Agony Today

With my legs, which feel like huge painful things that don't want to carry me, and my immobilizing, horrible belly/back pain, today is the worst day yet...no, possibly the worst ever. I don't use this space to complain but this pain is awful. Just awful...couldn't take the pain stuff because I've been alone with the baby, but called a babysitter a while ago just so I could. Now if it would just hurry up and start working...pleeeease......

Quick Note About a NIFTY Little Device I Got!

I ordered this last week, and it arrived yesterday, just in time to use on the trip to Midland and back for my appointment!

Now that I have Nellie - and LOVE her - it's so much easier to take her places and use her while riding in the van. Since most of my van-use is browsing (as opposed to typing), I've previously had to try to balance my laptop - or now Nellie - with my left hand while trying to manage the mouse on my leg or wherever I could with the other. Cumbersome indeed!

So I ordered this little finger trackball and instantly life on the road got easier! By the time we hit the expressway I was a'trackin' and a'clickin' like nobody's business. VERY easy to get used to, and so much easier that I'm using it all the time now.

I see that it hasn't gotten good reviews by previous users, and since I've been using it less than 24 hours I am sure that my experiences will be the same: it appears that it wears out fairly easily and isn't built to last. But I like it so much that I will always keep a spare on hand; the thought of using a mouse now doesn't thrill me.

The few people who have seen this, and seen how easy it is to use, have expressed a wish to have one for themselves. I'm tempted to buy a dozen or so, just for when someone tells me they want one - I can whip one out and they can buy it from me, on the spot! (If'n I were a rich woman I'd give them away...just so you know I'm not greedy or anything.)

Anyway, lovin' this little gadget!

First Appointment with the Gastro Doc Today

First, I liked her. She actually spent nearly an hour with me, taking history, asking questions, and examining me. And mostly, she didn't even flinch when I told her that I eat a low-carb high-fat diet. And I think she "got" that I have learned over the years to control my other gastro issues through the use of diet and supplements, and accepted that.

My husband and my sister were with me; both have a medical POA for me. And I was glad that they were able to fill in the blanks and offer their observations, as well as ask questions, that I didn't think of.

She didn't have answers yet of course, and offered up some possibilities. The next step is the scope to have a look-see and grab a biopsy from my stomach. She also mentioned a test to study the rate at which food moves through my stomach, but only scheduled the scope today. That will take place on June 2nd.

As I explained to my husband and sister afterward today, I don't want to speculate or even really much consider the various things she mentioned; I've done that in the past and they were always wrong. One of the things makes more sense than the others, especially given my history...but see? Here I go already, self-diagnosing and anticipating. I REALLY don't want to do that this time, and I don't want to think or talk about what MIGHT be...I want to wait to see what IS.

Will update as I learn, for sure, confirmed, anything...

The Cruelty of Lewy Body Dementia, Part II

I talked about LBD a little bit yesterday, and now want to share some experience with my mom.

After she was first diagnosed, and after her meds were adjusted (this took several months), she was fairly high functioning. She had short-term memory issues, but was able to carry on a conversation without repeating herself most of the time; she took care of herself, including using makeup and doing her hair on a daily basis, plus she did her nails, dressed carefully, and continued on as she always had in her personal habits. We went out several times a week, and she loved getting her hair done or going out for lunch or shopping.

As time has gone on, naturally her level of functioning has decreased with the progression of the disease, with severe dips when she has a UTI (these are VERY common in LBDers) or when she needs a med adjustment. These are addressed as quickly as possible, to restore her to a better state of mind as well as level of functioning. However, the LBD marches on, stealing more and more of her abilities. She no longer wears makeup, and will wear the same clothes for days at a time if allowed, although she does do her nails, and we get her hair done twice a month or so.

