Sunday, October 10, 2010

Lewy Body Awareness Week Oct. 10-16, 2010 #lewybody

I will be posting daily about Lewy Body Dementia this week. You can click on the title of any of the blog posts (when you are reading from my blog, not from elsewhere) to get the the Lewy Body Dementia Association to learn more about this disease, from which my mother suffers, as well as many many others. It is the 2nd leading cause of dementia, and is often misdiagnosed with tragic or even fatal consequences. Those of us with loved ones with a dementia diagnosis must arm ourselves with knowledge, and see to it that accurate diagnoses are made, and appropriate treatment protocols are followed.

One of the ways to learn more about LBD is to read the first-hand accounts of those who are dealing with it on a day-to-day basis, either as caregivers or as victims. Below is a list of LBD-related blogs, which is by no means exhuastive, but I hope that if any readers know of others they will inform me so that I can add to the list through updates. But these are the blogs that I follow:

Back Door Logic
Living With A Thief Named Lewy Body
Lewy Body Dementia, Dad and Me
A Psychiatrist With Lewy Body Dementia (Note: David hasn't posted in quite a while, but his earlier postings are still there to read.)
Lewy Body Dementia
Living With Lewy Body

Saturday, October 9, 2010

Cleaning The Garage!

Nearly 4-1/2 years ago we moved from a 1350 sq ft 9-room house in Lansing, MI to a 967 sq ft 6-room house here in Houghton Lake. And because we had a very short time in which to get packed and moved (2 days), things didn't get packed in an organized manner. Also, when I move I use the opportunity to get rid of lots of stuff - not having to pack and move and unpack it is impetus enough! But with the help of our church friends in Lansing it all gt done, the truck got loaded and everything made it here.

We put as much as we could into the house, and the rest went into the garage. Where it has stayed ever since. We have, over the first couple of years, sorted through and gotten rid of about 75% of our excess in the house but of course we've replaced most of it with more "stuff". The "stuff" in the garage, however, has been moved in and out quite a few times when one of us has needed something essential that we couldn't find in the house. Everything would get hauled out into the driveway, dozens of boxes and garbarge bags and loose items, then piled back in. Over and over again. We could have had the garage cleaned out long ago, had all of that effort been forth into doing so!

My husband is having hernia surgery in a couple of weeks. I work Mon-Fri., and he works most Saturdays, but this Saturday - an absolutely GORGEOUS, colorful day here in northern Michigan, we were both off. And a friend of ours offered to come and help us. So today was the day.

I had 3 goals: Get at least 50% of what was in there, out. To the trash, to charity, wherever - just out. Secondly, every box had to be SORTED. No opening boxes and setting them aside to go right back in. Third, no more cardboard. If it didn't fit into one of the dozen-or-so plastic bins I had, then it had to go. We also have cabinets, but each item had to have a home in a bin or cabinet. All cardboard boxes and plastic bags would be gone by the time we finished. And of course, "When in doubt, throw it out!"

So this morning we hauled everything out to the driveway - up and down the entire length of it -and put it in general areas: Christmas stuff, tools, fishing equipment, clothing, decorative articles, photos, pet supplies, etc. Then we took one area at a time and sorted through it. When all the areas were sorted, we assigned them a new spot in the now-cleanly-swept garage.

And it is finished. In the spring we will build shelves all along the side wall, where the bins can be neatly put. Along the back wall will be a large table, attached to the wall like a workbench, with cabinets underneath. The other side wall houses our chest freezer and spare dryer. (Our dryer has been teasing us with the threat of death for a couple of years now but when it started squealing and groaning we got another one, sure it would be needed within weeks or even days...) The workbench in back will be used for everything from wrapping gifts to rebuilding computers.

And that leaves a large area in the middle and the front. We will stretch screening over a frame to fit our garage door, and it will be a nice living area in the summer, with a table and chairs for cards or eating.

My former shop, which occupies the back half of the garage, still has a stove and a microwave in it, and I plan to put a small fridge in there also. It will also house our Yamaha keyboards, and have seating area for relaxing. Hubby and I each have a desktop computer back there also (we use our laptops most of the time), and we can use those with our keyboards for recording, or with our internet stick for streaming entertainment. Because the shop is insulated, heated, and air-conditioned, we will use it year-round, and in fact plan to have it set up within the next few weeks. Moving our keyboards and bookcase full of music back there will also open up one of the 4 living spaces we have up in the house and offer more space for, well, for living.

By the time we are done, we will have almost as much living space - at least in the warmer weather - here as we did in Lansing. And much more organized storage. And who knows, maybe by next fall we can winterize and remodel the entire garage for year round living too! Stranger things have happened!

But meanwhile...today the biggest and toughest part of the whole process got done. I can barely move (maybe once the vicodin and flexaril kick in...) but it was SO worth it!

Friday, October 8, 2010

A Good Description of Lewy Body Dementia

(If you click on the title of this post it should take you to the article.)
This is what my mom has. I've discussed it here before. And these are her symptoms, pretty much. She is just at the very beginning of possibly showing signs of parkinsonism, and is developing the "lewy lean" while walking as well as sitting.

