itself up. I have to struggle to see the two sides of the zipper (not easy with the double vision FTD has given me) and figure out how they can possibly fit together. Then, the armholes always seem to move and hide so that my arms can't figure out how to get into them. My husband is always right there to help but, after struggling, I am so angry and frustrated that it is too late for me to accept it. Not being able to be self sufficient enough to do simple things is a horrible feeling. As a result, I go out with an unzipped jacket more often that I should.
Realistically, I do understand that I should ask for help ahead of time or explain to him that I need him to help me with tasks that are challenging me each time before I get myself so tied up in knots. To me, that is a horrible option and would be like admitting I am useless. Don't say it. I know it doesn't make me useless, but trying to stop those feelings is like trying to stop a freight train with my bare hands.
This is just one of the stupid things that happen throughout the day that leave me angry and frustrated. It is so difficult to explain to anyone how often things like this happen throughout each day. Once I have a day containing enough situations like this, I am done. I am exhausted from the anger and frustration and so sad that this is how it is forever going to be, that it will only get worse.
Even when I have good days, like last weekend when I successfully made Valentine's cookies, until I realize how worn out I am from struggling with even a successful task.
Anyway, this has been a long and round-about way of explaining why some days I feel so crappy when there is no reason that I can identify. During days like this, I have to just keep plugging away and stay away from people so I don't lash out at them. Now, everyone who knows me well enough is going to say i is okay and that they are willing to take the chance and would just shake off the abuse if I do blow up. If only it were that simple. Can you imagine how frustrated and angry with myself I am after I do lash out at people who love me? I can't take the risk.
I think it is a pile up of these kind of things that is making me feel crappy, not a pending illness. Fortunately, it will disappear as quickly as it came on. It just takes longer!
It isn't the weather that is affecting me. It is mid-February and I live in central Pennsylvania. Not only is it not snowing, it is sunny and almost 70 degrees and days like this one are a true and unexpected gift. Yet, I am grumpy and feeling angry at everything and everyone and every little ache and pain seems magnified. I don't envy my husband at all. I can't even stand to be around me.
This brings me to the question: Which is worse, having FTD yourself or caring for someone who has it? My answer varies from day to day. Today, I would say my husband has the wrong end of the deal. Other days, it is me.
I have lived this disease from both sides, as a care partner and as the one with FTD. Trust me, they both just plain suck sometimes! The frustrations of being the caregiver can be extreme. You are watching someone you care about struggle to live a good life while dealing with the effects of the disease. Some days, I visualize myself as going through life with a 20 lb. ball attached to each ankle. This extra struggle makes everything difficult. The caregiver is there, willing to take some of the burden of the weight. The problem then becomes that they are carrying around their share of the extra burden while trying to deal with everything else in life.
Often times, the caregiver is still employed full time since loss of employment is the norm, rather that the exception, for the one with FTD. They also have to take on all the responsibilities like taking care of the finances, the pets, the kids, household repairs, car maintenance, shopping, cooking, laundry, house cleaning and on and on. These tasks used to be divided up and yet could still be overwhelming at times. Now though, it is all on the caregiver. All this on top of trying to ease the burden on the person for whom they are caring. When do you sleep? How can you maintain a healthy diet? Being the caregiver is not an easy life.
We are a little better off than many dealing with the issues of FTD. My husband retired early before we realized there was something wrong with me. Of course, it wasn't long until I was "retired" or "fired" depending on which way you look at it. He had already taken on some of the household chores, including laundry, and I was still able to cook and care for the house. Now that even those tasks are becoming quite challenging for me, it keeps getting more difficult.
It is a dirty trick how FTD seems to make many, if not all, of us very quick to anger and quick to become frustrated. I can still dress myself, but putting my jacket on and taking it off has become difficult. The zipper and sleeves of my jacket seems to be defective. The zipper just won't put itself together and pull itself up. I have to struggle to see the two sides of the zipper (not easy with the double vision FTD has given me) and figure out how they can possibly fit together. Then, the armholes always seem to move and hide so that my arms can't figure out how to get into them. My husband is always right there to help but, after struggling, I am so angry and frustrated that it is too late for me to accept it. Not being able to be self sufficient enough to do simple things is a horrible feeling. As a result, I go out with an unzipped jacket more often that I should.
