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Tuesday, December 24, 2013

Dementia And Coping With Holiday Stress - Or Not!

Gracie sound asleep with a few of her snowmen.
The stress of the Holidays, and I am talking about the time-frame from Thanksgiving to my Birthday on January 17th specifically, is difficult for almost everyone. There are lots of memories, lots of new stuff to do, and lots of general holiday crap piled on. When you have any form of dementia it is even more difficult because many of the coping mechanisms have been stripped away. Comfortable routines get all disrupted. For me, this Holiday Season is a little bit different.

Since I have been living with my fiancee, Cindy, things have been easier in many ways. But, since she is always there beside me to make things easier, I can do more, and get farther into the stress-related holiday arrangements before I have an FTD-related meltdown. Of course, since she is always there beside me, she gets the privilege of bearing the brunt of my meltdowns. Most of the time she is able to cope pretty well. Sometimes better than others. Here is an analogy: I own a Jeep named Ruby. We can go further and into worse stuff than anyone else before we get stuck. Ummmm ...when we do get stuck we are in deeper and further than anyone else. Get the idea? Holiday-helper stress!

Holiday stress is never just confined to the usual holiday stuff. I needed to change Neurologists, and it happened right after Thanksgiving. My previous neurologist of 3 years plus was having some odd billing practices. I hesitate to say it was insurance fraud because my insurance company was apparently never billed, but I was charged a co-pay every 30 days to get a prescription - a prescription which my GP now does every month at no charge, as would my new neurologist. That adds up to over $400 a year! I did this for 3 years. That is around $1200. There were several other instances of odd charges including $70 to answer 6 yes/no insurance questions. I was totally ripped-off. He be gone! Thank you Dr Mohomad for all of your kind $ervice$!

So, my new neurologist is very intelligent, and seems pretty competent, but is an asshole. He doesn't listen! He is worse than I am, and he doesn't have FTD. He talks fast, gets me confused, and just keeps going. I am sure he was doing some of that intentionally to evaluate my reaction. I did not cope with it very well. I don't remember much about that appointment, and I was there for over an hour. He would say I have amnesia because I didn't remember. He is one of those who reads the literature, and thinks there is a standard profile for this disease, and he knows it all. Dr. Moore actually said that after 4 years I shouldn't have as much insight into my disease as I seem to have. That is what the books say, but if anyone is paying attention there are several of us out here who are still capable of blogging about our disease many years after our diagnosis. Our diagnosis is not incorrect. Every case of Frontotemporal Degeneration is unique. Every case progresses at its own pace, not according to any book. FTD hasn't read that book! He did order a couple additional tests that my previous neurologist didn't have done, and I will get around to them after the holidays. Not sure yet if I am going to keep him, or go shopping again. He is on double-secret probation.
Yeah! Changing neurologists was stressful!

Thanksgiving itself was pretty easy. We went to Cindy's brother's house for Thanksgiving dinner. We did that last year, and it was again a great time. We took Gracie. Well, her brother, Mel, has a German Shepard named Angel. Angel has been through Guard/Attack dog training. Gracie and Angel get along pretty well, and play together just fine. They got along well at Thanksgiving for several hours. After most everyone had left, and things had quieted down, Angel decided to challenge Gracie for Mel's attention. She actually stared straight at Gracie with full eye contact. For most dogs this would be OK, but Gracie is an Akita. NO challenge will go unaccepted. It is the Akita way. I had to pull her off of Angel before she did any real damage. There was much biting and growling. Nobody seemed to really care except me. No damage was done, and the stupid dogs are still best friends as long as Gracie is boss. Oh well! It just added to my accumulating holiday stress.

All mixed in with all of the rest of the holiday preparations, I have had a half dozen or so really bad days, and a few of them were back-to-back. These are the days I rarely write about on this blog because when I am having one, I cannot write anything, and when they are past I can barely remember anything about them. The difference is that now Cindy recognizes when I am having difficulty, and literally takes me by the hand, and helps me through it. With her help, instead of just locking the doors and waiting for it to pass, I can get something dome. Maybe not all that well, but at least I am out there in the world instead of of locked up inside my house. Well, a few really bad days definitely have added to my overall stress for the holidays, but it is better this year than in the past because I am not facing those days alone.

Must have been when I was recovering from one of those really bad days because ...Then, in a moment of weakness, I agreed to host a Christmas Party/Engagement Party/Meet Gracie Party on Saturday December 14th. Cindy did most of the work preparing for the party. For a couple weeks we cooked, and made cookies, and candy, and all kinds of snacks. We totally cleaned and re-arranged the house to accommodate a half dozed crock-pots, and a bazillion Christmas decorations - at least 500 of which are some kind of snowman. Cindy kinda has a thing for snowmen ; )

Here in Fulton County, Ohio, it snowed a little over 9 inches on Saturday December 14th. By 2:00 in the afternoon most everyone had called to say that they were unable to come due to the weather. In all fairness everyone should be safe, and only drive if they feel comfortable to do so. But my FTD side says, "Screw that!". The roads were plowed from 5:00 AM onwards about every half hour, and it was only a little snow. My friends from clear across Toledo wanted to come anyways, but I said "No", because I had a headache, and Cindy was tired, and we had already cancelled. I went to bed, and took a nap. Cindy was putting things away, freezing what she could, and running around in her robe.

It was a little after dark when the doorbell rang. Our friends from Rochester New York had driven through the snowstorm to come visit us. They actually drove through Canada, so it was even worse than usual. They were less than a half hour late for the party! Well ...since they had come through Canada, and most people turn their cell phones off when in Canada to avoid the ridiculous roaming charges, they didn't get the message that the party was cancelled - as if it would have mattered by then.

As it worked out, it was all for the best. We got to spend the evening with our friends without the distraction of having to play host and hostess at a party. We had a nice breakfast out on Sunday before they left. I only wish they could have stayed longer!

But overall the entire party weekend, and the weeks leading up to it, just added to my accumulating level of holiday stress. When finances are as tight as mine are, even a frugal-party where we make just about everything from scratch ourselves has dire consequences. So, add to all of the other holiday stress a ton of financial pressure. Of course Christmas shopping isn't free either. Just more stress added to the pile.

Oh, I forgot to mention that when I pulled Gracie off of Angel on Thanksgiving, I pulled my Achilles tendon. I was totally unable to walk without the aid of crutches for a little over 2 weeks. This was the time when we were getting ready for the party. Just when my heel was starting to recover, I caught a crutch on a box of ornaments, and fell headlong into a pile of decorations. Luckily a nice sharp pointy candelabra broke my fall. Of course I re-injured my tendon, so it took twice as long to recover. I guess I was lucky to get away with a pulled tendon, and a few cuts and bruises. The constant pain, and being unable to walk, and probably the painkillers, added even more stress to the holiday stress pile.

How do I cope with all this additional stress piling up? (Not very well!) I am not going to give any crappy advice because there is nothing that really works for everyone. If I could say anything it is to, "Just get by the best you can, and do whatever you need to to get through the difficult days." Not much help for anyone, me included. First off, holiday stress seems to magnify all of my symptoms, and really points out just how debilitating frontotemporal degeneration can be. I just take a day, or part of a day, off now and then. Close the doors, do not answer the phone, ignore the emails, and take a nap, or watch an old movie. That seems to help, at least some. Sometimes all it takes is a hug, or a cold nose nudging me to get going again. Gracie gives great hugs, and Cindy's nose is always cold, or is that the other way around? Basically I just keep slogging through it trudging uphill through the fog that bvFTD creates until I get past it. I keep telling myself that January is just around the corner with a whole new year, and a whole new set of challenges.

So, that brings us to today. It is Christmas Eve-Eve. December 23rd is when I started writing this, and I will be finishing it up on Christmas Eve. We will have a house-full of happy family here late on Christmas Eve, and Christmas day. Four adults who are still children at heart around a Christmas tree laughing and opening presents, with the addition of 2 dogs. (My youngest son will be here in January for our Birthdays if all goes as planned.)  All of the shopping is done, stocking are stuffed, and the presents are all wrapped and under the tree. Well, actually we have 6 Christmas trees in the house this year, but only 2 of them have presents underneath.  I am excited, and looking forward to it. The best part of it all is getting to spend time with my family. I love the Holidays, and especially Christmas!

