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Friday, August 31, 2012

What happened to April 2012? A really bad month.



This tree in my front yard is flowering six weeks early.
Something changed drastically in late March of this year. I was doing well through the Holidays, and spent a great Christmas with friends and family. The post-holiday transition went well, and the decorations came down. Things were back to my normal comfortable routine. Things were going along as usual until about midway through March. Then everything changed for the worse, though at the time I did not really see it that way. I lapsed into what I can best describe as a type of "bvFTD Survival Mode."

First off, I remember almost nothing of this time period. It is what I refer to in another earlier post as "Missing Time." I do remember that I informed the woman that I had been dating for 6 months I did not want to see her for a while. When pressed by her for how long, I arbitrarily chose the date of May 9th. This had been my Mother's birth date, and was the first thing that came to mind as a date about a month away in May. I closed the doors, and some days did not open them. I did not want any visitors. When friends called, if I answered the phone at all, I just said I was busy, or had other plans, and discouraged company. I only went to the store when I absolutely needed something, and kept it short. The car remained parked in the yard for a week or more at a a time. I was a hermit. I removed almost all outside stress from my life.

All of my symptoms were suddenly much, much worse, and I had no idea why.

Yes, I was aware something was wrong. I was very afraid I was nearing (had reached!) a time when I needed to be in a care facility of some kind, or have some kind of outside help at home. Yes! It was that bad.

Instead, I dealt with it instinctually. I basically shut myself away until I got better. I did have some outside contacts and activities. I went every Friday night for a nice long walk in the park well after dark continuing with the volunteer work counting frogs which I had been doing for something like 12 years. A few times I felt better, and spent some time with old friends, but it did not last, and was just a day or so now and then.

None of my friends or family ever really suspected anything was wrong. After all ...I sounded just fine when I talked to them.

I met with my doctors, and discussed what was going on with me. My Neurologist and I developed a theory. I made some changes ...and I got better! Just like that! Almost overnight ...I was back to my simi-normal self.

So! What did we come up with? What did we do?

This, I suppose, is front-line applied medical research of a type the major drug companies, our bloated government, and the AMA abhor. But in reality they have failed us, and we are on our own. Hey, I am not a doctor, and I would never presume to give medical advice to others. I will, however, share my own personal experiences, and my own opinions. After all, I have bvFTD, and can share my opinion, sometimes at volume, and with great vigor, just about any time.

So, now, 6 months later I am looking back, and trying to figure out what went wrong, and what changes made things better. I am still not sure, but I will make some guesses loaded with intuition, and personal insight.

A couple things happened last March:
1. I changed my medications.
2. This Spring in Ohio was unusually hot, and the allergy season was much worse than usual for those, like me, allergic to tree pollen.

First the medications. When my allergies were bad I took antihistamines, usually a generic Chlortrimaton because it always worked well for me in the past with the only side-effect being increased libido. Yup! No down side there. When I had by routine blood work done, my blood glucose was elevated. This was no surprise given my weight gain of nearly 30 pounds since starting Aricept and Namenda. My doctor started me back on Metformin. I had taken it before, and tolerated it well. Of course, I was not taking Aricept or Namenda back when I was on it before. It has been 5 or 6 years since I had taken any drugs to control my blood sugar. My doctor said I was "diet and exercise controlled". The joke is I neither dieted nor exercised.

So maybe it was a reaction to starting the medication. I voiced my suspicion to my Neurologist, and he was unconvinced that Metformin was the cause. He was probably correct because I am currently still taking it without any adverse effects. If it was the Metformin causing the problems it was temporary. Maybe I just got used to it. I only mention it because it was a change in my medication at about the same time I started having problems. Maybe it was just a coincidence ...if you believe in that kind of thing.