This article was shared by the owner of the Lewy Body support group on yahoogroups. If you have a loved one that has been diagnosed with dementia or Alzheimer's that exhibits these symptoms, please find a "lewy-savvy" neurologist to re-evaluate them. If indeed LBD is diagnosed, there are often ways to manage their symptoms and increase their quality of life. Plus, an accurate diagnosis is important in keeping them from being injured, or dying, from getting the wrong meds.

Getting a proper diagnosis and a good solid med regimen, as well as the work that the nursing home has done - and is doing - with her on a daily basis, has literally given my mother back to me. I've had 2 years so far that I wouldn't have had, had I settled for the doctor's "all dementias are the same, you're wasting your time going to a specialist, he'll tell you the same thing!" statement.

Wednesday, October 6, 2010

Seeing, Driving, and Living

Ok, so it's been 3 weeks since my cataract surgery. As of Saturday, I'm now driving. Day and night. No problem. I can read standard print books again - even without glasses. I can read fine print that my husband needs a magnifying glass to read...and that's with my old lens in my glasses, which is way too strong according to the doctor that did the surgery (and this is borne out by my experience as well!).

At my one-week post-surgical checkup he was amazed that my eyes were already facing the same direction, and my double-vision was gone. He was very pleased with my progress, as far as my brain and eye working together, and my brain coordinating both eyes to see together, after years of non-use. But not as pleased as I was :).

I look forward to new glasses (which will be my first new pair since 2004). I'm going to go radical. Remember the show Two Fat Ladies? I might get glasses like Jennifer's. THAT would be radical!

Looking forward to having resolution to my gut issues later this year. Arthritis is, well, it's part of getting older...brain changes from my "cerebrovascular event" probably won't resolve if they haven't by now (although God has surprised me before!)...but the two worst things, the things that have impacted my life and caused me more pain and grief than anything, will be resolved by the end of this year.

I am so thankful!

Friday, September 17, 2010

The Day After #Cataract Surgery

This morning I got the protective shield removed at the eye doctor's office.

And, I could see. With the following limitations: It was like looking through brown sunglasses. Underwater. The images weren't fuzzy, but were "wavy" sort of. And dark. And doubled. And moving. And doubled.

Reasons: My eye has been unused/not communicated with my brain in so long that it is actually seeing the back of my (brown) pupil. Is that bizarre or what? The doubling is, of course, because it isn't facing the same direction as my right eye yet. The moving is because the muscles are twitching in response to being called back into action after several years.

However as the day has progressed the "brown" has pretty much gone away, so it is learning to how to use itself to actually see. The twitching has diminished greatly. I still have that "underwater" sense but it is better, and it will take time for the double vision (MAJOR double vision!) to go away. Everything inside looks "perfect" Dr. D said after his exam, so it is all just a matter of time. I have an appointment next Friday and he said that it may be gone by then even.

Meanwhile, pain around the brow bone is common from the drops they applied to decrease pressure and goes away within a day or so. It was bad enough that it made me sick to my stomach. I took pain pills, and have slept much of the day. He told me not to strain my eye in an attempt to get it to work sooner. It closes itself when it gets tired, and of course when I'm walking I keep it closed or I'd be running into everything - lol...when I'm sitting in my chair I open it and look around until it just shuts itself. A wet washcloth in the freezer for a few minutes per his suggestions has helped the brow pain greatly as well.

If I look around with just the left eye this evening, after my first dose of steroid drops to bring down the inflammation, I see colors which are almost too vivid (of course, having not seen them for a few years, they would seem that way), basic outlines of things (but like underwater), and could manage to get around using it alone although not reading or even watching TV....but a vast improvement from this morning. The double vision will be the biggest thing but he said that, worst case if it doesn't go away, there are lenses that will correct that when I'm wearing the glasses. But he's certain it will as my brain learns to "read" my eye again, and learns how to use my eyes together again.

I am feeling better tonight, and happy to have it done and healing. As my eye and brain adjust to be used again, and being used together, my life will definitely be drastically changed - for the better!

Monday, September 13, 2010

A Tale of Two Operating Systems

I remember back in the 80's when I was working in an engineering firm, and the powers-that-be decided they were going to change the entire computer system over to Windows. I saw nothing wrong with DOS and it worked fine for me, but I was dragged kicking and screaming into Microsoft's clutches.

Over the years I have adapted, and have learned to like having a GUI (although I still like to brush up on my DOS commands now and again), and begrudgingly have admitted to liking quite a few Windows features (the real ones, not the bugs-they-call-features!). I've dabbled just a bit in Unix in the 90's, but not enough to be of any real use to me, and looked at Linux a couple of times.

Then a couple of years ago I got my much-coveted Internet Tablet, and it was run on a Linux version called maemo. Thankfully it came with a nice user-friendly GUI which was of great help until I learned just enough coding to get by. I loved it. Still do as a matter of fact, and use my husband's N810 since mine met with an unfortunate accident a couple of weeks ago, daily.

Now it is 2010. My main machine is a netbook running on Windows 7 Starter Edition. My husband is messing around with another Linux version, this one called Ubuntu. After hearing him rave about it and its ease of use, and seeing all of the games that were available simply for the downloading, I installed it and gave it a shot.