The Saturday after Christmas is the re-schedule of the Christmas/Engagement/Meet Gracie Party. Not much work to do in preparation because everything is still frozen from the 14th. I probably will not be making any fresh pumpkin pies because the pumpkins didn't keep well this year. In the past I have had pumpkins on the 4th of July the following year. This year they have become moldy, and developed rotted spots already. I do have one pie left for the party. I make a molasses pumpkin pie from scratch that is tasty and smooth. The trick is to run it through the blender before pouring the custard mix into the pie shells. I have had pumpkin pie from scratch that were stringy with bits of pumpkin, and did not care for that texture.  I sure hope it doesn't decide to snow another foot that day!

Merry Christmas!

Some days are better than others, but Christmas is wonderful!

Monday, November 18, 2013

Gracie Is A Big Girl! Pets and Dementia.

It has been about 7 years since I have had a dog. Logan was a rescue from the Toledo Humane Society, a mixed breed Shepard and something. He was a wonderful friend and member of our family for 12 years. For the past 3 years I lived with a pet skunk named Kroozer. Kroozer died suddenly on November 5th. It appeared to be a heart attack or stroke. He was fine, and then he wasn't.

My son came for a visit with his girlfriend Kristen, and their dog Fynn. Fynn is an all white Shiba Inu who weighs about 22 pounds. He is cute, smart, and full of puppy-energy. Having him around for a few days made me miss having a dog for the first time in many years. Having both my sons visit was the best time ever, but that is another story cuz right now I am talking about dogs.

My fiancee, Cindy, and I started searching for a dog to adopt. We knew we wanted a medium-sized dog, but were not too particular about the breed. We figured about 50 pounds or so would be good. We looked at a few mixed breeds, and were seriously considering an Australian Shepard. Then we started looking at other breeds, and mixes again.

Cindy found a listing online, and showed me the picture. It was a black dog with white trim, and it looked like maybe a Border Collie mix. A little smaller than what I was thinking. HAR! Well, over the next several days every time Cindy logged on to dog-search this same picture showed up. Finally I took a closer look, and read the description. This is what it said:

About Dori
The original small-dog picture of her.

This beautiful girl is Dori. She was rescued from a shelter in Indianapolis where she was originally found as a stray. Dori is a big girl of around 80 pounds and is believed to be a Newfoundland/Akita mix. She is estimated to be between 2-3 years old and acts like a big puppy. Dori does OK with most dogs but tends to get too rough and doesn't really know that she's hurting another dog, so she may do best in a home as an only pet.  Dori is hearing impaired, though not entirely deaf. It doesn't slow her down one bit though. She has learned some hand signals and would do great with some training in sign language. Dori is spayed, up to date on vaccinations, heartworm tested negative and microchipped. Her adoption fee is $200.

Eighty pounds! OK. Maybe she isn't a Border Collie Mix. Once I actually read the above description I understood. For some reason we decided to take a drive to Mishawauka Indiana on Saturday morning where "Dori" was going to be at an adoption event at a PetSmart Store. We had no real expectations, and both figured there would be some reason we would not be adopting this dog.

We walked into the store, and easily located "Dori". She was the biggest black dog around. Cindy walked up,
and stuck her hand right through the bars of the crate, exactly like you should never do with a strange dog. This huge black dog gently grabbed her fingers, and licked her hand. Diane, the very sweet volunteer in attendance, panicked a little until she saw the reaction. It was love at first bite.
Gracie is a big girl!

We spent about 90 minutes walking "Dori" around the store, and getting to know her, and see some of her personality. It was apparent that she was a big, deaf, loving puppy with little training, and few manners. Apparently that is exactly what we were looking for because at 3:30 on Saturday afternoon after a couple uneventful hours in the car we arrived home with her. We discussed a new name for her. Dori had been her kennel-name, but in keeping with family tradition she needed a new name to go with her new home. Since she was deaf, she did not respond to her name anyway, so it was purely for our convenience.

The first thing we found out was that she did not know how to walk up or down steps very well. I had to
show her how to get up the 5 steps leading to the deck. In her defence, a few other dogs have had difficulty with those steps because they do not have backs to them, and you can see right through. A little pushing and tugging later, and she was in the house. She explored the house, and decided she was home.

Gracie, and her bestest buddy - Fynn.
She tripped over the throw rugs. She walked into an end table. She slipped every time she stepped on the wood floor. She bumped into Cindy. She bumped into the coffee table. She bumped into me. When she finally tripped over the pattern on the rug she got her name. Obviously she was "Grace". Formally "Gracie Allen" because she is smart, funny, and has a stubborn streak all wrapped up with love. We call her "Gracie", and so should you. She can't hear you, but she is starting to read lips.

A few corrections: We took Gracie to a vet for a first check-up, and she weighed in at a healthy 106 pounds! Har! Remember when I thought she was too small? She appears to be a pure-bred long-coat Akita, not a Newfie-mix as at first thought. She appears to be almost totally deaf. Her eyesight is OK, but she is so clumsy you would think she is blind the way she stumbles around walking into things. She is getting better. We, and the vet, think she is closer to 2 years old. Gracie is missing her one upper right front canine tooth. Fangless! She does not bark with a lisp. In fact, she rarely barks at all, but does growl and talk loudly when playing.

It has been about a month since Gracie rescued us. She is already a full member of the family.  She has learned some sign language. She already understands her name, come, sit, outside, and is working on down and stay. She is begrudgingly learning to walk on a short leash without pulling. She is fine on a long leash. Her favorite sign is Scoobie-snack! Our throw rugs are never where they belong. Ever see a hundred-pound dog rug-surfing on a 5x7 area rug? She doesn't even try to go upstairs, but is content to sleep right at the bottom of the steps at night so nobody can get up or down without waking her. She is on guard! After all, at the end of the day, she is still an Akita!

So! What has all this got to do with frontotemporal degeneration (FTD)? I said all that, so I could say this:

A report released last week by researchers at the University of Maryland may have found the prescription for preserving and enhancing the mental health and physical function of the more than five million Americans suffering from dementia and Alzheimer’s disease is a wagging tail and warm nose.

Presented at the International Association of Human-Animal Interaction Organization (IAHAIO) Conference in Chicago, Ill., the study was done in collaboration with the WALTHAM Centre for Pet Nutrition. University of Maryland lead researcher Dr. Erika Friedmann explained the positive results of the study conducted among 40 dementia residents in assisted living facilities.

After 12 weeks of twice weekly 60-90 minute visits with the female Welsh Corgi dog used in the study, participants ranging in age from 56-92 experienced increased physical activity, measured in additional calories burned beyond activities of daily living, and no increase in depression which is typical of those with dementia.

“Normally we would expect to see a decline or deterioration, both in physical and mental health, in this population,” says Dr. Friedmann. “But the results demonstrate how animals integrated into therapeutic programs in facilities, rather than just relying on visitations from pet therapy volunteers, show real protocols can help specific issues.”

One gentleman in the study who suffered with dementia and Parkinson’s disease found it difficult to open the plastic baggie with his shaking hands to feed the dog her treats. However, instead of becoming frustrated, he asked the researcher if he could try again and the research team observed his improved mental and physical health on days the Corgi would visit.

Dr. Friedmann has conducted numerous studies in human-animal interaction (HAI) including a 1980s study of heart attack patients who adopted a pet after release from the hospital. Her findings were patients with a pet were more likely to be alive one year later than those patients who did not own a pet.

Replicating the study 15 years later, she found pet ownership not only relates to survival rates but also helped ensure social interaction for the patients with pets. This increased social activity helped the patients avoid the depression of isolation common among heart attack survivors.

Dr. Friedmann’s research led her to work with the American Heart Association to create a scientific statement on pet ownership as one prescription for cardiovascular health.
For the 15 million caregivers of those with Alzheimer’s disease and dementia, finding memory care facilities which offer pet therapy programs or even considering pet ownership or visitations may help the overall health of a loved one.

In a 2009 study, Complementary Therapies in Clinical Practices, older patients attained significant improvement in perceived energy levels and reductions in pain, respiratory rates and negative mood state with pet therapy.