First-and-a-half: Something else was going on at the time. My memory of it is very hazy, but I remember having a feeling of huge building stress in my romantic relationships getting more serious than I had planned, and having to choose between a couple of romantic options. I remember it as a heavy physical weight on my shoulders driving me downward. This situation resolved itself when one of the players removed themselves from the equation with a trip to Texas making my choices simple. I really don"t know how much, or if anything, this all had on the worsening of my symptoms, but it was going on and should at least be acknowledged as a possible contributing factor especially when the increased stress is factored into the overall equation.

The second is what we (Neurologist and I both) think really was going on. The weather was hot, and Spring was 4-6 weeks early. Last March in Ohio was bizarre with temperatures in the mid-eighties when it should have been freezing. Plants, trees, and everything else that could flower, fruit, or produce spores was doing so. The pollen and mold counts were astronomical in this area. My car was covered with yellow dust every day ...pollen.

My allergy symptoms were very bad. All the usual with ichy eyes, runny nose, sneezing, and even some mild asthma. I have always had allergies. I have always enjoyed the outdoors, and am a naturalist. I have never allowed my allergies to prevent me from doing what I loved to do. This Spring was no exception. I ignored my allergies as best I could, and went on with what I was doing. I was out in the park every week for several hours wallowing in all the pollen.

Well, I did a little research on a hunch. I looked into exactly what, if any, effects histamine had on memory. The connection seemed obvious to me: pollen - allergies-histamine-and anti-histamines.I didn't expect to find anything, so I was surprised when I found a lot. Histamine does effect memory. Who knew? One of my most severe and debilitating symptoms is a deficit in the functioning of my short-term memory. Duh! Could it really be something this simple?

I presented my theory to my Neurologist. He did not laugh it off. Instead he said another patient of his with bvFTD had had a severe setback similar to mine, but in that case it was clearly related to stress. His theory was that the allergies were acting as a physical stressor, and making my symptoms worse through the histamine pathway. The solution we came up with was to try taking anti-histamines more regularly, and switch to one of the more recent generations of drugs. I chose a generic version of Zyrtec because it was available at the Dollar Tree for a buck a box instead of $10 a box at the drug store. Yes, it is the exact same stuff!

Late Spring also brought on a cold snap returning temperatures to more normal, though still warmer than usual. Pollen counts remained high, but more typical of an Ohio Spring.

A few days after starting the anti-histamines, and using the air conditioner at night as a relief from the pollen, I was feeling better. A week later I was out and about, having company over, and by May 9th dating again. Lucky for me she is a very patient and understanding lady.

So, some days are better than others. Some whole months can be pretty bad. Most days, and most months are pretty good.

Comments are welcome.















Tuesday, August 28, 2012

Kroozer Loves the Pool

Well, he is a smart l'il skunk, and it has been one very hot Summer.

Yes, they are both sound asleep floating in the pool after a nice cool swim. Kroozer loves to swim around in the pool, but beware! He is a known pool-pooper! Arrrrrbhhhhhhh! Quick! Grab the net!

















Though Kroozer decided he did not care much for Pomegranate Margaritas, he sure did want to know exactly what was in that glass.

He is doing fine. Right now he is happily shedding all over the place. He does that about twice a year. He is a great pet, and a wonderful addition to the household. He is ideal for me because he is very low maintenance, and gets along well with my particular set of symptoms.

Some days are better than others, but every day is just a little better with Kroozer around.

Comments are welcome.

More about the camping trip. And a few pictures...


...pictures of what I wrote about in the previous post.

So, the campsite was nice, and we had great weather the whole trip. It wouldn't have mattered if it rained because that would just have made the off-road trails all the more fun. The camp kitchen, tent, and Ruby are all in this picture. So is Cindy.


You could always tell when you were driving on one of the main roads in the area because there were road signs..Hahahahahahahahahaha!