Realistically, I do understand that I should ask for help ahead of time or explain to him that I need him to help me with tasks that are challenging me each time before I get myself so tied up in knots. To me, that is a horrible option and would be like admitting I am useless. Don't say it. I know it doesn't make me useless, but trying to stop those feelings is like trying to stop a freight train with my bare hands.
This is just one of the stupid things that happen throughout the day that leave me angry and frustrated. It is so difficult to explain to anyone how often things like this happen throughout each day. Once I have a day containing enough situations like this, I am done. I am exhausted from the anger and frustration and so sad that this is how it is forever going to be, that it will only get worse.
Even when I have good days, like last weekend when I successfully made Valentine's cookies, until I realize how worn out I am from struggling with even a successful task.
Anyway, this has been a long and round-about way of explaining why some days I feel so crappy when there is no reason that I can identify. During days like this, I have to just keep plugging away and stay away from people so I don't lash out at them. Now, everyone who knows me well enough is going to say i is okay and that they are willing to take the chance and would just shake off the abuse if I do blow up. If only it were that simple. Can you imagine how frustrated and angry with myself I am after I do lash out at people who love me? I can't take the risk.
I think it is a pile up of these kind of things that is making me feel crappy, not a pending illness. Fortunately, it will disappear as quickly as it came on. It just takes longer!
Sunday, February 12, 2017
Making Time for Love
This week, it is Valentine's Day and way past time to defend my husband. I have spent a lot of time and energy complaining about him and his lack of understanding of FTD. He still does not have a total grasp of the disease and I truly sense how much he is trying to understand. He also has more patience with me than I should ever expect. Plus, I must keep reminding myself that it is pretty much impossible for someone without the disease to understand what an FTD life is like. On the other hand, it is often difficult for me to remember what it is like for him, to live with someone who has it. I have experienced that with family members, but it doesn't seem to translate into my own situation.
The lack of patience and impulse control that FTD brought to me fairly early in the progression of the disease causes a myriad of problems. It has put me into some pretty dangerous situations. In addition to that risk, the lack of patience and impulse controls makes it so that when I am displeased or frustrated by something, I often lash out. It is not a pretty situation as I can be downright nasty. This happens when I am stressed because I cannot do something I used to be able to do. It also happens when someone, usually my husband, does not understand the concept of "one thing at a time." It becomes worse in a noisy or crowded environment because, in those, there isn't even room for one thing. The noise and crowd fully take up the one thing. I know, by now you are probably saying "Yeah, Cindy, we get this!"
A couple weeks ago, I wrote a blog entry that included learning to try to keep it positive. I did what I said I would and posted notes in a few places that I am most likely to see them. It's simple, just a plus sign on a yellow post-it note. I have one on the wall next to where I get out of bed. I focus on that each morning and remind myself what it means. That move is finally paying off. I see one of those notes when I start losing it, I take a deep breath first. That, just in itself, is often enough to prevent a blow up. More often, it just reduces the volume and degree of the outburst.
Afterward, when we are both calm, I ask him if I can explain what happened. I explain how many things were involved in what I was doing and what that one extra thing was that set me off. A sincere apology is usually in there somewhere, most often both ways. We have set up some strategies for dealing with the overload.
I have suggested that when I am doing something and he needs my input or participation in something else, he lightly touch me on the shoulder. Then I can say "not now" or, if convenient, stop what I am doing and listen. This is working, partly because it gives him a second to question whether it is important enough to interupt what I am doing. This doesn't always work, but it is getting better. If it doesn't work, it is at least much easier to discuss it later when things are calm.
I also asked him to not stand behind me or to walk up to me from behind. FTD, along with my lifetime eye health issues, has stolen my peripheral vision. Because of this, he often startles me when I am focusing on something. It has seemed particularly dangerous when it happens while I am cooking. So he now approaches me head on or from the side. If he cannot, he will say "Behind you!" This is making a positive difference as well.