The animal interaction allowed these seniors to reduce their anxiety, fatigue and inertia and gave them a renewed sense of purpose, distraction from physical distress and a comforting reminder of home.
Pet therapy is not a new concept. There are anecdotal stories from the 1700s and the first recorded program was in the 1860s when famous nurse Florence Nightingale recognized animals provided social support in the institutional care of mentally ill patients.

Since then, the therapeutic effect of pet interaction for both young and old have been supported by grants from the National Institutes of Health (NIH) and other organizations. Identifying benefits in pain management for terminal or chronically ill patients; reducing depression for seniors living alone and in isolation; and improving physical rehabilitation for those who recently had surgery or those with disabilities or disorders such as autism, Alzheimer’s, multiple sclerosis and Parkinson’s disease, are the wonderful results pets provide in our approach to holistic health care.

Jan Vincent, a board of directors member for the Animal Health Foundation, find animals have special healing powers and a sixth sense that connect with us even in unconscious states.
“Dogs have a keen sense of smell that is so acute they can identify the hormonal changes in our bodies such as when cortisol is increased giving us more stress,” says Vincent. “They are also keen observers – much better than people – and read our body language perfectly.”

Vincent says if a person is anxious, fearful or sad, animals, particularly dogs, will seek to soothe and nurture which makes them a magic potion for both patients and caregivers needing comfort.

Maybe Dr. Doolittle had it right – talking to the animals is the prescription we need for better health and wellness.

Some days are better than others, and Gracie makes every day just a little bit better.

Comments are welcome.

Friday, September 20, 2013

Busy Summer

Hoarder-house! Everything here went to auction.
Someone I used to know recently informed me that it has been over 2 months since I have posted anything new. I have a reason. I also have several excuses, but the reason is that with bvFTD for me thinking about doing something is just as good as actually doing it ...well - maybe not everything. Definitely writing a blog post. I thought about it many times. I really enjoyed thinking about it.

Now for my excuses. Basically they all fall into the category of: I was busy!

First off, Cindy demanded a large amount of my time and energy this summer dragging me here and there to do this or that just to make sure I didn't turn into a vegetable.  In addition to that we were still trying to get items to various auctions, and the Antique Mall. That has gotten to be a little overwhelming for me, and I am trying to cut back on the amount of "stuff" we have to move in and out. There were times this summer when my house looked like I was some kind of hoarder. Happily that only lasted a few days as we were sorting and packing to take things to auction. It is not as much fun now that it is profitable. Go figure!

...after 8 hours of surgery
Then Cindy had surgery on her ear. It was a major procedure which took over 8 hours. That was a long day for both of us. She is going to kill me when she sees that I posted a picture of her right after her surgery, but I am too stupid to be scared.  Her surgery was very successful, but took a few weeks to fully recover. Her doctor even says that eventually her sense of taste will return. We were hoping the surgery would end a series of ear infections, and had the added bonus of a 60% recovery of her hearing on that side. That brings it back to slightly better than average, and a hearing aid is no longer necessary on that side. That is a life-changing difference. Hopefully there will be none of the complications down the road with can sometimes occur with this type of surgery. My fingers are crossed!

Then both of my boys came for a visit. It was the first time in over 2 years that I had seen the both of them. A wonderful time was had by all. This big old house just seems happier with 5 or 6 people, a skunk, and a dog in it. We went to the
A nice dinner party.
Zoo one day, and hosted a huge dinner party one evening. Then my youngest son helped us move.

After 2 years of dating, Cindy and I finally decided the time was right for her to move in with me. Our friends said, "What took you guys so long?" I guess we were the last to know. Anyway- She listed her house for sale on a Friday morning, and sold it that afternoon. She made a great deal, and got a great price, but we had to get her all moved in just a couple of weeks. That was not in any way fun, and we are still trying to figure out what goes where ...and what to do with a storage unit full of odds and ends.

The move went well, and we are adjusting ...not easy all the time because bvFTD is always there to make everything just a little more challenging, but it is worth it. Though Cindy is well aware of my symptoms, my disease, and my likely future, she is not my keeper or my caretaker, but she is certainly my partner.

My kids caught us at the Zoo when we weren't lookin...
Just when we were really making progress getting things squared away, and everything was going great, I injured my right ankle again. I have a chronic issue with my Achilles tendon, and I strained it. It had been sore for several weeks because of all the moving, but I actually pulled it squatting down to clean out Kroozer's litter box. Hard to believe that after moving 20 car-loads of boxes up and down stairs I would injure my ankle cleaning Kroozer's potty-box. Well, it was pretty serious this time, and I was unable to bear any weight on it at all for over a week. Then I went grocery shopping when it started to feel better, and was
unable to bear any weight on it for another 3 weeks. Today is the first day in over a month that it does not hurt, but it is still feeling stiff and tight. I am being overly careful not to re-injure it. Somewhere in there Cindy started a new job, and we managed to have a garden, and I canned about 20 quarts of spaghetti sauce. We also made a few quarts of sweet relish, but the cucumbers didn't do very well this year. Maybe because it was cloudy, and rainy, and cold most of July and August. The pool was a waste this summer.

So those are my excuses, and my reason. I am sure I could come up with a few more. Overall, I have had a busy summer. Some days are better than others, and right now most days are really good.

Saturday, July 6, 2013

Manistee, and Munising Upper Peninsula Michigan June 2013.

June can be a little early to go camping in Northern Michigan unless you do not mind some chilly nights, and way early to go into the Upper Peninsula. Well, I suppose if you have one of those fancy travel-trailers (Definitely on my shopping list!) it would be OK, but ...just a few weeks ago they had 6 inches of snow in the U.P. (Yeah, snow in mid-May is not unusual up there.)

After the camping trip last year, we just could not wait to get back again and spend more time. Since
...I took the road on the left. This is an actual road.
finances are always tight, tent-camping is the way to go for us as it gives us more time to spend on vacation. The biggest expense is gas getting there and back. Because travel is the biggest expense I try to plan for as many days as possible once I get there.

Surprise! We went to the exact same place to start our trip, and camped in the exact same campsite. Good old number 12 at Marzinsky Campground in Manistee National Forest. Again, it was totally free! WooHoo!

We camped, and explored some of the off-road trails. The National Forest is just starting to set aside an area for off-road vehicles. We stopped at the Ranger's Office, and got a photocopy of a map stamped "DRAFT" in red all over it marking off the area of the more challenging trails with a couple shades of green highlighter. That was for us! There are 2 sections, and the one to the North is far better as the Southern area is all separated by roads, and is less challenging even though it is wetter and woodsier. Both are still well worth exploring. These trails are easily navigable for a Jeep in 4WD High Range in most places. There were only about 3 times I used low range to climb a hill, or slog through deep mud.

The original plan was to camp a few days at Manistee, allowing time one afternoon for Cindy to visit her son  in Travers City (an hour away), and then move on up to the Upper Peninsula for a week or so. Well ...plans changed: We camped for 3 days at Manistee, then went to Petoskey to meet Cindy's son, and visit  her ex in-laws which took a full day, so we stayed in a Motel that night. Happy Father's day to me! But ...I got through it.

The mud in this section was over a foot deep in most places.
 Any schedule I had went down the tubes on that Sunday. After that, I really didn't know what we were doing. I just went along as best I could manage. With bvFTD it is very difficult to make any kind of plans, and when they change "on the fly" it just wipes ya out - at least it did me. I didn't know weather I was coming or going ...but I got through it.

After the Petoskey fiasco we got to the Upper Peninsula, and all was well except for a side trip to Tahquamenon Falls. It turned out it was a Michigan State Park, so we turned around and left after a 2 hour drive to get there as we (and by we, I mean "Me') were boycotting Michigan State Parks due to their ridiculously high fees for out of state residents.