...OK, it isn't as bad as it looks. This is actually one of the best roads we were on that wasn't paved. The actual road does curve sharply left, and the road that continues straight ahead is a National Forest road which quickly deteriorates. The main difference is that the named roads are mostly passable, and the forest roads may be passable in four wheel drive with high wheel clearance. The question is: If a tree falls in the National Forest, and it lands on a road, will they remove it this year, or next year, or just let you drive around it through the woods and make a new curve in the road. Really! Anyway, this was a good road, so good in fact that it was named "Good Road". It was even in the Jeep's GPS system. Go figure! At one point we actually got Ruby up into 3rd gear. Three out of six ain't bad!

Yes!, Ruby has a six-speed manual transmission ... so with a 2-speed transfer case and low range that makes for 12 speeds forward, and 2 in reverse, with a couple of neutrals thrown in here and there. My doctor guesses I will have trouble driving the manual before I actually have trouble driving. I hope he is right! So far ...so good. With all that she is really easy to drive, and can go just about anywhere you dare to try, on the road, or off.

I was afraid my passenger might get bored hanging on for dear life bouncing around the seat next to me dodging occasional branches, so I coerced her into driving for a while. Ruby really is easy to drive, and very comfortable all things considered. Imagine my pleasant surprise a few minutes later when we were bouncing up a rutted hillside road, tires churning the dirt, as this woman giggled hysterically fists clenched on the wheel.

Did you notice that the rut in the road she is standing in is waist deep? It is hard to tell in the picture, but there was about a 30 inch drop off. Ruby didn't even spin a tire.

What great fun!



She is driving. I was taking the picture to prove it! This is a typical good part of one of the park's seasonal roads. They call them that because they just give up, and close them all when the weather gets bad.


We had many places where we had to turn around because the road ended, or there was a huge tree fallen across the road with no way around it. Sometimes the road just kept getting worse, and worse, and disappeared. Once the road just went right into a swamp. I think the road stopped a couple hundred yards before we did. It finally just got too rough, and there was no track to follow, and I could not see what was hidden in the tall weeds. But ...the trail continued to somewhere. I think there was an old saw mill back there somewhere, but I turned around before I got stuck. OK, there was really little danger of that, but I did finally have to use low range. That might just be a first!

We did not spend all of the time off-roading, but that was the most fun ...at least for me. I mentioned we explored the town. It was very picturesque in the "Historical Downtown District", but a little touristy.
The river walk along the Manistee River, in Manistee, Mi.


I spent a little time taking some pictures. There were plenty of flowers, and some other interesting scenery. The night in camp were cool. The temperature was around 80 degrees during the day, but dropped into the 50's at night. The campfire was welcomed, and were the Margaritas after a hard days play.

Our campsite at night. The light is from a Coleman Lantern.


One night, around two o'clock in the morning, and owl decided to give us a serenade from the tree above the tent. It screeched, whistled, hooted, and clucked for a while before moving on. From the sound of it , it was probably a Barred Owl, common in the park. We heard many different owls calling each night in the distance. Other than that, and the crickets, there was silence broken only by the faint sound of a car on the road a few miles away.  It was dark with no lights from any nearby city polluting the night sky, and the stars were amazing.
I adjusted this a little so it would show better on a computer, but the sky was black, and the stars ...the stars!


I wish I was there right now!



Comments are welcome
.


A-Camping We Will Go...

Such a nice little campsite... the fire place is off to the left.
I mentioned I had taken a vacation recently. A camping trip. I have not been camping since the boys were little. That horrible experience firmly decided me that I was too old for camping ...for the next 18 years! But, with finances being so tight, air travel such a nuisance now, hotels so expensive, and the cost of renting a cabin just out of reach the old tent started to look a lot better. Last year when I went to Michigan I discovered some great camping places. The best part is they are totally free! OK, so cost was the deciding factor here. It was camping for free, or nothing. See ...camping sounds better already.

My local town has a Corn Festival every Summer. It is a big deal locally, and draws nearly 15,000 people. Since my girlfriend and I planned to attend anyway, we decided at the last minute to get a vender's space. She had been doing this at some other festivals in the past selling her original creations. She sews aprons, purses, tote bags, bibs, place mats, table runners, blankets, and a bunch of other stuff in which as a guy I have almost no interest whatsoever. But she is very good at what she does, and her products are creative and high quality. Well, one booth turned into three, and we did very well at this one-day show.

