Mistletoe (Missy), Buddy, and Snickers
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When I started this journey we had 3 cats too - Winston (Winnie – a tabby), Raven (a small black cat that Alexis brought home in her coat) and I brought Turbo (a good sized and very white cat smart enough to come when called and to sit)
Something I sent to a few friends/family on 6/13/09. I am including it here for posterity sake.
Hello all,
I’m not really sure how much longer I will be here so it’s probably better to say a few things while I still can. This is not meant to make anyone further worry about my situation but hopefully will provide you closure that only this technological day and age can provide.
I sent a link around from Patients Like Me (I can send it again if you thought it was SPAM) but in a nutshell I have MSA (multiple system atrophy). From what I can figure from the literature (and of course my own experience) my brain is disappearing or shrinking. Since I need those brain cells (and they are slowly doing this by the way) to do even the simplest task, I will someday not have control of even my involuntary muscles. Right now, after about 30 seconds to a minute, I lose control of my arms and legs (they move on their own), my ability to chew and just about anything you just tell your body to do. I used to type 100-125 wpm. Now I hunt and peck about 5-10 and stop often. I haven’t driven in 2 years. I don’t leave the house except to go to doctor appointments. I don’t have health insurance any longer as my wife lost her job and I make too much (>$12K/yr) to get help from VA (thank you George! Let’s save money, not help people).
I spend my days surfing the web (now that I have a laptop), watching TV and updating IMDB, napping and taking bathroom breaks, drinking something when I can (Hawaiian Punch or water but nothing carbonated) and eating (usually crackers). I don’t cook or prepare anything as that is too difficult but I have nuked a TV dinner if I feel I will last. I dream as though I’m fine so it’s a bit disconcerting waking each day to my nightmare. I can get really depressed when I watch a sad movie but generally just feel fair to midlin’. I don’t remember the last time I laughed or smiled.
I haven’t bathed in almost a year but we don’t have a bathtub any longer either. It was replaced last Fall with a walk-in shower minus the handles I asked for which wouldn’t help me much now anyway. My wife complains that I stink or my stench is ruining the couch but isn’t willing to help me use the sink to give me what I need. Scraping my skin with my nails is the best I can do although I did my best last week in the sink and that felt better for a few days.
I’ve tried to get to a home in Elizabethtown, PA (where I went to school) (also the original homeplace of Jon & Kate + 8) but either the doctor or the home isn’t cooperating. Not sure now how I would get there anyway. Last year when I started this process I figured I would cross that bridge when I came to it.
I will do my best to keep the PLM site updated when I can. You can of course send me an email and I will reply as long as I’m able.
For those who knew my family, here’s an update: My mother passed 11/9/04, 10 days after my brothers and I visited her and after a very serious operation. My sister Dara was the executor of her estate and except for one phone call in December of ’04 to try to clear up some confusion regarding her will, this was the last time we spoke. I’ve tried to look her up since then with no luck. My brother David and I have not spoken since last summer. I still don’t know why. I haven’t heard from my oldest brother Dane in almost two months. In ’05 my brother Dave and I kept Dane in his apartment for 4 months after he lost his job. The first time he tried to give me money, I told him to not worry about paying me back until after he was on his feet. Over the past year he has slowly stopped dropping by after assuring me that he was going to visit his disabled brother every day he could. Why both of them moved to Indiana is a mystery to them as well as me. David never had a girlfriend here that I knew of and except for last year, Dane hadn’t either until he met this girl who is several years his junior. Before that he was married a few years to a Korean girl who said she just used his Navy connection to move to US and become a citizen. It’s like that sometimes I guess.
For those of you who have kept in touch using Facebook, I don’t use that any longer. The simple reason is that I feel this site is more for family stuff and upbeat banter. That just isn’t me anymore.