I suppose I should explain a little as to why I am so enraged by the policies of the Michigan State Parks towards out-of-state visitors. Because I live in Ohio they charge $36 for a yearly pass just to drive into the parks, or $8.95/day each time. Basically at Tahquamenon Falls all they did was put a fence around a huge waterfalls, and were charging people almost $10 to see it. That goes against my views of making nature more available for people, and in my view is unethical. Camping in the State Parks of Michigan is even worse if you are from out-of-state. The choice is to buy the $36 yearly pass (Oh yeah! The same yearly pass is only $11 for residents!), or pay an extra 8.95/day in addition to the regular camping fee which comes to almost $50 for the first night's camping fee with the Pass, or $25 a night without it.  That makes a week's camping in a Michigan State Park ridiculously expensive unless you are from Michigan. No thanks! Since they want to actively discourage out-of-state visitors, I will not go where I am not wanted. Hence I will not pay anything to the State of Michigan to use their State Parks. Maybe if there were a bunch of Parks I wanted to visit it would be a better deal, but until then I say, "Boycott Michigan State Parks!", and enjoy our National Forests.

 But I digress, as usual. As I said, "After the Petoskey fiasco we got to the Upper Peninsula, and all was well except for a side trip to Tahquamenon Falls." At least all was well after we left the Tahquamenon area, and toured Seney National Wildlife Refuge on the way to Munising. It was even better once we found our camp site ...and what a camp site it was!

It was getting late, and the campsite recommended by a friend turned out to be located in a Michigan State Park, so we looked elsewhere around the cluster of nearby small lakes about 15 miles South of Munising. We camped in Hiawatha National Forest, and with my Access Pass it was only $8.00/night. That is half price for a campsite with potties, a fire ring, and picnic table. Once again dispersed camping would have been free, but we were tired, and choosing a developed campground was easier than seeking out a dispersed site so late in the day after a long drive. As it was we were setting up camp as the sun was going down, and the mosquitoes were waking up for their evening meal.

We were camped right on a lake with Loons calling every morning and evening, a Whip-Port-Will that just wouldn't shut up, the occasional calls of a Sandhill Crane, and now and then a couple dozen Coyotes yipping and howling at the moon. Our first night there it got down to a very chilly 35 degrees! We had plenty of sleeping bags, and stayed warm and cozy inside the tent. We just layered on some extra clothing when we sat outside, and added an extra log or 2 to the campfire. The ghostly white mist rising off the lake next to the tent was beautiful in the moonlight. I spent over an hour after midnight enjoying some night photography. The half-moon, and sky full of stars reflecting on the misty lake gave plenty of illumination. The only sounds were the occasional laugh or call of a Loon, and that silly Whip-Or-Will.

We were the only campers in the entire campground near Munising until the morning we left when a monster travel trailer hauling a boat, a couple noisy kids, a couple dogs, and some grandparents showed up. It looked like there were 5 or 6 people, and 2 dogs, but sounded more like 30! Perfect time to leave !

Cindy screwed up her work schedule, so we came back 4 days early. Bummer! She had a calendar with her that she had maked Saturday as her day back to work. She had told our friend who watched Kroozer while we were away that we would be back on Sunday because she had to work on Monday, but somehow she forgot. I thought we had a few more days, but since my diagnosis I am unsure of myself. In the past I never would have doubted what I believed to be right, and would not have returned early. Now I trust other people's memory more than my own because my memory is unreliable sometimes. We ended up driving home on Thursday which cut the vacation a little short. We probably would have moved camp a couple hundred miles west into the mountains, or out on the point somewhere, or even down by Lake Michigan. But it all worked out OK because we got home and uncovered the pool, relaxed, and tended to the garden.

My bvFTD was cooperative most of the time. I did all of the driving except when Cindy drove off-road. We put 1665.3 miles on the Jeep, so it was quite a trip. I guess my driving is still passable using no accidents or close calls as a criteria. The cost of gas for the entire trip was about $320, and we spent less than $100 on lodging. Had we stayed a few days longer it would have been a very frugal vacation, but as it was I probably could have rented a nice cabin somewhere for a week

The biggest impact bvFTD has on taking a vacation for me is that I am almost totally incapable of planning anything. I can look at the brochures, talk to people, and see all the stuff online about our destination, and
what we want to see. I cannot put those places together. They are all disconnected, and unrelated to me. I used to have no difficulty planning a route including the attractions and stops in order, but not now. bvFTD has impacted the Cognitive Functions that facilitate Planning and Sequencing.

This really came to our attention about 5 days into the trip as we were driving to Marquette, the town just West of Munising, and in the "middle of nowhere." We had argued a little a few times over the past couple days, and it was always about where to go or what to do next, or what we were going to do that day. Discussing it in the car along the way to Marquette, I finally realized it was because I was no longer capable of sequencing and planning the events of the day. Answering the simple question, "What would you like to do or see next?" became an exercise in frustration.

I knew what I wanted to do, and what I wanted to see, but putting that into a plan that included driving to point "A", then on to point "B", have lunch at point "C", then explore around point "D" was impossible. I got frustrated, and didn't realize why at the time. Not realizing what is wrong is also a large part of bvFTD. I didn't even realize that I was frustrated because I was unable to make plans. Well ...Cindy was frustrated with me, too. That is until we finally figured out what was going on, and now she does the planning ... but in the future I will take charge of the vacation calendar!

Cindy read this post before I published it, and commented that I made it sound like she ruined our vacation. That is not the case at all. If it were not for her planning, and all of her organizing, and all of her hard work with the auctions, there would not have been any vacation. But ...we did come home early. Har!

I will post a few vacation pictures following this. Together we took over 700 pictures! There was lots to see.

Comments are always welcome.

Manistee and Munising vacation pictures 2013

This is the map showing the off-road trails. It took 2 days to explore.

The moon reflecting on the lake with flash to light the blueberry bushes in foreground. Loons were calling, and the Whip-Or-Will was singing non-stop.

The mist rising off the lake next to the tent on a chilly morning.

Nice camp site next to the lake at Island Lake Campground in Hiawatha National Forest.

Ruby dipping her toes in Lake Superior.

Cindy and I on the beach west of Munising on Lake Superior.

Old Iron Loading Docks at Marquette. These are no longer in service, but the newer ones are.

This is HUGE! In this picture taken in Marquette there is an ore freighter being loaded with iron ore, and if you look close you will see an entire freight train with 2 blue locomotives parked on top of the loading dock. I had to get about a quarter mile away, and use a wide angle lens to get it all in. Even at this distance I could hear the ore being loaded.

We went hunting for hidden waterfalls. Found about a dozen around Munising. There are a couple hundred in the U.P.. This is Wagner Falls, one of the easy ones to find near Munising.

Saturday, June 15, 2013

Cerebrolysin - A Promising New Dementia Drug

 Well, maybe Cerebrolysin is more targeted towards Vascular Dementia rather than bvFTD, but anything that promotes the growth and slows the death of brain cells sounds like it wouldn't hurt. There is a great

deal of information available on the internet, and I recommend searching for it if you are interested in additional insight. It was recommended by a reader that I look into it, and I would like to thank Scott for his comment on this blog, and his persistence in nagging me until I actually did it. Sometimes it is very difficult to stay motivated writing and answering. Every article or post is a little triumph. Some days are easier than others.

The following article appeared on the Psyche Central website. The Psych Central Network contains copyrighted material, trademarks and other proprietary information, including, but not limited to, text, software, photos, video, graphics, music and sound, and the entire contents of the Psych Central Network are copyrighted as a collective work under the United States copyright laws. There is a large selection of very interesting articles, blogs, and research located on their website located here: Psych Central – Mental health & psychology information and support.

New Drug Cerebrolysin Shows Promise for Dementia

By Traci Pedersen Associate News Editor
Reviewed by John M. Grohol, Psy.D. on February 3, 2013
Cerebrolysin, a promising new treatment made from pig brain proteins, has been found to enhance cognitive function in patients with vascular dementia — a type of dementia caused by damage to the network of blood vessels supplying the brain.

Those with vascular dementia often experience difficulty thinking quickly, concentrating and communicating and may suffer from seizures and severe confusion. There is currently no definitive treatment for vascular dementia.

For the study, researchers looked at data from six randomized controlled trials involving 597 people. All participants received Cerebrolysin intravenously in different daily concentrations and for different treatment periods, from a few weeks to three years, depending on the trial.
Cerebrolysin is currently approved in 44 countries worldwide, for stroke, dementia, and traumatic brain injury. Cerebrolysin is currently in Phase 3 trials in multiple countries in Europe. It is manufactured by Ebewe Pharmaceutical.