I had been thinking about going camping for several weeks. I am extremely good at thinking about doing things. On the spur of the moment we decided to go because we had some profit from the festival.

In fact, we had enough extra profits left over to pay for the gas to Manistee National Forest in Michigan. (I just checked, and we drove a total of 777 miles round trip) Since a bright red, top-down, Jeep JK 4-door Wrangler Rubicon (Ruby) only gets about 18 MPG with a tail-wind and closely following a big truck this is no small expense. Especially when there is no money to spare. We had a headwind most of the way, and I was passing all those big trucks, so that sucking sound you may have heard was from the gas tank. It was worth it!

We arrived in the late afternoon on Monday, and searched around the area for a couple hours looking for a place to camp. After a couple hours of finding nothing but pay-sites costing up to $14 a night, of course we ended up right back at the very first place we had looked at. Just so you know: Dispersed Camping as it is called in Manistee National Forest is OK and free just about anywhere, but has no potties, no fire rings, and no picnic tables - totally rustic. The sites are just pull-offs along some of the dirt roads, unless you backpack in which case it is almost anywhere. The $14 per night pay-sites have picnic tables, fire rings, water, and potties. They are all primitive as there is no shower or flushing to be found just pits and hand-pumps, but they are the more typical campsite areas. We got lucky, and accidentally found a FREE campground with water, picnic tables, and fire rings. After talking with the Rangers we found that there are a few such places scattered around, and several others with rates as low as only $5 a night. Yes, we found a totally FREE campground with full primitive amenities such as they are. The bathroom was clean ...and there was a bathroom! WooHoo!

Smartly, we had practiced setting up the tent on Sunday. Not so much to practice, but more to see of it was still in one piece after sitting in the attic for 18 years. Happily, it was fine, and I remembered how it all went together. The tent is a vintage Riverside Lodge by Eureeka made of heavy canvas with aluminum poles. It is much heavier than the current crop of nylon dome-style tents I usually see. A very comfortable, and roomy 8x10 cabin-style tent. That means you can stand up anywhere inside of it because it has straight walls. Such luxury!

Way back in about 1974 or so I designed, and built a camp-kitchen. It is basically a large wooden box to sit on the end of a picnic table and house the cook-stove, and all the stuff you need to cook up a gourmet meal at a campsite. I still have it, and it still works great. We had everything we needed, and were all set up with a beautiful campsite in less than half an hour.

Camping was very easy with my Frontotemporal Degeneration's symptoms. My FTD did not really have any negative impact at all. Camping, when it goes smoothly and you are prepared, is very relaxing. There is almost no stress. No phone service was available. No computers. No television. Not even any neighbors. The whole campground was empty, with the exception of one other camper about a half mile away. No worries, and plenty of time to procrastinate. Yes we made lists so we didn't forget anything, and of course my girlfriend helped keep me on track as always, but overall it was easy. Camping seems a very good fit with my particular set of symptoms.

We spent the second day driving the Jeep all over the place exploring the parks off-road trails. Some of them were actually named roads and were in Ruby's GPS, with ruts and craters in them several feet deep, and overhanging branches hitting the windshield, and us because of course we had the top was down so we could collect more twigs, pine needles, leaves, spiders, and other stuff in the back of the Jeep as we explored. We drove about 100 miles off-road.

The third day there we did a little shopping in the bustling city of Manistee, MI. We walked along the river, and visited a few of the antique shops there. It was easy not to buy anything. Being really poor has that side effect. We finally got bored with the town and shopping, and did some more exploring.

I got a little sunburned walking along the river. Sunburn is a side-effect of several medications I take, and I turn red in just a few minutes if I am not careful. That is why you almost always see me wearing a hat with a wide brim. A Tilly, of course!