He may not always understand my outbursts, but he has always been extremely forgiving of me when I do lash out. Now, he is also more willing and open to discussing it later so he can understand. He is also better understanding for my need of a few hours of 'chill' time each evening. This is when I go into my room, in the dark and quiet when I try to read or just sit and ponder.
For the past couple months, he has been attending a local caregivers' support group. Perhaps some of the improvement is from that, just by listening and knowing others are going through the same things. I do, though, credit my new positive attitude for part of the difference. I hope it is making a positive difference for him as well.
Now, for the Valentine's Day part. It is pretty darned difficult to maintain a romantic relationship when one has the disease and the other is the caregiver. My husband has always been a hugger and a snuggler with me. Since FTD, I have not wanted that, especially after a frustrating day. I made myself to start accepting and enjoying those hugs. Now I cherish them as I did before FTD. It's amazing what a difference it makes to me and, I hope, to him as well. I still cannot accept hugs when I am struggling to deal with something. With the sensory overload that comes along with the struggles, the sense of touch is way too much right then and makes the situation worse for me. Plus, to him, at those times he must feel like, on top of lashing out, I am rejecting him and that is not healthy in a marriage.
Accepting those hugs didn't feel right to me at first, the ones in the morning were easier but, after a day of dealing with the frustration and anger than FTD brings, the evening ones were pretty tough some days. It did not take long, though, to cherish the hugs and the time it gives us to reconnect. It is important for us to stay close and remind ourselves how much we love each other if we are going to walk this journey together.
All that is left to say is, "Mike Odell, I love you!" 😍
The lack of patience and impulse control that FTD brought to me fairly early in the progression of the disease causes a myriad of problems. It has put me into some pretty dangerous situations. In addition to that risk, the lack of patience and impulse controls makes it so that when I am displeased or frustrated by something, I often lash out. It is not a pretty situation as I can be downright nasty. This happens when I am stressed because I cannot do something I used to be able to do. It also happens when someone, usually my husband, does not understand the concept of "one thing at a time." It becomes worse in a noisy or crowded environment because, in those, there isn't even room for one thing. The noise and crowd fully take up the one thing. I know, by now you are probably saying "Yeah, Cindy, we get this!"
A couple weeks ago, I wrote a blog entry that included learning to try to keep it positive. I did what I said I would and posted notes in a few places that I am most likely to see them. It's simple, just a plus sign on a yellow post-it note. I have one on the wall next to where I get out of bed. I focus on that each morning and remind myself what it means. That move is finally paying off. I see one of those notes when I start losing it, I take a deep breath first. That, just in itself, is often enough to prevent a blow up. More often, it just reduces the volume and degree of the outburst.
Afterward, when we are both calm, I ask him if I can explain what happened. I explain how many things were involved in what I was doing and what that one extra thing was that set me off. A sincere apology is usually in there somewhere, most often both ways. We have set up some strategies for dealing with the overload.
I have suggested that when I am doing something and he needs my input or participation in something else, he lightly touch me on the shoulder. Then I can say "not now" or, if convenient, stop what I am doing and listen. This is working, partly because it gives him a second to question whether it is important enough to interupt what I am doing. This doesn't always work, but it is getting better. If it doesn't work, it is at least much easier to discuss it later when things are calm.
I also asked him to not stand behind me or to walk up to me from behind. FTD, along with my lifetime eye health issues, has stolen my peripheral vision. Because of this, he often startles me when I am focusing on something. It has seemed particularly dangerous when it happens while I am cooking. So he now approaches me head on or from the side. If he cannot, he will say "Behind you!" This is making a positive difference as well.
He may not always understand my outbursts, but he has always been extremely forgiving of me when I do lash out. Now, he is also more willing and open to discussing it later so he can understand. He is also better understanding for my need of a few hours of 'chill' time each evening. This is when I go into my room, in the dark and quiet when I try to read or just sit and ponder.
For the past couple months, he has been attending a local caregivers' support group. Perhaps some of the improvement is from that, just by listening and knowing others are going through the same things. I do, though, credit my new positive attitude for part of the difference. I hope it is making a positive difference for him as well.