Cerebrolysin significantly improved cognitive function compared to standard care alone or placebos. Participants were tested on their recall, arithmetic or other cognitive abilities. The drug also had a small positive effect on patients’ overall clinical state. There was also some suggestion that long-term treatment was associated with greater benefits, although only two trials looked at long-term effects.
“Our review suggests that Cerebrolysin can help improve cognitive and global function in patients with mild to moderate severity vascular dementia,” said researcher Li He, M.D., of the Department of Neurology at Sichuan University in Sichuan, China.

“The results are promising but due to low numbers of trials, inconsistencies between trials, risk of bias in the way some of the trials were conducted and lack of long-term follow-up, we cannot yet recommend Cerebrolysin as a routine treatment for vascular dementia.”

None of the participants reported serious side effects from the drug, and non-serious side effects were no more common in those who took the drug compared to control groups.

“This indicates to us that Cerebrolysin is safe and well tolerated by patients with vascular dementia,” said He. “But the fact that it has to be given in regular intravenous infusions means it could be impractical for use on a large scale.”

 Well, Cerebrolysin does certainly sound promising. I would be very tempted to try it except for 2 main reasons: First it is only administered by intramuscular injection or Intravenously. Though I do not have any great needle-phobia (being Diabetic you get used to stabbing yourself with a needle even if it is just to test glucose levels), giving myself a shot every weekday for a few months isn't something I would seek out. In truth, it is something I actively avoid! Second, and most importantly, is the expense. Cerebrolysin is an unapproved drug available in the United States for research, no insurance will cover it, though I understand that it is legal to buy it as it is not a controlled substance. Since the recommended dosage is 5-10 mg/day 5 days a week for 3 months the cost is around $1200-$2400 at $40 for a 10/mg ampule. With the recommended 2 months off between treatment cycles it comes to over $3500-$7000 a year. Not many people with bvFTD have those kinds of resources left. Most are on disability, and unable to work. Many have no insurance other than Medicare.

If my insurance would cover it, I would seriously consider it in spite of the downside of being a human pincushion. As for now I guess I will reorder some Lion's Mane Mushroom Extract. I haven’t taken it for a year, and maybe it helps.

Comments are welcome.

Saturday, June 1, 2013

Allergies And Auctions

Some items for sale at our space in the Antique Mall, Blissfield, Michigan
I apparently have survived another April, and it appears with any luck at all I will make it through May also. Last Spring, and the one before, were very difficult times. This year had its moments, but overall was much more manageable. I am not sure why. I do not think that I did anything different with the exception of using a different antihistamine.

Last Spring I began to suspect that the antihistamine I was taking might be causing some major problems with my working memory. I basically lost about 2 months of memory. I was OK "in the moment", and functioned passably well. I did avoid almost all social contact during that period, and became a total hermit. I wrote something about that in a previous post. This year was better.

I used Zyrtec, or rather the Dollar Store equivalent of Zyrtec, instead of Chlortrimaton or Sudafed, or a reasonable hand-drawn facsimile of them. That is the only change that I am aware of. Allergy season this year has been less severe than last, so I did not need as much medication overall. That may also have had some effect.

I still couldn't walk for several weeks. We have been trying to figure out just what it is that I do every Spring that aggravates my Achilles tendon. I get tendonitis so bad in my right foot that I end up totally non-weight bearing for a few weeks. For the past 15 years or so I have walked a couple miles every week in March, April, and May counting frogs. This year it was cut short by a few weeks, and I did not go in March. Since frog counting was only about 30% of what I have done in the past I do not think that is the problem. I also spend some time on a ladder putting the top on the guyzebo, and general spring maintenance. Then there is some gardening, which does involve either a garden fork or shovel. Both put a strain on the Achilles tendon.

Well, it could be most anything. My podiatrist hasn't a clue. Really that appointment was a total waste of time and money. After an exam and several X-rays the verdict was the same as it was 15 years ago. I have a bone spur at the insertion point of the Achilles tendon of my right foot. It causes flare-ups of tendonitis. Surgery is not recommended. Treatment options are limited to NSAIDS ...so after all that his advice is to stay off my foot when it hurts, and take Ibuprofen. Well, he also found some moderate arthritis in my toe joints, and evidence of a pretty severe sprain. I was well aware of that when it happened last November, and I was unable to walk for almost 12 weeks!

I might not have been walking all that well, but I was rarely immobilized for more than a couple days at a time. I limped, but I got where I was going. Good thing because I had a lot to do.

Sometime around February the bank which holds my house mortgage contacted me about refinancing. I had tried this a year ago, and after jumping through many hoops at their request, and plunking out nearly $1200 to get various surveys, and pay them for nothing they could ever justify, they pulled the loan offer. Supposedly we were going to closing, and about 4 days before my rate-lock expired I received a letter from the bank stating they would no longer refinance my house. I felt used and abused! Betrayed! Screwed! Bait & switched! Did I say I was displeased?

In talking to a few other people locally I found that they had had a similar experience. All of them had dealt with 5/3 Bank, and had spent between one and three thousand dollars only to have the loan fall through.

Needless to say I was sceptical when they contacted me again. I explained what had happened the year before, and was told that there had been some problems in the Michigan office, several people were no longer associated with 5/3, and that my refinance would now be handled through the Cincinnati office. Well and good. They then said the cost of the refinance would be $350. I believe my exact words were, "Fuck you!" ...and I hung up.

Well, a couple days later I received a phone call from 5/3, and they said that they had checked the records from last year, and things had been mishandled so badly that they would re-do it without any additional fees. I said OK. So, I have been jumping through hoops again providing all kinds of unnecessary paperwork because everything from last year was "lost", but supposedly the refinance should close in a couple of weeks. The interest rate is actually a full percent lower than that offered a year ago. Other than that the terms are the same. The benefit is a house payment that is a couple hundred dollars a month lower, and my ex-wife's name will be removed from the mortgage. YAY!

In the event that this refinance falls through again, I will look at my house payment as rent. Maybe when I am ready to move to a smaller place I might be gone several months before the bank realizes this old house is empty, and that the pipes, radiators, and wiring have all been stolen by thieves in the night, and sold for scrap. ...but hopefully it won't come to that. It is always good to have a "plan B".

Finances have been tight, as usual. I sold some old role-playing games I had collected, along with some collectible cards and magazines. That caught up on some bills, and left a little to buy some stuff at auctions. My friend Cindy and I have been buying, and more importantly selling, all kinds of odds and ends, antiques, and collectibles, since selling the games. So far we have just about doubled our investment, but still have a long way to go because we still have too much tied up in inventory.

The downside is that my house looks like something from the TV show Hoarders for weeks at a time with boxes of "stuff" everywhere. It is a lot of work cleaning things up, repairing them, sorting it all, and repackaging it into new lots for the different auctions. Some of the stuff is really dusty, musty, and dirty. Do you remember the part about the allergies? Some of it we just "sort to the trash". Some of the nicer items we sell directly, or place in our booth at the antique mall. The upside is that it is like a treasure hunt. We have found some really kool stuff in some of those boxes.

For example: We paid $2.50 for about 250 teddy bears. There are bunches of Boyd's, Ty, and other name brand collectibles. All kinds, and all in perfect condition. Some dolls too, and a few can be seen in the picture above. We have sold a few dozen, and made more than 10 times the investment already ...but that still leaves a couple hundred teddy bears on my front porch. Oh bother! I purchased 2 dehumidifiers at an auction for $6 each. Cindy sold them for $225. Nice profit! There are loses, too. About $100 worth of vintage games sold for a whopping $19! Ouch! Basically, that is what we have been doing for the past couple of months. It is more than a hobby, but not really a business yet. It is a lot of fun, and a lot of work, but it sure beats begging for handouts on the street.

Oh yeah! I almost forgot that I have bvFTD. Most days it is just a part of my everyday life now. I am taking the same medications, and still have occasional side effects. I have adapted where I can, and just muddle through the rest of the time. I have some assistance, but am still independent ...like my politics. So, how does bvFTD fit in to all of this auction stuff?  I walk around in circles a lot, can't remember why I just went into the kitchen, load and unload the same box a few times, can't do even simple math (for example I was going to put the actual profit down for the dehumidifiers, but I am not capable of doing even that simple computation any more). I can't plan the sales, or make the phonecalls to the various sellers. I am a total waste, and Cindy does most of the work and planning. But hey! I buy stuff! I bid a dolla!