We spent Thursday packing up and driving home. No rush, but we had to return for some doctors appointments. We both wanted to stay longer, and should have. Since most all of the expense is in the gas getting to and from an extra couple of days would have cost nothing extra, and we had taken enough food for a week.

Oh! Yeah! We took a few pictures, so you may want to check out the following post cuz that is where I am gonna put a few of them.

So, just because I was diagnosed with FTD I have not stopped living my life. Yes, my life has changed drastically over the past several years, but it is certainly not over. I do not dwell on my diagnosis, or my symptoms ...well, maybe sometimes, but I try not to. I am always aware of both, or I am made aware of them because they are always there, but some days are better than others, and most days are pretty good.

Can't wait to go camping again. Never thought I'd have that thought again after the miserable (but fun, and funny!) times I had 18 years ago.

Comments are always welcome.

Just stopped back to this post to make an addition. As with every trip I have taken in the past couple of years it has taken me a few days to get back into my routine. I just want to veg out, and do nothing. I just closed the doors, and caught up on some old movies ...but I am not sure which ones. Oh well. Today was better. It has been almost 2 weeks since the trip, and I am starting to feel more normal. The trip was well worth it.



Hey! Look! There is Lee! He is still doing OK.

...always uphill, but some days are better than others!
Well, it has been almost six months since I posted anything about FTD, Frontotemporal Dementia (or as I prefer Frontotemporal Degeneration. I may have some issues, but I am damn well not "Demented!" ...most of the time) and even longer since I wrote anything of any significance. Lately I have been wanting to write again, and examining why I have not been doing so. Well, truth is I have been very busy procrastinating. Putting things off has become a full-time pursuit. I have thought about writing a post, and that has been just as good as actually doing it. It is a combination of motivation, and a lack of the ability to initiate the action. It is kind of like every time I wanted to write something I just sat on the couch and thought about it until any desire to do anything about it passed. So, why am I writing today? Beats me!

I looked back at some of what I had previously written. This is always a good barometer marking any noticeable changes in my condition. Fortunately I have noticed very little change in my condition. Unfortunately I have noticed very little change in my condition. Not much worse, but really not any better either. With FTD I suppose that should be considered a win.

My ability to do basic arithmetic is still very compromised. To the point where a couple months ago I overdrew my checking account even after using a calculator, and working out my deposits on paper. Oh well. So I was extra poor for a couple of weeks. Now that I am on disability finances are always tight.

I stopped taking most of my medications for several weeks when I was between insurance coverage. The biggest change I saw was an increase in my ADHD-like symptoms when not taking Ritalin. I can manage without it, but it does make everything easier to get done. I also noticed a lot more "Missing Time". Time moves very quickly for me anyways, but it flew by when I wasn't taking the medications. I did not stop either the Aricept nor the Namenda as I did not want to risk dealing with all the nasty side-effects starting them up again. Right now have very few side effects other than a weight gain of approximately 30 pounds. This, or the medication, or both, has contributed to my blood sugar being elevated again. I had been diet controlled for a few years, but I am now taking Metformin. I am now back on all of the medications, and supplements, except for the Lion's Mane Extract. I have not taken that since last Fall. It is time to re-order because I think it helped.

So, what have I been up to these past few months? Not much! I had written that I was exploring online dating. I had actually been doing that for a while. Dated, and broke up with a couple nice (and one not-so-nice) ladies. Then I met someone, and we have been dating now for just under a year. I managed to squeeze in a couple very nice vacations (most recently a camping trip!), and have made a few postings on my Nature Photography Blog following my outings. I watched a lot of movies, but don't ask me which ones. Kroozer is still fat, dumb, and a happy li'l skunk.

Overall I am doing very well. Of course some days are better than others. Most days are still pretty good, and the bad ones seem to fly by quickly ...at least in retrospect.
 

I hope to write more frequent posts in the future. We shall see how that goes. I think I will think about it...

Comments are always welcome.