Now, for the Valentine's Day part. It is pretty darned difficult to maintain a romantic relationship when one has the disease and the other is the caregiver. My husband has always been a hugger and a snuggler with me. Since FTD, I have not wanted that, especially after a frustrating day. I made myself to start accepting and enjoying those hugs. Now I cherish them as I did before FTD. It's amazing what a difference it makes to me and, I hope, to him as well. I still cannot accept hugs when I am struggling to deal with something. With the sensory overload that comes along with the struggles, the sense of touch is way too much right then and makes the situation worse for me. Plus, to him, at those times he must feel like, on top of lashing out, I am rejecting him and that is not healthy in a marriage.
Accepting those hugs didn't feel right to me at first, the ones in the morning were easier but, after a day of dealing with the frustration and anger than FTD brings, the evening ones were pretty tough some days. It did not take long, though, to cherish the hugs and the time it gives us to reconnect. It is important for us to stay close and remind ourselves how much we love each other if we are going to walk this journey together.
All that is left to say is, "Mike Odell, I love you!" 😍
Saturday, February 4, 2017
Sweet and Sour Notes
Last week, I wrote about changes in my taste for different foods as well as my craving for sweets. The subject of craving sweets came up again this week in a discussion on one of the online support groups. Many of us with FTD have an intense craving for sweets and carbohydrates. This, fortunately, often comes and goes at different intensities but lately, for me, has been really intense. I say an intense craving and that is what it is, intense. It's not like "Gee, that sounds good. I'd better not though." It is strong enough that I become extremely anxious if I do not give it to it.
I do try to resist as often as I can. When I cannot resist, I try to only eat sweets that have at least some nutritional value. This can come through whole grains, nuts, peanut butter or raisins. There are more, but you get the idea. If I am going to eat too many calories, I want it to be a tiny bit good for me.
I eat granola bars in the late afternoon so that I don't start eating everything in the house while I wait for dinner. I am not here to endorse products, but one I love is Quaker Dipps. They are covered in dark chocolate and contain some whole grain. Different flavors contain nuts or peanut butter or raisins. To me, they taste like a candy bar and they trick my mind into thinking that I have eaten something really indulgent. Yes, I do know that the nutritional value is quite small, but since I am going to eat something sweet and starchy anyway, any value is better than totally empty calories. With the whole grains, it gives me a bit of a full feeling. My husband keeps several candy dishes here at home with different chocolate candies. By eating my sweets in the way I choose, I am actually able to resist all the candy dishes. I probably haven't opened one of them in 3 months.
I have a couple favorite recipes that I use to make homemade treats. I got this recipe 30 years ago when my daughter was taking a children's cooking class at the YMCA. They are so easy, yummy and have the nutritional value of the all natural peanut butter and the milk powder. Some even believe that dark chocolate provides some value. Surely all that offsets all the sugar? Just a little?
Quick Energy Pick-Ups
1 cup powdered (confectioners) sugar
1 cup all natural peanut butter
1/2 cup instant powdered milk
1 cup mini semi-sweet chocolate chips
3 Tablespoons of water
3 or 4 graham crackers, crushed
Reserve the graham crumbs and mix all other ingredients together. Roll into balls and roll in the crumbs. Refrigerate for at least 20 minutes. That's it... easy, peasy.
I have others as well, but you can find your own favorites. I choose ones that are easy enough to make for someone with FTD and with the fewest artificial ingredients.
Don't let me kid you though. I still get cravings. Yesterday, my husband bought me a bag of an Easter candy that I love, marshmallow chicks and rabbits. I don't know why I like them, they taste like those circus peanut candies that are clearly bad for you. It is 24 hours later and the entire bag is gone. I didn't eat them all though, he ate three or four of them. There's probably only 30 or 40 in the bag. He had actually bought three bags and I begged him to hide the other two. I sure hope he hid them well!
On a more sour note, this past week I heard of a few instances of individuals with FTD being disrespected. It hurts when it happens to me and infuriates me when I hear of it happening to others. I swear we should wear a badge around our necks that says "Yes, I do have dementia, I am not stupid and I CAN hear you!" I know I will be experiencing this next week when I attend a luncheon with a group of women from church. My friend who talked me into going keeps telling me to just don't let it get to me, it's their problem, not mine. Yep, that's true, but extremely difficult to do. There will be some who ignore me, some who cast sideways glances and those who mean well, but will say things like "You look great, just like you always did, are you sure you have dementia?"
I have actually offered to do a short presentation, at one of our meetings, about the differences between Alzheimer's and other dementias. That offer was never even acknowledged much less accepted. It is difficult to spread the word about FTD when people refuse to listen or to learn that it exists. That doesn't stop me though. I will continue to spread the word wherever, whenever and as often as possible. I have a bully pulpit I carry along with me!
I do try to resist as often as I can. When I cannot resist, I try to only eat sweets that have at least some nutritional value. This can come through whole grains, nuts, peanut butter or raisins. There are more, but you get the idea. If I am going to eat too many calories, I want it to be a tiny bit good for me.
I eat granola bars in the late afternoon so that I don't start eating everything in the house while I wait for dinner. I am not here to endorse products, but one I love is Quaker Dipps. They are covered in dark chocolate and contain some whole grain. Different flavors contain nuts or peanut butter or raisins. To me, they taste like a candy bar and they trick my mind into thinking that I have eaten something really indulgent. Yes, I do know that the nutritional value is quite small, but since I am going to eat something sweet and starchy anyway, any value is better than totally empty calories. With the whole grains, it gives me a bit of a full feeling. My husband keeps several candy dishes here at home with different chocolate candies. By eating my sweets in the way I choose, I am actually able to resist all the candy dishes. I probably haven't opened one of them in 3 months.
I have a couple favorite recipes that I use to make homemade treats. I got this recipe 30 years ago when my daughter was taking a children's cooking class at the YMCA. They are so easy, yummy and have the nutritional value of the all natural peanut butter and the milk powder. Some even believe that dark chocolate provides some value. Surely all that offsets all the sugar? Just a little?
Quick Energy Pick-Ups
1 cup powdered (confectioners) sugar
1 cup all natural peanut butter
1/2 cup instant powdered milk
1 cup mini semi-sweet chocolate chips
3 Tablespoons of water
3 or 4 graham crackers, crushed
Reserve the graham crumbs and mix all other ingredients together. Roll into balls and roll in the crumbs. Refrigerate for at least 20 minutes. That's it... easy, peasy.
I have others as well, but you can find your own favorites. I choose ones that are easy enough to make for someone with FTD and with the fewest artificial ingredients.
Don't let me kid you though. I still get cravings. Yesterday, my husband bought me a bag of an Easter candy that I love, marshmallow chicks and rabbits. I don't know why I like them, they taste like those circus peanut candies that are clearly bad for you. It is 24 hours later and the entire bag is gone. I didn't eat them all though, he ate three or four of them. There's probably only 30 or 40 in the bag. He had actually bought three bags and I begged him to hide the other two. I sure hope he hid them well!
On a more sour note, this past week I heard of a few instances of individuals with FTD being disrespected. It hurts when it happens to me and infuriates me when I hear of it happening to others. I swear we should wear a badge around our necks that says "Yes, I do have dementia, I am not stupid and I CAN hear you!" I know I will be experiencing this next week when I attend a luncheon with a group of women from church. My friend who talked me into going keeps telling me to just don't let it get to me, it's their problem, not mine. Yep, that's true, but extremely difficult to do. There will be some who ignore me, some who cast sideways glances and those who mean well, but will say things like "You look great, just like you always did, are you sure you have dementia?"
I have actually offered to do a short presentation, at one of our meetings, about the differences between Alzheimer's and other dementias. That offer was never even acknowledged much less accepted. It is difficult to spread the word about FTD when people refuse to listen or to learn that it exists. That doesn't stop me though. I will continue to spread the word wherever, whenever and as often as possible. I have a bully pulpit I carry along with me!
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