Some days are better than others.

Saturday, March 30, 2013

Semantic Processing - Impaired early in MCI and Dementias

Since semantic processing has its seat in the left temporal lobe this may be a useful way to assess impairment in people with FTD at early stages where most of the tests used for Alzheimer's are inconclusive. We certainly need better methods of assessment. Not only for diagnosis, but also for
The left temporal lobe is about "here".
determining any benefits of medications in trials. Most of the tests currently used fail to differentiate changes in people with FTD because they were developed specifically to test Alzheimer's symptoms which in the early stages of the diseases are very different.

MANHASSET, NY -- People who study or treat Alzheimer’s disease and its earliest clinical stage, mild cognitive impairment (MCI), have focused attention on the obvious short-term memory problems. But a new study suggests that people on the road to Alzheimer’s may actually have problems early on in processing semantic or knowledge-based information, which could have much broader implications for how patients function in their lives.

Terry Goldberg, PhD, a professor of psychiatry and behavioral science at the Hofstra North Shore-LIJ School of Medicine and director of neurocognition at the Litwin Zucker Center for Research in Alzheimer's Disease and Memory Disorders at The Feinstein Institute for Medical Research in Manhasset, NY, said that clinicians have observed other types of cognitive problems in MCI patients but no one had ever studied it in a systematic way. Many experts had noted individuals who seemed perplexed by even the simplest task. In this latest study, published in this month's issue of the American Journal of Psychiatry, investigators used a clever series of tests to measure a person’s ability to process semantic information.

Do people with MCI have trouble accessing different types of knowledge? Are there obvious semantic impairments that have not been picked up before? The answer was "yes."

In setting out to test the semantic processing system, Dr. Goldberg and his colleagues needed a task that did not involve a verbal response. That would only confuse things and make it harder to interpret the results. They decided to use size to test a person’s ability to use semantic information to make judgments between two competing sets of facts. “If you ask someone what is bigger, a key or an ant, they would be slower in their response than if you asked them what is bigger, a key or a house,” explained Dr. Goldberg. The greater the difference in size between two objects, the faster a person -- normal or otherwise -- can recognize the difference and react to the question.

Investigators brought in 25 patients with MCI, 27 patients with Alzheimer's and 70 cognitively fit people for testing. They found large differences between the healthy controls and the MCI and Alzheimer's patients. “This finding suggested that semantic processing was corrupted,” said Dr. Goldberg. “MCI and AD (Alzheimer's disease) patients are really affected when they are asked to respond to a task with small size differences."

They then tweaked the task by showing pictures of a small ant and a big house or a big ant and a small house. This time, the MCI and AD patients did not have a problem with the first part of the test -- they were able to choose the house over the ant when asked what was bigger. But if the images were incongruent – the big ant seemed just as big as the small house – they were confused, they answered incorrectly or took longer to arrive at a response.

Patients with MCI were functioning somewhere between the healthy people and those with AD. “When the decision was harder, their reaction time was slower,” he said.

Would this damaged semantic system have an effect on everyday functions? To answer this question, investigators turned to the UCSD Skills Performance Assessment scale, a tool that they have been using in MCI and AD patients that is generally used to identify functional deficits in patients with schizophrenia. The test taps a person’s ability to write a complex check or organize a trip to the zoo on a cold day.

This is actually a good test for figure out whether someone has problems with semantic knowledge. Semantic processing has its seat in the left temporal lobe. “The semantic system is organized in networks that reflect different types of relatedness or association,” the investigators wrote in their study. “Semantic items and knowledge have been acquired remotely, often over many repetitions, and do not reflect recent learning.”

Dr. Goldberg said the finding is critically important because it may be possible to strengthen these semantic processing connections through training. “It tells us that something is slowing down the patient and it is not episodic memory but semantic memory," he said. They will continue to study these patients over time to see if these semantic problems get worse as the disease advances.

In an accompanying editorial, David P. Salmon, PhD, of the Department of Neurosciences at the University of California in San Diego, said that the “semantic memory deficit demonstrated by this study adds confidence to the growing perception that subtle decline in this cognitive domain occurs in patients with amnestic mild cognitive impairment. Because the task places minimal demands on the effortful retrieval process, overt word retrieval, or language production, it also suggests that this deficit reflects an early and gradual loss of integrity of semantic knowledge.”

He added that a “second important aspect of this study is the demonstration that semantic memory decrements in patients with mild cognitive impairment may contribute to a decline in the ability to perform usual activities of daily living.”

Thursday, March 14, 2013

Why There Are No Approved Treatments For bvFTD: Regulatory Innovation and Drug Development

Though not specifically about bvFTD, this article should apply to all drugs being approved for use in treating early stages of dementia, no matter what flavor.

Regulatory Innovation and Drug Development for Early-Stage Alzheimer's Disease

Nicholas Kozauer, M.D., and Russell Katz, M.D.
March 13, 2013DOI: 10.1056/NEJMp1302513
In reviewing new-drug applications for the treatment of Alzheimer's disease, the Food and Drug Administration (FDA) has maintained that claims of improved cognition should be accompanied by evidence of improvement in function. However, the premise that effective cognitive improvement will be manifested in the functional assessment of patients is untenable in the case of early-stage Alzheimer's disease, which is increasingly the target of drug-development efforts. We simply do not yet have drug-development tools that are validated to provide measures of function in patients with Alzheimer's disease before the onset of overt dementia. Improvement in function, moreover, could lag substantially behind cognitive improvement mediated by pharmacologic agents early in the course of the disease. In view of the devastating effects of this disease on patients and their families, along with its growing prevalence, innovative approaches to trial design and end-point selection are urgently needed, especially as the drug-development community turns its sights on early stages of the disease.

The current landscape of research and drug development in Alzheimer's disease offers a study in contrasts. On the positive side, numerous discoveries over the past decade have begun to unmask complex pathophysiological processes that underlie disease progression. Such advances have, in part, resulted from large, well-organized observational studies, such as the Alzheimer's Disease Neuroimaging Initiative (ADNI), that have elucidated various disease biomarkers that reflect, or even predict, the progression of disease. On the negative side, drug discovery has been disappointing. Despite all best efforts to translate mechanistic insights concerning Alzheimer's disease into new drug products, several candidate agents have failed to demonstrate efficacy in large, well-designed, phase 3 clinical trials of late-stage disease.

The hallmark pathological feature of Alzheimer's disease is the presence of brain plaques, consisting primarily of β-amyloid peptide aggregates. Accordingly, the abnormal production and aggregation of β-amyloid peptide, associated particularly with late-stage disease, has been the principal target of many drug-development efforts, including the recent phase 3 efforts that failed to result in new drug products. To account for these disappointing results of trials involving patients with overt dementia, a leading theory posits that the attempts at intervention may have been made too late in the progression of disease, at a stage when neuronal damage had become too widespread. According to some models, levels of β-amyloid peptide in the brain reach a plateau before the earliest symptoms of Alzheimer's disease are apparent.1 A further hurdle to interpreting clinical failures is our limited understanding of how β-amyloid production may contribute to the pathophysiology of the disease. Because the biologic role of β-amyloid peptides is uncertain, researchers are also investigating alternative targets of intervention at various stages of progression.

The focus of drug development in Alzheimer's disease has increasingly been earlier disease stages, before overt dementia. This refinement of focus, however, raises important new challenges because the subtleties of cognitive impairment in patients with early-stage Alzheimer's can be difficult to assess. Moreover, the range of focus must extend to healthy people who are merely at risk for the disease but could benefit from preventive therapies. In recognition of these shifting challenges, the FDA has developed guidance for the design and execution of clinical trials involving patients who do not present with dementia.
One aspect of the FDA guidance covers the selection of patients for trials in early-stage Alzheimer's disease. In particular, we have acknowledged the consensus emerging within the Alzheimer's research community that clinical diagnosis of early cognitive impairment might be paired productively with appropriate biomarkers of disease — criteria that have been delineated and are being validated by various working groups. Such biomarkers might include brain amyloid load (e.g., as measured by positron-emission tomography) and cerebrospinal fluid levels of β-amyloid and tau proteins. Ongoing efforts by the research community to qualify biomarkers in clinical trial designs and methods for enriching study populations with patients with early-stage Alzheimer's disease reflect important FDA priorities.

A specific suggestion that is also offered in the agency's guidance for trials focusing on patients in whom overt dementia seems imminent is the use of a single scale that combines assessment of both cognition and function, such as the score on the Clinical Dementia Rating Sum of Boxes (CDR-SB), which rates patients on a series of six domains covering various aspects of cognition and daily functioning. For patients whose disease is at an even earlier clinical stage, so that functional impairment would be more difficult to assess, it might be feasible to approve a drug through the FDA's accelerated approval pathway on the basis of assessment of cognitive outcome alone. The accelerated-approval mechanism allows drugs that address an unmet medical need to be approved on the basis of a surrogate end point or an intermediate clinical end point (e.g., a sensitive cognitive measure), with the stipulation that postapproval studies will be conducted to verify the clinical benefit. Such a regulatory process may hold promise for facilitating the approval of treatments that appear to be effective in early Alzheimer's disease, when patients might be expected to derive the greatest benefit.

Despite our growing understanding of the relationship between various disease-based biomarkers and the clinical course of Alzheimer's disease, it remains unclear whether the effect of a drug on one or more such biomarkers can actually predict a meaningful clinical benefit. This concern was reinforced by the recent phase 3 trials of amyloid-lowering agents that failed to improve cognition despite appearing to interact with putative targets in the brain. It remains possible that an effect of an intervention on one or more biomarkers could someday be accepted as predictive of a clinical benefit, but further research will clearly be needed before the effect of an intervention on a single biomarker alone could be considered an adequate surrogate measure for the purposes of accelerated approval of a candidate drug for early Alzheimer's disease.

As the focus of drug development has shifted to earlier stages of Alzheimer's disease, many new and challenging scientific questions have emerged, and the regulatory framework under which such therapies are evaluated should evolve accordingly. The FDA remains committed to innovative approaches to the evaluation of drugs that are in clinical development. Effective treatments for the devastating disorder that is Alzheimer's disease are urgently needed, as the world's population continues to age.

Wednesday, March 6, 2013

Green Tea Extract Interferes With the Formation of Amyloid Plaques in Alzheimer's Disease

Though this article is specifically dealing with Alzheimer's rather than bvFTD, anything which dissolves or interferes with plaques or protein aggregation is of interest. This just published on Science Daily:

Green Tea Extract Interferes With the Formation of Amyloid Plaques in Alzheimer's Disease

Mar. 5, 2013 — Researchers at the University of Michigan have found a new potential benefit of a molecule in green tea: preventing the misfolding of specific proteins in the brain.

The aggregation of these proteins, called metal-associated amyloids, is associated with Alzheimer's disease and other neurodegenerative conditions.

A paper published recently in the Proceedings of the National Academy of Sciences explained how U-M Life Sciences Institute faculty member Mi Hee Lim and an interdisciplinary team of researchers used green tea extract to control the generation of metal-associated amyloid-β aggregates associated with Alzheimer's disease in the lab.

The specific molecule in green tea, ( -- )-epigallocatechin-3-gallate, also known as EGCG, prevented aggregate formation and broke down existing aggregate structures in the proteins that contained metals -- specifically copper, iron and zinc.

"A lot of people are very excited about this molecule," said Lim, noting that the EGCG and other flavonoids in natural products have long been established as powerful antioxidants. "We used a multidisciplinary approach. This is the first example of structure-centric, multidisciplinary investigations by three principal investigators with three different areas of expertise."

The research team included chemists, biochemists and biophysicists.
While many researchers are investigating small molecules and metal-associated amyloids, most are looking from a limited perspective, said Lim, assistant professor of chemistry and research assistant professor at the Life Sciences Institute, where her lab is located and her research is conducted.
"But we believe you have to have a lot of approaches working together, because the brain is very complex," she said.

The PNAS paper was a starting point, Lim said, and her team's next step is to "tweak" the molecule and then test its ability to interfere with plaque formation in fruit flies.
"We want to modify them for the brain, specifically to interfere with the plaques associated with Alzheimer's," she said.

Lim plans to collaborate with Bing Ye, a neurobiologist in the LSI. Together, the researchers will test the new molecule's power to inhibit potential toxicity of aggregates containing proteins and metals in fruit flies.

Other authors of the paper, all from U-M, are: Sanghyun Lee and Jung-Suk Choi of the Life Sciences Institute; Alaina DeToma, Suk-Joon Hyung, Akiko Kochi and Brandon Ruotoloa of the Department of Chemistry; and Jeffrey Brender, Ayyalusamy Ramamoorthy and Subramanian Vivekanandan of the Department of Chemistry and Biophysics.

The work was supported by the National Institutes of Health, Alzheimer's Association, Alzheimer's Art Quilt Initiative, American Heart Association, and a Graduate Research Fellowship from the National Science Foundation Study.

University of Michigan (2013, March 5). Green tea extract interferes with the formation of amyloid plaques in Alzheimer's disease. ScienceDaily. Retrieved March 6, 2013, from http://www.sciencedaily.com­ /releases/2013/03/130305145137.htm

Thursday, February 28, 2013

SAGE and SLUMS. Take These Dementia Screening Tests Free Today!

OH! They were actually kinda fun.
I highly recommend these 2 tests - the SAGE and the SLUMS. I have taken them both, and they actually were able to identify some cognitive impairment in me. Having bvFTD, I am able to perform in the normal range on most of the tests used to diagnose Alzheimer's. Most people with bvFTD have no difficulty drawing a clock! If you have Alzheimer's drawing a clock is an issue. Many of the people diagnosed with bvFTD who have contacted me through my blog have also performed at or near normal on many of the tests given in a typical neuropsychological exam. Some are profoundly impaired, as I am, but still perform well on the standard tests.

Both the SAGE and SLUMS tests and instructions are available for download free from the following websites. The links to access them are provided below.

SAGE test (Self-Administered Gerocognitive Exam (SAGE))

SLUMS test (Saint Louis University Mental Status Examination (SLUMS))

SAGE is a brief self-administered cognitive screening instrument to identify Mild Cognitive Impairment (MCI) and early dementia. Average time to complete the test is 10 to 15 minutes. The total possible points are 22.

The SAGE test is self-administered. There are four forms of the SAGE test. Only one test form should be given. It does not matter which form is taken, as they are all interchangeable. SAGE should be filled out in ink without the assistance of others. Inform the examinee that there are four pages to complete. Calendars and clocks should not be available during the testing. Do not answer specific questions. Just say, "Do the best that you can."

If you decide to self administer, or administer this test for someone you know, you should understand this is an assessment tool and that you are not receiving an official diagnosis of mild cognitive impairment, Alzheimer's, or any one of the eight types of dementia.

If you find the test results suspicious, you should contact your doctor immediately, and ask for a neurological or geriatric consult. These specialists can determine, through a series of tests, whether or not you are suffering from or headed for Alzheimer's disease, or that you have nothing to worry about at this time.

Spoiler alert! Go take the test now before reading any further.

SAGE test (Self-Administered Gerocognitive Exam (SAGE))

SLUMS test (Saint Louis University Mental Status Examination (SLUMS))

I suggest you take the tests before continuing. I am going to write about some of my specific results which may give away some of the answers.

I self-administered the SAGE test. Most of it seemed very easy, and only took a few minutes. My test was scored by a friend, and that is the best way to do it. I would have scored myself higher because I knew what I meant to do. She saw what I actually did. This is an important distinction on a couple of the answers.

One of the questions on the form of the test I took (Form 1) was to copy a figure of a cube. I thought I did just fine, but she correctly docked me a couple points because my lines were not parallel. I thought she was just being picky, but the instructions clearly state she was correct in her scoring.

The test failed to identify the difficulty I had in figuring out the simple arithmetic problems presented. I had to resort to writing the problems in the margin, doing the necessary subtraction with great difficulty, and then again with great difficulty checking my answer before answering the test question. Only a few years ago these problems would have been simple to do entirely in my head without writing anything down. So, though I arrived at the correct answer, and so got the full number of points in the scoring, the test did identify a deficit. The issue was with the methodology, and not the actual test. I do not give myself full credit for getting the correct answer because of the antics I had to use to arrive at it.

Another question has you connect numbers alternating with letters in their proper order. I can do this just fine. I scored the full points. Part of my original neuropsychological exam included a much longer version of this test, but on that exam the task was timed. Though I was able to complete the task without any errors it took me more than 3 times longer than someone without any deficits. I was told this is a more typical result for someone with bvFTD.

After scoring myself hard on the arithmetic problem I am in the range indicating a mild cognitive impairment. Some days are better than others, and I was lucky that day.

I also took the SLUMS test. A version of this test was featured on The Dr. Oz show. Again I ended up in the range of score indicating mild cognitive impairment. That was mostly because I totally missed every part of the last question. It is a short paragraph to read, and then there are a few questions afterwards. I just didn't retain much of what I read. Again this is a huge change from what I was like only a few years ago. My short-term memory is drastically impaired!

UPDATE - I took the SLUMS test again today (3-27-2015). I guess it has been about 2 years since I took it last.  It was administered by a neurologist at The University Of Toledo Hospital's neurology center. My score was almost identical.  I was unable to do the math, and again messed up the last question. I did not lose points on the clock because I remembered from last time to be very precise in drawing the hands.

I suggest you take these tests, and record your results. Then take them again in a year or even 2 years. The SAGE test is especially good for this because there are 4 different forms of the test. That way you can take it 4 times without repeating the exact same form of the test and influencing your results.

This is a great way to measure your progression. A way to keep track of where you are, and how you are doing. It may even be a better way to measure how effective a drug treatment is. I wonder if I would score as well if I were not taking Namenda, Aricept, and Ritilin... probably not!

I want to repeat the cautions one more time because people with bvFTD are often stubborn, and ignore such things. I know this from personal experience. If you decide to self administer, or administer this test for someone you know, you should understand this is an assessment tool and that you are not receiving an official diagnosis of mild cognitive impairment, Alzheimer's, or any one of the eight types of dementia.

If you find the test results suspicious, you should contact your doctor immediately, and ask for a neurological or geriatric consult. These specialists can determine, through a series of tests, whether or not you are suffering from or headed for Alzheimer's disease, or that you have nothing to worry about at this time.

Comments are welcome.

Monday, February 18, 2013

Losing or Misplacing Items Around the House

Misplacing it is the easy part!
Lately I have been thinking about memory, and losing or misplacing items around the house. A couple incidents happened to me recently which brought it to my attention. Nothing really serious, but far enough out-of-the-ordinary for me to notice.

I am not talking about losing my car keys. I try to keep them in the same place, so I rarely ever have to go hunting for them. No. The other evening I could not find the remote control for the TV. Panic! I searched all over the house, upstairs and down. I tried to retrace my steps, looking in all the places I had been. It took me about a half hour to finally locate my remote control. It was sitting in a cast-iron frying pan on the stove. Actually it was right next to the kitchen stove, not on the burner, but close enough.

I had no memory whatsoever of picking it up, carrying it into the kitchen, or setting it in the frying pan. It was kinda funny when I finally found it there, and it was kinda upsetting at the same time. It felt completely different than it does when I misplace my coffee cup.

Within a few days of misplacing the remote control, I misplaced a credit card payment. I know it isn't exactly the same as misplacing an item around the house, but it felt like it was the same. I received a notice that my credit card payment was past due, and I was certain that I had payed both of them on-time as usual. I checked my bank statement, and sure enough both payments were there. I called the credit card company, and after talking to a real person for a while it became apparent what happened. I paid the small payment to the large amount, and the larger payment to the smaller amount. Criss-cross!

Other than losing a bill occasionally, or more likely having my stoner-mailman deliver it to the wrong address, I have never done anything like this before. I have a pretty good system for paying my bills. I keep them all in the same place, and pay online once a month. My budget is so tight that it is easy to keep track of the payments. I keep forgetting to pay the water bill, but I have to do that in person, so it falls outside of my routine. Routine is everything.

I try to put everything back in its place after I have finished with it. It is a work-around. I never really remember where I put things, but I know where to start looking when I put things away. When something is in the wrong place I know it is a symptom.

About a week or so later something else happened. It doesn't really fit into losing or misplacing things, but rather getting lost. I was driving, having just left a thrift store located in a nearby small town. I had been there many times, and was very familiar with the streets. My friend and I were talking, and all of a sudden I looked around, and had no idea where we were. Nothing looked familiar.  I had been distracted by our conversation, and missed my turn. The thing is that it did not feel like a symptom. It was funny, and we both laughed about it as we figured out the easiest way to get back on-track. Maybe the fact that I am more easily distracted is a symptom, but missing my turn at the stop sign felt pretty normal. My friend said at the time that when I think something is a symptom my voice changes. I have some awareness, or a feeling, when something is a symptom, and when it is just a normal screw-up. I have no way to tell if the feeling is valid, but it exists.

I did a little looking online for some information on misplacing things, and dementia. It is a more common symptom with Alzheimer's than with bvFTD, or so it seems. Of course there is overlap, and every case is different. At least I did not try to blame someone else for putting the remote in the frying pan, and I do not do it frequently. To my credit I did not fry it up, and serve it on toast or anything.

The following is from the DementiaGuide website. They list the following symptoms as being indicative of possible dementia, and I must admit that my behavior falls under some of these descriptions.

 Misplacing or Losing Objects:

    Frequently misplaces common items (e.g. glasses, brush, TV remote, keys)
    Frequently misplaces important items or documents (e.g. money, bills, identification)
    Wanders off with items and leaves them in uncommon places
    Can remember using something but can't remember where they put it
    Puts an item away for safekeeping, then can't relocate the item
    Notices something is not in its place and wonders where it went (e.g. a vase, a clock)
    Can't remember where things go (e.g. their proper place)
    Puts things away in the wrong place
    Puts things away in an odd place (e.g. eyeglasses in the freezer)
    Always looking for something
    Takes longer to locate missing items
    Needs help from others to find missing items
    Forgets what is lost while they are looking for the item
    Hides or hoards items

Misplacing or Losing Objects -a General Description

The neurological pathways that allow healthy people to remember what is lost while we look for something are complex. We must be able to hold an image of what we are trying to locate and why. We must also remember far enough into the past to have the idea of the last time we used it or where we put it. People with memory problems find this difficult. That is because some neurological pathways are damaged, causing trouble remembering the past, or having some sense of the sequence by which past events occurred. The person you care for may be able to remember using an item, but can no longer find that item. They may have forgotten where they put it, put it in an odd place by accident or have hidden it so that no one else can find it. As a result, they may require assistance locating the item. They also may need to be reminded of where the proper place for the item is located. When unable to find an item, they may believe that someone has purposely stolen or hidden it, which may lead to feelings of anger or frustration. Sometimes the person you care for may continuously and compulsively search for an item which they believe to be missing, which may not even exist.

Misplacing objects is of course also very common as people age, and some have well established, life-long histories of losing things. Often, with such people, what is different is that they have no idea where an object might be and no idea of how to efficiently go about finding it. Misplacing objects can also be a problem if it is coupled with suspiciousness, which is also common in Alzheimer's disease. Suspiciousness and misplacing can come together in a few ways to be a difficult problem. One is when the person with dementia has suspects that people might be stealing from them, and therefore hides valuable items, but can no longer remember where the item is hidden. Even worse, they may come to suspect that the item has been stolen, in that sense justifying their fears. Lacking a reasoned search strategy, they might believe that they have searched exhaustively when instead they have simply repeated a failed strategy many times. Even so they will feel suspicion and might even experience the frustration of losing and searching.

Another type of "misplacing" problem is commonly seen in the late mild to early moderate stage of dementia, especially Alzheimer's disease. This is when the person with dementia misplaces common household objects, commonly putting them in odd places. Often this happens with kitchen items, especially the dishes.

Comments are welcome.