Now, 2 years after her initial diagnosis, she has longer and more frequent periods of confusion and frustration. The cruelty comes into play when she is in her lucid periods, and has no memory of the things she says and does when she's not lucid. She doesn't feel or believe she needs to be in a nursing home, for example, and believes she is well enough to drive a car, get a job, manage her own finances, etc. She strongly believes that, if she can't do these things, or live independently, she has no reason to live - so suicide is a recurring topic, though less so when her meds are more precise.

She's approaching another med adjustment now. In the past, she's only had them adjusted after she's become so paranoid and having such severe delusions and hallucinations that she needs immediate intervention. This time, I am seeing the signs and would like to see if all of that can be avoided. Her meds typically have needed adjusting every 6 months or so; right now, it has been 7.

Just as an example, here is a recent conversation I had with her:
Mom: I am going to leave the home and move to Florida
Me: Will you go back to the same area where you used to live?
Mom: Probably, there are a lot of jobs down there and all of my friends are there.
Me: You will stay in touch though, won't you? And let me come and visit?
Mom: Oh of course I will, and you can visit me anytime!
Me: I will miss you so much!
Mom: Where am I going? Where do I live? Where am I going to sleep tonight? Sherry, will you make sure I get home ok?
Me: Yup, we always get home ok don't me?
Mom: Oh that's right, I remember now! By the way, where is all of my money?
Me: You remember, I told you before, it is paying for your home, your medical expenses, your food...
Mom: Well I am so much better now, I can take care of those things myself, I just need a job and a car.
Me: OK, well I'll let you know if I hear of anything...
Mom: Something is NOT RIGHT about this! How did that happen, that I don't take care of my own bills anymore???
Me: I wish I remembered all of the details, mom...that was so long ago and I don't remember much since my stroke...
Mom: Oh that's right, don't worry about it honey, I can take care of it...where do I live again?

And so it goes. A couple of things I always have in mind when I'm talking to my mom: The first is that She cannot join me in my reality so I must join her in hers. There is NO WAY that she would understand reasoning or logic anymore, her brain is simply not capable, and in trying it creates frustration that quickly escalates to agitation and even combativeness in her - which is obviously counter-productive. The second is that she never remembers these conversations. I realize that she might, however, so I never say anything that can be construed as an agreement to help her in her quest for independence. Typically I will ask her about her plans, or to keep me in the loop, and she agrees to do so, but I don't tell her I will help her.

(It should be noted here that I had a "cerebrovascular event" - according the official diagnosis - in the fall of 2008. She can't understand that, or what it means - heck, I don't even know exactly what they mean by that - so just saying "stroke" is easier, and gives me a way out of a discussion that has no place to go but down.)

The biggest consideration for our mom, my sister and I agree, is that she be kept as content as possible. Early on in the disease, she was told the facts about LBD, her home, her car, her finances, her massive collection of beautiful clothes about which she was so proud, etc. There is no sense in repeating all of it continually, as it only brings her pain and sadness. And many times she's not able to understand it anyway. (ie, there is no room for thousands of pieces of clothing in her half-closet space - she still thinks she should have ALL of her clothes with her, and can't comprehend that there simply isn't space there.) So we have stories that we tell her - "Mom your clothes are all at Gwen's, carefully packed and stored, and they are safe" - about each of her concerns. Whether 100% truthful or not, these are words that keep her more calm and therefore content, and that is our goal throughout the course of this disease. The same with her meds. It is our goal that they promote tranquility over lucidity. Since there is such a fine line with meds in LBDers, when there is a choice between cognition and calm, we will choose calm every time. She is gradually losing her cognition anyway; trying to hang onto increasingly shorter periods of understanding for a few more weeks is futile. But we don't know how much longer she will live with LBD - it could be years - and we don't want her in misery from ANY cause during that time, if it could possibly be avoided.

I hope that in sharing my experiences with my mom on occasion, you will gain some understanding of the unique challenges of LBD. In my next LBD-related post I will share some more resources for more information.

Thanks for reading, and thanks for caring :).

Back to the PSR-E413 Again, Because...

...I've GOTTA share this link!