I haven’t spoken much about my religious leanings since I don’t attend a regular service anywhere. I don’t feel this makes me a good or bad Christian. It doesn’t mean I don’t believe in Jesus or God because I do. I just didn’t feel the need to reaffirm that belief each Sunday. I just didn’t seem to get out of each service what others seemed to. As I didn’t feel what they did I figured I would be hypocritical to attend and not share what they were sharing. I’ve actually attended quite a few services from a lot of faiths: Christian (Baptist, Methodist, Protestant, etc), Jewish, never tried Muslim, Buddhism, Hinduism or other European/ME types, although I met quite a few people who were good who did.
If I brought some joy or relief to your lives, this should be my legacy. I hope I haven’t been a burden or disappointment to anyone during our journey as this is definitely not the impact I wanted to have on anyone.
Gee! This was meant to be a short message but I guess given the chance I’ll blather on. I may send another communiqué god permitting.
Feel free to use this address to communicate or text me on my cell (max 160 characters).
Take care!
Drew (DCal/DrDOS)
I started bowling when I was about 4 (I’m told) and had a pretty good league average (>190) too. I never bowled a 300 in a league game but my father had a 3 foot (or so) trophy when he did. I remember my oldest brother even had a 300 ring. I did bowl one in practice (and got a printout to prove it) but I was alone at the time. I have bowled 299 once or twice and maybe a 298. I remember it had been a few years since I bowled (I was about 25). I remembering getting a printout too. It would have been fun if I could’ve somehow channeled my raw talent and made something of myself on the PBA tour. But no equipment, not practicing and no hope of a sponsor kind of put that on the back burner. It may not have even been on the stove or in the kitchen.
When I worked at Crocker Bank (CNB) I was invited to an event that involved a lot of CNB employees. Since they were all over the state, it was quite a turnout. Not sure the numbers but there were trophies and a dinner afterwards. One bright spot that did occur is that I won a trophy and for me it was more of a fluke than anything else. I don’t recall what my 2nd and 3rd games were but my 1st game was with a house ball (probably a 14 or 15 pound ball that I just rolled straight down the middle), house shoes, and a laugh every time I got a strike. My total was what I got the trophy for but I got nine strikes in a row, 9 spare, and the last one was a strike. All totaled I got a 279. I think that may have been my highest game in quite a few years too. It sure was a lot of fun.
I started going to C-S in kindergarten. I don’t know if it was at the beginning of the year or not as we had just moved to 292 Kent Road from East Lansdowne. I don’t remember much about where we lived there except we had to squeeze somewhat between houses to get to the next street, or maybe this was the preferred way for a little boy.
I remember my first day walking to school (I lived at one end of a long street and it was at the top of the other end). I had my mother’s left hand and I was swinging my other one. When I neared the street to cross to the school, my left hand brushed against the thorn of some lovely rose bushes growing at the edge of one of the yards. It was my first experience with a rose bush and maybe it was so memorable. I never did look into who lived at that house but I never held a grudge against them or the bushes and even grew some years later when I purchased a home in Indiana.
I don’t remember much about the first few grades. I do remember having a lot of fun at recess, finger painting and eating lots of that white paste you’re not supposed to eat (but doesn’t really hurt you, right). I just remember what happened in the third (but my brother swears it was the second).
I don’t remember the boy’s name (or even his face) but for some reason we were fighting outside during recess. When recess was over we decided to continue this fight in the classroom. I don’t remember either of us landing any blows either. The next thing I do remember is someone put out their foot in front of me and someone else pushed me from behind. What happened next is my mouth came into contact with the floor. I don’t remember the initial impact but I wasn’t in immediate pain even though I know I had lost a few teeth. I went to the principal’s office and the rest was sort of a blur. I did eventually go to the dentists when one of my parents showed up but don’t remember what happened to the other kid or if either of us were in trouble.
My next memory was in 4th grade and my teacher was Mrs. Needley (I think we called her Needle Nose). She was a smart and from what I could tell a good teacher. How she earned her nickname was never shared.
The next year was the 5th and I had the good fortune to get the only male teacher (Ok. Except for the crush I had on Miss Lowery (3rd grade) they were all good in their own way except for Mrs. