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Friday, November 26, 2010

FTD Thanksgiving - With A Little Help

I love the holidays, but I am always glad when they are over.

A Turkey!
The holidays are stressful for most everyone. I have always had a particularly difficult time during the holiday season. For me, with FTD, they are even more stressful today than ever before. Everything seems to be intensified during the holidays. It is a time for old traditions, and forging new ones. It is a time for family and friends. The holidays are loaded with memories. I think that is why the holidays are so important. It is this association with the memories of all of the holidays past that make them stressful, and depressing, and sad, and happy, and wonderful. It is a time when everything in the present is magnified by everything in the past.
Another Turkey!

For me with bvFTD, every holiday is now my last holiday. This Thanksgiving is my last Thanksgiving.  Those close to me think this is a depressing thought, but for me it is just reality. That is simply how it is living with FTD.

I Made This Wine!
As I was reflecting on the upcoming Thanksgiving feast, planning for weeks on cooking a huge 20 pound turkey. What kind of potatoes to make this year - note to self... NEVER add Parmesan cheese to the mashed potatoes like we did last year cuz the texture is slimy and gross - actually that was two years ago cuz last year I was very sick with Swine Flu and did not celebrate Thanksgiving at all. But I digress... Should I bake a couple pumpkin pies from scratch using real pumpkins? Yes - because I love making pumpkin pie. Nobody likes green bean casserole, but maybe a sweet corn casserole instead. When I make the ham this year I gotta remember not to use quite so many cloves, and a little more brown sugar with the ginger ale. Must have cranberry sauce, and maybe make my famous cranberry mousse. (Not this year!) Can't forget the stuffing. Keep it simple with the stuffing. I had been planning this holiday for several weeks, and looking forward to it. I love to cook, and it is rare that I get to cook a complete dinner for six, or even 8, or maybe 10 people. It is even more fun when other cooks help with the cooking. We were looking forward to adding some good southern cooking. The more the merrier! This holiday was going to be one of the best with almost everyone I love all sitting around the same table enjoying the feast we all put together. This is my last Thanksgiving.

A Beautiful Table!
Of course it being the holidays disaster struck. As usual during the holidays something goes wrong. It seems that this is the time of year when some take it upon themselves to do everything in their powers to ruin everyone else's holidays. I guess it is just a part of the season, but I never get used to it. I am always surprised how cruel and hurtful people can get during this time of year. Anyway - A few days after I had spent about $300 shopping for up to ten people for a huge Thanksgiving feast which would feature a twenty pound turkey as the centerpiece I was informed that I would only be serving three people for dinner. This big feast had been planned together for a month or more in advance. It had taken me weeks to plan for the holiday dinner. Planning is now very difficult for me. I tend to run, and rerun, and envision my plans over and over to get them firmly entrenched in my mind. After planning and preparing for weeks it is very difficult for me to change plans on short notice. I just fall apart. When plans change at the last minute my stress levels go up right through the ceiling.

Pumpkin Pie!
I am blessed after all of the planning, hurt, and regrouping, to be able to say that most of the people who I love most, and who love me, will still be sharing my table at Thanksgiving. The four of us will feast on the replacement 12 pound turkey, and still have all the trimmings. The pies are wonderful, but I am sure we will burn something, and enjoy it anyway as always. That is half the fun of the feast. I will be eating leftovers well into next summer, and sending a ton of food along with each when they leave. My food budget is blown for the month. We will still have enough food for ten people, or more!

This is my last Thanksgiving, and it will be wonderful. I will always remember who sat at my table, as I remember every Thanksgiving from years past - both the good and the bad. The memories of the songs in our hearts, the smiles, the laughter, and the wine will last forever - but I will never be the same. I will never be here again. Thanksgiving will never be the same for me. Every holiday is my last.

Every holiday is my last holiday because I have FTD. Frontotemporal Dementia is a progressive disease. There is no cure. The is no treatment. Every day I am just a little worse than I was the day before. Every day more of my brain is turning to Lime Jell-O. This Thanksgiving is the last Thanksgiving I will ever be the way I am today. Tomorrow I will not be the same. Next year I will not be the same. This is my last Thanksgiving, until the next one. By next Thanksgiving my disease will have progressed a whole year. At best I may be 90% of what I am today, maybe much less. I may still be able to cook, or help with the cooking - I may not. I already needed help to prepare the feast. Others may still not be able to notice anything is wrong with me. Maybe they will. The change is inevitable - slow and steady - or in fits and jumps. However it happens, it will happen, and next Thanksgiving will be different. This is my last Thanksgiving as I am now.

That is why I now look at every holiday as my last - because I am changing, and I will never be here as I am today. By next year I will be a different me. While others my age have many more Thanksgivings to look forward to, this is my last. Every holiday is my last. I cherish the present more than ever before, and am happy to share my Thanksgiving with the ones I love the most. I have much to be thankful for this year.

Oh, and the feast was feasted upon, and merry merriment was made, and all were stuffed full of turkey with all the trimmings. We almost burned the rolls, but thanks to a last minute save when my son remembered they were still in the over not this year. It is a tradition to burn the rolls. My youngest son and I had a "Ham Throwdown".  His Honey-Mustard Ham recipe vs. my Ginger-Ale Brown Sugar & Clove Ham recipe. Of course I won, but it was REALLY close. Both are delicious! We may have to try combining the two recipes and see how it tastes.

Real Friends Do The Dishes!
Everything came out great. Great food - Great children - and Great Friends! Some friends stopped by after dinner just for a visit. Kroozer got along well with Samantha, my surrogate dog. We played some Guitar Hero, and Mario. I do OK with Guitar Hero, but my symptoms make the racing game much more difficult, but it is still fun. We stayed up late watching a couple movies. It was a wonderful last Thanksgiving ...until the next one. I am thankful.

Just a note about Kroozer. He was having a wonderful time once he got used to all the extra commotion in "his" house. He was spoiled by everyone. He got fed so many little treats from the feast that he finally puked. Now you know it is a really great Thanksgiving when the skunk barfs! Another new tradition has been forged.

Today is now Black Friday. The dishes are all done. The house is quiet.  Kroozer is checking to make sure nothing is missing. I survived yesterday just fine, and though I was aware several times of my FTD symptoms they were not totally debilitating. Forgetting where I set something, stress, and getting steps out of order were the most noticeable to me. Of course dinner, and the whole holiday as mentioned above, took much longer to plan, and I had to hibernate a few days to totally re-plan it at the last minute. My kitchen was delightfully chaotic. My boys, our friend, and I all worked like a well-oiled machine. My boys are both very good cooks, and know their way around a kitchen. I put the turkey in the oven, and started the mashed potatoes while things were still quiet. I made the pumpkin pies a couple days before. After I took the turkey out I was feeling a little overwhelmed. It is difficult for me to "keep up" when things get moving really fast. I felt a little panicked. I sat down, and watched as my kids took over. They whipped out the mashed potatoes, stuffing, corn casserole, and the ham with no trouble at all. They tasted, tweaked, and even sautéed extra celery and leeks for the stuffing, and made a quick run to the store for sour cream and Cool Whip. Our friend was right in there helping to slice, dice, and supervise. I could never have done it without them. Some days are better than others. It was a good day. And again, I am thankful.

I think I will hibernate for a few days to recover...

Comments are welcome.

Friday, November 19, 2010

AFTD Newsletter - Check Out Page 10

The following is a complete copy of the email sent from AFTD announcing the latest issue of their newsletter. What makes this one of special interest on this blog is that you will see my smiling face at the bottom of page 10. Explore the AFTD website to learn more about FTD, and feel free to donate if you want to. This is the only organization expressly devoted to FTD, and is one of the most helpful and informative around. A special "Thank You!" to Susan for allowing me to use some information from the AFTD website, and to Chuck for his encouragement in posting my story on their website. Check it out at the links in the following post.

Dear Friends,

There is a lot happening here at the Association and in the field of frontotemporal dementia. To catch up on some of the latest research, programs and events click this link to read our Fall newsletter. Features include a profile of AFTD Board Member Sylvia Mackey, wife and caregiver of NFL Hall of Famer John Mackey, and an interview with award-winning filmmaker Joseph Becker on his experience documenting FTD and its impact on families. Also, be sure to read What's So Funny?, a terrific article by Comedy Central's Nicole Savini, who says laughter can help you cope with FTD and make you a better caregiver! It's guaranteed to make you smile and might even make you laugh out loud!


AFTD's various programs and services are made possible by the generous contributions of friends like you who are helping change the lives of people affected by FTD. Lives of people like Bill and Sue Bishop and their son, Brad, who has FTD (read their story in the next link). Please consider giving generously to the 2010 annual appeal so that AFTD can continue helping people like the Bishop family, while creating a more hopeful tomorrow.

To make your gift online, go to Donate Now! at www.ftd-picks.org
On behalf of all of us at AFTD, best wishes for a very Happy Thanksgiving!

Susan L-J Dickinson, MS
Executive Director

Wednesday, November 17, 2010

My Frontotemporal Dementia And Alternative (Herbal) Medicine - Quack! Quack!

Woody Allen said: "My brain? That's my second favorite organ."

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.
Medical Disclaimer

There are no approved drugs at this time for FTD - Frontotemporal Dementia - Pick's Disease. There are several drugs approved for Alzheimer's Dementia which are widely prescribed for patients with FTD and bvFTD.

Four drugs have shown at least modest benefit for Alzheimer's disease or non-Alzheimer's dementia: Reminyl, Exelon, Aricept, and Cognex. These medications usually produce a modest improvement in mild to moderate Alzheimer's disease by increasing the duration of action of acetylcholine. However, they can cause sometimes severe side effects due to the exaggeration of acetylcholine's action in other parts of the body. They may be of some benefit, or not. Research results, when there are any available, are often conflicting. Every case of FTD is different.

So, what about non-traditional medicine? What about dietary supplements and herbs? Spices? Mushrooms? Vitamins? In my opinion since nobody seems to know much for certain about treatments for FTD, as long as it isn't doing any harm, it is worth a try. All there is to lose is a few bucks to put in the pocket of a quack supplement company. All there is to gain is a slowing of progression, or easing of symptoms. Is it worth the gamble? For me, I think it is. But caution is in order.

Whether the herbs are effective as claimed or not, they do interact with medications and each other. Uninformed multiple herb use can lead to unexpected side effects, toxicity, and even death. The greater the number of medications taken, the greater the number of possible interactions. I checked with my doctors first, and plan to keep them informed on what I am taking just to be safe.

So, I did some research. For me, with FTD, that means a few weeks of research.  Thinking is hard. This whole idea started when a friend sent me an email about some weird mushroom and dementia. I thought she was crazy. Come on! A mushroom? Well - I looked it up on the internet - and we all know that if it is on the internet it must be true! That is how this all started.

The first thing I wanted to do was to try and find some actual scientific research studies on the effectiveness of specific herbal supplements on dementia. I also wanted to see studies debunking supplement claims for treating dementia. Anything written by a company that sells the stuff doesn't count for obvious reasons. Virtually all of the research deals with Alzheimer's Disease, so making the jump to say it benefits Frontotemporal Dementia is a big assumption. That is the assumption I am going to make based on the wide practice of prescribing Alzheimer's drugs for FTD. I realize that the chemical pathways of the diseases are not exactly the same, but for now that is the best I have to go on.

One of my assumptions is that if FTD is based on an atrophy of the Frontal and Temporal Lobes of the brain because of a build-up of Tau Proteins anything which causes brain cells in general to increase in number is going to be on the right track. In my case my MRI has shown severe brain atrophy so I am very interested in increasing brain volume. Bigger is better! I figure if I can increase the number of brain cells, my brain will figure out how to hook them up to work where it needs them most. Likewise anything which helps to prevent brain cells from dying is also on the right track. That is my basic criteria. If there is something which may help alleviate the acute symptoms by helping with cognition or memory that would also be a good fit for me.

I checked on Fish Oil, and found that there was no evidence that it was beneficial in any way. I find it disgusting, so I was very pleased. Omega 3 Fatty Acids are available from other sources, which do not come back to haunt you. As a side note (according to Dr. Oz!) if you keep it in the refrigerator it helps because it does spoil, and that is when it really causes those bad fishy-belches. Yuck!

There has been a lot of controversy of late on the effectiveness of Ginkgo Biloba (Which if nothing else is fun to say!). In my personal opinion, the jury is still out. The study which showed it did not have a significant effect was on patients so old and advanced I am amazed they survived to the end of the trial. At the very least the research is "conflicting". The other is Phosphatidylserine. I had never even heard of this one. Following is a widely quoted synopsis of the effects of these two herbal supplement natural treatments on dementia.

I found the following, and some other good info at the Health Library. . (I took the liberty of removing the footnotes.)

There are two natural treatments for Alzheimer's disease with significant scientific evidence behind them: ginkgo and phosphatidylserine. Huperzine A and vinpocetine, while more like drugs than natural remedies, may also improve mental function in people with dementia. Acetyl-L-carnitine was once considered a promising option for this condition as well, but current evidence suggests that it does not work.

Ginkgo - Ginko... whatever!

The most well-established herbal treatment for Alzheimer's disease is the herb Ginkgo Biloba. Numerous high quality double-blind, placebo-controlled studies indicate that ginkgo is effective for treating various forms of dementia.  One of the largest was a 1997 US trial that enrolled more than 300 participants with Alzheimer’s disease or non-Alzheimer’s dementia.  Participants were given either 40 mg of Ginkgo Biloba extract or placebo 3 times daily for a period of 52 weeks. The results showed significant but not entirely consistent improvements in the treated group.

Another study published in 2007 followed 400 people for 22 weeks, and used twice the dose of ginkgo empl
oyed in the study just described. The results of this trial indicated that ginkgo was significantly superior to placebo. The areas in which ginkgo showed the most marked superiority as compared to placebo included, “apathy/indifference, anxiety, irritability/lability, depression/dysphoria and sleep/nighttime behavior.”

On the other hand, one fairly large study of ginkgo extract drew headlines for concluding that ginkgo is ineffective.  This 24-week, double-blind, placebo-controlled study of 214 participants with either mild to moderate dementia or ordinary age-associated memory loss found no effect with ginkgo extract at a dose of 240 mg or 160 mg daily. However, this study has been sharply criticized for a number of serious flaws in its design.  But in another community-based study among 176 elderly subjects with early-stage dementia, researchers found no beneficial effect for 120 mg of ginko extract given daily for 6 months.

The ability of ginko to prevent or delay a decline in cognitive function is less clear. In a placebo-controlled trial of 118 cognitively intact adults 85 years or older, ginkgo extract seemed to effectively slow the decline in memory function over 42 months. The researchers also reported a higher incidence of stroke in the group that took ginko, a finding that requires more investigation.

In a 2009 review of 36 randomized trials involving 4,423 patients with declining mental function (including dementia), researchers concluded ginkgo appears safe but there is inconsistent evidence regarding whether it works.

Search Amazon.com for ginko biloba

 OK, that is a start. Here is another which I think may be promising, and is widely available and has a good safety record.

Melatonin. I found a whole bunch of studies which suggest that Melatonin may stimulate the growth of brain cells, and help protect them from dying. Since it also helps you get a good nights sleep I figure it is worth a try. If it doesn't have any adverse side effects it falls into the "Can't hurt" category.

 Search Amazon.com for Melatonin

Phosphatidylserine (PS)

Phosphatidylserine (PS) is one of the many substances involved in the structure and maintenance of cell membranes. Double-blind studies involving a total of more than 1,000 people suggest that phosphatidylserine is an effective treatment for Alzheimer's disease and other forms of dementia.

The largest of these studies followed 494 elderly subjects in northeastern Italy over a course of 6 months. All suffered from moderate to severe mental decline, as measured by standard tests. Treatment consisted of 300 mg daily of either PS or placebo. The group that took PS did significantly better in both behavior and mental function than the placebo group. Symptoms of depression also improved.

These results agree with those of numerous smaller double-blind studies involving a total of more than 500 people with Alzheimer's and other types of age-related dementia.

I had never even heard of this chemical, so I looked it up on WebMD. The above studies were all conducted on the chemical derived from cow brains, so since the form now available has changed it is possible the effects have also. There is an irony when a chemical derived from a cabbage may help with brain cell structure - I'm just sayin'...

Anyway - according to WebMD:
The body can make phosphatidylserine, but gets most of what it needs from foods. Phosphatidylserine supplements were once made from cow brains, but now are commonly manufactured from cabbage or soy. The switch was triggered by a concern that products made from animal sources might cause infections such as mad cow disease.

Phosphatidylserine is used for Alzheimer's disease, age-related decline in mental function, improving thinking skills in young people, attention deficit-hyperactivity disorder (ADHD), depression, preventing exercise-induced stress, and improving athletic performance.

There is currently no standard recommended phosphatidylserine dosage. In studies, doses of 100 mg three times daily have been used to treat Alzheimer's disease, dementia, and age-related declines in cognitive function. Studies have also used doses of 200 to 300 mg daily for ADHD treatment. However, it is not known whether these are the most effective and safe phosphatidylserine doses.

Phosphatidylserine sounds very promising because it specifically targets the cell structure of the brain. It is the collapse of the Tau Protein in the cell structure that is believed to be the major cause of Frontotemporal Dementia. At least that is what I have read if I am understanding it correctly. It seems to be a different pathway from the tangles associated with Alzheimer's Disease.

 Search Amazon.com for Phosphatidylserine

And lastly, the big one. The one that started it all. The one which sounds the most ridiculous. Even more ridiculous than a cabbage-head.

Lion's Mane Mushroom

 Yup! A mushroom. Not just any mushroom, but a scraggly thing that looks more like a pile of old shriveled up spaghetti than a 'shroom. My biggest reservation with Lion's Mane is that almost all of the research is done by a single scientist in Japan (Kawagishi, H.) - who also just happens to be the one who sells an extract and methodology for producing it. That said, there is also some replication of his research, and it is so strong that if it is actually sound it is worth a shot. Lion's Mane seems to promote the regeneration of brain cells by providing a precursor of the neural growth hormone which can pass through the blood-brain barrier. Since there are like zero side-effects on this one - I am in. At least it is worth a try, and it is now widely available at a reasonable price.

 Search Amazon.com for Lion's Mane

All of the other herbal remedies I have researched seem to me to be based on anecdotal evidence, sales propaganda, or have no research to support the claims. There are a few which fall into the category of spices such as Turmeric that I may add to my cooking when convenient, but nothing that I think will have any real benefits. I already use Sage, Olive Oil, Hot Peppers, and Garlic on a regular basis, and am working on using more Curry, so I think I have that category well covered. Wine is good, too!

I made my monthly visit to my neurologist this morning. Since I was there I asked him if he thought there was any danger in trying any supplements. His first answer was that all he recommended was a general daily multivitamin. When I explained I was not talking about vitamins, but some herbal remedies, he said it was OK to try them after we discussed exactly what I was considering. I was surprised he was not more of an advocate because of his Egyptian heritage, but he, like me, is a skeptic. My main concern was for some interaction with the drugs I am taking, and from that perspective he basically said I was OK to try some alternative treatments. Melatonin was the one I was most concerned about because of its interactions with choline, but he said I could give it a try.

I estimate the total drug-store cost of all of these supplements to be around $35 a month without Phosphatidylserine, and twice that with it included. Amazon prices are much better for the exact same products. That is a pretty hefty expense... unless they have the benefits attributed to them. In that case it would be a bargain at any price.

I am not planning on starting to take all of these right away - just the Melatonin and Ginkgo Biloba because they happen to be on sale right now, and have a good track record. I am going to wait, and think it over. I need some additional input from some non-demented minds. If I do decide to try them I will probably start them one at a time just to be cautious. All of these have published double-blind research studies of at least some sort to show that they may have an effect - though some of the methodology/analysis is questionable. That is promising - better than what is available for most vitamins.

Quack! Quack! ...Quack?

For right now I am still evaluating the benefits - if any - of taking Aricept. As of two days ago I increased my dose from 5 to 10 mg. It is too early to tell for sure, but the early results have been very positive once I got past the sometimes frustrating side-effects. But that is the subject of a future post.

Comments are welcome.

Thursday, November 11, 2010

Apple Cider - The Hard Way

Accidents happen.

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.

But - Just because I have FTD doesn't mean I can't still have some fun. Every day isn't all bad. Some days are better than others.

It is Fall in Northwestern Ohio. The air is clear and crisp, leaves crunch underfoot, and it is the time for apples, and for Apple Cider. I was going past the local apple orchard, and decided to stop in and get a gallon of fresh cider. It looked so good I purchased 2 jugs of it.

I stuck one in the refrigerator, and left the other on the kitchen counter because there was no room for it in the fridge - and that is how it all started.

The cider from the fridge was sweet, cold and delicious.

Cider & bubbler.
oops! After 2 days the cider on the kitchen counter was a little foamy. By the third day I had to loosen the cap to vent the pressure. I left the cap loose, and let it "work" for a few more days without hardly tasting it at all. It hardened up nicely, and didn't last very long. So much for the first gallon.

I have not made hard cider in about 40 years. I had a next door neighbor way back when I was in High School who had a big wooden cask in his garage. Every Fall that cask was bubbling away "working". That is where I learned how to make Hard Cider, and how I learned to carry it a little farther to make a wonderful Apple Wine. That is also when I learned to enjoy drinking it while sitting around swapping hunting stories and the like.

Carboy with last batch.
I had made a quick fermenting bubbler with a short piece of tubing, and a jar of water. I decided to actually purchase a couple commercial bubblers from the local wine-making shop. They are just easier to use, take up less space, and don't make a mess. When I was at the wine-making store I also purchased some champagne yeast which is the type recommended for making Apple Wine from Apple Cider. I got 5 gallons of Apple Cider from the orchard, and dumped it into a 5 gallon plastic water bottle with about 3 pounds of light brown sugar. I just followed the normal steps for making wine.

After about a week it stopped bubbling, so I racked it off back into the original gallon jugs the cider came in. Everyone wanted a taste, and maybe a few glasses. Most of it was gone before it even had time to completely clear and settle. Since most of 5 gallons evaporated so quickly I decided to make a little more, and to make it just a tad stronger by adding about 8 pounds of light and dark brown sugar. Search Amazon.com for Wine Making equipment

Racked off to settle and clear
This batch came out a little drier, and has a warm brownish color from the molasses in the sugar. It came out so well, that I decided to make another batch while the fresh cider was still available.

For this last batch I have added 12 pounds of sugar, and I am aiming for about 20% alcohol. This is about as high as I can expect for the champagne yeast I am using. Just for fun I also added a little ginger, clove, and cinnamon. This last batch is happily bubbling away as I write this. (Update 1: This came out too sweet for me, but VERY strong)

Update 2:
Final Best Apple Wine Recipe of 2010 (5 gallons)
5 Gallons Apple Cider with no preservatives
4 pounds Light Brown Sugar
4 Cups White Sugar
Yeast Nutrient + Pectin Enzyme + EC1118 Yeast per package instructions
Ferment... Rack as necessary... Finish, and Bottle
Back-sweeten with 2 ounces Honey + 8 Ounces Frozen Apple Juice Concentrate/Gallon for an off-dry wine which reminds me of the best Rieslings.

Other than maybe the fact that I am making apple wine in the first place  (15 gallons!) I have not noticed any major problems with my bvFTD. The process is so simple, and really can't be messed up too badly. I did do some reading on the Internet to confirm what steps I needed to take, and then just followed the directions. I re-read the directions many times, and finally found a calculator on a web page to figure out the math for how much sugar to add. Most of it was using simple kitchen skills like mixing the sugar into some cider to dissolve it before adding it to the mix. I was patient, and just took my time working at my own pace. It was fun.

It all started out as an accident. Really! Accidental Apple Wine. It sure is better than Lime Jell-O!

This first batch tastes great!
So... what's next?


Comments are welcome.

Just a quick note: Apple Cider, or just plain Cider, in the United States is non-alcoholic cloudy-looking apple juice. Hard Cider is its naturally fermented alcoholic cousin. Apple Wine has a higher alcohol content because of the special yeasts used. In most of the rest of the world the word Cider means Hard Cider with an alcohol content about like beer.

Friday, November 5, 2010

Bad Days - Darkness

 Bad days. Searching for a light in the darkness surrounding a collage of dim images.

I see a few isolated lights and dim images of memory.

I have not written much about having bad days. Dark days! I frequently say that some days are better than others. Some days I have Cotton In My Lime Jell-O. Sometimes I write about having some especially good days. Bad days are another matter. I noticed that I do not write about them very often.