As I'd mentioned before, I have only had my Yamaha PSR-E413 keyboard for a few months, and am still learning about it...but I had NO idea it could do all of this!

What fun, I can't wait to learn how to do this myself!

Lewy Body Disease - A Particularly Cruel Killer

My mother, as I've mentioned, suffers with LBD. She lives in a nursing home atop a hill overlooking the lake about 1/3 mi. from my home (as the crow flies) - a 4-minute drive. I am her guardian although my sister and I share responsibilities.

There are websites that describe the nightmare of LBD, but so far I haven't found any single site that can tell the whole story. The best, most complete information that I've had access to comes from a combination of the Lewy Body Dementia Association site, and the caregivers - those of us who have lived with, or are living with, or are personally living the disease - in the LBDCaregivers yahoogroup, where they have also amassed an incredible amount of information in their files. There are numerous PDF files available here as well, although I haven't read them all, and so I can't verify the reliability of all that is there. But it is a repository of sorts, of files pertaining to the disease.

The symptoms and signs of this disease are quite varied, from wildly erratic blood pressure to terrifying hallucinations and delusions that are just as real to the sufferer as the computer on which you are reading this is to you. Another hallmark is fluctuating cognition; whereas other types of dementia commonly lead to a continual downward trend in cognition, LBD victims will have periods of near-normalcy that may last hours, days or even weeks (especially early in the disease), alternating with diminished congnition. They are even able to "showtime" - or seemingly turn off the behaviors - for short periods of time, usually to impress those outside of their immediate sphere that there is nothing wrong with them, or to function in a public setting, although this is not a willful act - ie, my mother can't turn it on and off "at will" but she can function more highly while in public, for example. She has no conscious control of this however. Many LBDers show periods of lucidity right up into their final days.

My mother has many of the common traits: the fluctuating cognition, hallucinations and delusions, constantly running nose, loss of her sense of smell (and therefore taste), aversion to bathing (although this is actually more common with other dementias), paranoia, blue toes, erratic blood pressure/falling, extreme, severe reactions to neuroleptic drugs, "showtiming", REM disorder, etc. She doesn't yet show parkinsonism, although 20% of LBDers never do.

My mother's symptoms are managed fairly well by a finely-tuned mix of medications. In an LBDer even the tiniest change in meds can have a huge effect, so her meds are adjusted periodically at a psych facility. (And, it cannot be noted often enough, many if not most of the commonly used drugs in treating dementias can have a harmful or even fatal affect on someone with LBD. This is why proper diagnosis is SO IMPORTANT, and treatment by a doctor familiar with LBD equally so. Unfortunately many doctors are unfamiliar, unaware, or unwilling, and can do great harm or worse to an LBD sufferer. We must be educated ourselves, if we have a loved one with dementia, so that we can protect and advocate for them.)

My mom spends the day with us on Sundays. We pick her up after church, and she helps me cook dinner, takes walks in the yard, plays with her "grandpuppies" and her year-old great-grandson, and just basically enjoys a day of normalcy every week. We do occasionally take her places during the week also, but she thrives on the routine and predictability of daily life at the nursing home. There is a definite decline in her status, as evidenced by increasing paranoia and confusion, when she is away too often or too long. And this has increased with time. Just a year ago we could take her places 3 times a week or more and she did fine. Now she begins getting agitated, worried, and more confused within hours of being away.

Her personality remains intact though, and she is still herself, even while talking about, or from within, the reality that exists only in her own mind. Her phrasing, gestures, and speech patterns are the same as they've always been; it's the words and the feeling behind them that is changing so drastically. She was diagnosed about 2 years ago, but in hindsight we now recognize that she was exhibiting symptoms for several years previous. Given that, I am thankful that we still have as much of her with us as we do. It's always in the back of my mind that she can start a rapid downward spiral at any time, and I treasure every minute that I have with her.

I will write more on this subject later. I haven't written as often about this as I'd originally intended, and I don't know why. Maybe it's all too close to the heart. But now I'm feeling a need to write more. And so I will...