Now mind you, there were things about Win7 that I really loved, such as its intuitiveness and its zip compared to earlier versions. There were also things I hated such as the disappearance of Outlook Express and the pastel colors which made things harder to decipher with my poor vision. It crashed, yes, but it also recovered itself which to me was a huge improvement! But after a couple of months it slowed way down, as Windows does. I doubled the RAM Kingston KHX4200S2LL/2G HyperX 2 GB 533 MHz DDR2 Notebook or Netbook Memory and got a bit of an improvement in performance, but really suspected in my heart of hearts that Windows was to blame.

So I started using Ubuntu more and more. I still used Windows during work hours but switched over to Ubuntu in the evenings and weekends. I got used to it more and more, added more apps, spent lots of time on the web, and still it never slowed down...

For my job - a phone answerer/scheduler for a pest control company - I use a Google Voice number that I then send to Skype and/or my cell phone. Skype is great, GV is great...but about a week ago I started getting dropped calls and error messages. Not happy that I had to start using my cell phone full-time (I love the headset and call quality using Skype with the netbook) I tried making all sorts of adjustments to both Windows and Skype settings. Nothing worked.

Jump to today. I put all of my files on a memory stick Kingston DataTraveler I - 8 GB USB 2.0 Flash Drive DTI/8GB and shut down Windows for good. Well, I'd like to say for good...in reality I will have to use it when traveling, since my USB internet access stick will only work with Windows.

But, since switching over, I haven't had a single dropped call, or even distortion in a call. My YouTube videos aren't choppy anymore. I have a half-dozen apps running and nothing is slowed down. My favorite game isn't jerky. Same machine, same memory - different o/s.

Buh-bye windows...you'll go on trips with me, but the honeymoon-that-never-really-happened is now over.

Wednesday, September 8, 2010

Just a Cataract Surgery...

That's all it really is. 10 minutes at most. Pulverize the old lens, suck it out, and bung in a shiny new one. It's easier than getting a tooth filled. And less painless. Piece of cake.

It is also a key to a new life.

At the time I had my right eye done about 6 years ago (a guess, I don't remember really) the cataract was already forming in my left. The plan was to get it done in about a year, when it would be "ripe" enough. Trouble was, a year later I no longer had medical insurance. Or at any time since. So the cataract grew and grew until a couple of years ago my doc told me that my eye looked like an old dog's eye. I haven't seen anything through it in several years. Oh, I can tell if the light is on or off, but that's it.

Besides seeing nothing, it has skewed my depth and distance perception more than you can imagine. I run into things, trip over things, and drop things (I THOUGHT I had it over the side of the table before I set it down...). I cut myself. I pour things all over counters, missing the open tops of containers. I burn myself. When someone hands me something, they better be prepared to hang onto it until my own hand feels for it and finds it, because I can't tell just where it is, just there in space in your hand. If it's shiny or transparent, more's the problem. I can't tell how high a curb is, or even if there is a curb in front of me. Concrete to ashphalt seams may or may not be at the same level and I don't find out until I've tripped over it. (Of course now that I use a walker, it gives me advance warning and has helped me to get around more confidently - and safely!) And a patterned carpet or floor appears to be 3D.

Speaking of floors, we went into a restaurant on Labor Day. As hubby headed for the rest room a young man was walking me to our table. I'd left my walker in the car, as we were parked right next to the door, and it was a small restaurant, and I was on pain pills so walking wasn't too painful at that point; besides, when I'm with Pete he helps me. It was a dark evening and the restaurant was dimly lit; the dark blue carpet had shadows everywhere. I felt panicked. As the kid rushed ahead of me, I was trying desperately to focus on the floor as I shuffled along. I finally called out to him to wait for me, told him my vision was very poor, I couldn't see the floor clearly, and asked if there were any ramps or stairs in my path. He commented that he's never tripped over the floor, then he and a nearby waitress had a good laugh at my expense. I was humiliated and wanted to cry...

Many times I wear a patch over my left eye. Take a flashlight and shine it into one of your eyes, and then look at something with the other one. Can't see clearly even though there's nothing wrong with that eye? That's how I see. My right eye is perfectly wonderful, but any light at all as that flashlight effect on my left eye. I can see much better if it is just closed AND patched, since merely closing it still lets in too much light to let my right eye do its job.

When I had my left eye dilated for the exam a few weeks ago, it was white. The eye doc let my sister look through the fancy schmancy instrument into that eye, and she said, "There's a SNOWBALL in there!"

I haven't driven for a couple of years. I can't tell whether that dark shape in the road is a big hole, a puddle, a shadow, a critter, or a child. Headlights or reflections instantly make it impossible to see. If someone is pulled over on the other side of the road, I can't tell if they're way over on the opposite shoulder, or right in front of me. With police lights on, it looks as if there are a half-dozen vehicles there. To say nothing of the messed up perception of traffic coming around curves or corners, or my distance from other vehicles, stop signs, etc.

So yeah, while it could be deemed "Just a cataract surgery," that quick procedure will change my entire life. MY ENTIRE LIFE.