It isn't that bad days do not occur, or that I do not want to write about my bad days. Bad days are a part of my life. The problem is that when I have what I consider a really bad day I usually don't remember much of it afterward. Here is an example, but I truly do not remember a whole lot of details.

In this particular instance I believe that this series of what I consider really bad days is linked to an interaction with my medications and an antihistamine. I can have a bad day, or a few, because of stress, or for no apparent reason at all. This past week was extreme.

Monday started out normal enough. I had a routine appointment to see my neurologist. Everything went well, and I stopped by the drug store to drop off my prescriptions. When I went back to pick them up I realized I must have been a little confused, and I had only refilled half of them. It was not a problem, and I just told them what I still needed to be refilled, and that I would pick them up the next day. This in itself is not all that unusual. I was just a little confused, and out of sequence.

That is almost all I can remember until Friday. Missing time! Lots of Missing time.

I did not pick up my prescriptions on Tuesday. I hibernated. I remember I had company for dinner on Tuesday. I do not remember anything else about it. I have no memory of what we ate, or where. I am told we had a nice dinner, and watched some television.

All I remember about Wednesday is that I phoned a friend late in the afternoon to say I would not be attending a dinner we had planned because I was having a really bad week. I was well aware that something was wrong, and just wanted to stay at home. Other than that I did not talk to anyone on the phone. I did not text, or even email. I was a hermit. I picked up my prescriptions, and did a little grocery shopping, but I have no memory of doing either. I know I did because my prescriptions are here along with the groceries.

On Thursday I napped, and watched television. Mostly I slept or napped for about seventeen hours. I don't remember much.

On Friday I started to feel better. I had figured out it was the medication, and had stopped taking the antihistamines. By Saturday I was back to what passes for "normal". (I am not sure if "normal" is the right word to describe someone with Frontotemporal Dementia - bvFTD - Pick's Disease - FTD... actually I mean "normal for me". I have never been or wanted to be normal. That would be mundane.)

Over a period of four days that is about all I remember. When I try to look back on this period of time all I see is a blackness with a few isolated memories. There is nothing much there. There are a few little glimpses of things, but nothing of any substance. It is all a blank. Missing time.

Here are some things I have put together afterward. On Tuesday when my friend arrived for dinner, the first words out of her mouth were, "You're having a bad day, aren't you?" This was after just seeing me for about 10 seconds. This was before we had even said anything more than "hello". When I asked, she could not pinpoint what it was that made her so certain something was wrong. Something in my posture? Intuition?

When talking about dinner Tuesday evening in retrospect, my friend said I seemed just fine. I did not seem confused, and I acted normally... well, now you know what I mean - normal for me. I hear that a lot. I have also read comments from others with Ftrontotemporal Dementia or their caregivers that neighbors and acquaintances do not notice anything is wrong - sometimes even when the person requires constant care. I think this may be the subject of a future post as it happens to me frequently.

Even though I was having a really bad few days, I still managed to do what I needed to do. My routines, lists, and reminders worked as they are meant to. I fed Kroozer, and he is a fat and happy lil skunk. I cooked my meals, and kept the house reasonably clean. I did everything I needed to do. The problem is that I do not remember much about doing any of it.

My method of coping was to isolate myself, and eliminate as much stress as I could. I did not answer my phone, and I did not make any phone calls - not even to family and friends closest to me. I did not write, or answer any emails. I only went out of the house when I absolutely needed to. I didn't go anywhere, see anyone, talk to anyone, or do much of anything. I simply cut out all of the extras, and I concentrated on the essentials. Part of this was not by choice. It was nearly impossible to overcome the resistance to making a phone call, or going out. It worried my friends, but it worked for me. I got through the bad days as best I know how.

The last vestige of the dark days - I hope. Yesterday I was doing my laundry according to my schedule. When I opened the washer, there was a load of washed clothes still in it. I could tell from what was there that I had washed them on Monday or Tuesday. I have no memory whatsoever of washing them. None!

Some days are better than others. I have good days, and I have bad days. A few days last week were not so very good. So far today seems to be a good day. I will take the good days whenever I can get them.

Comments are welcome.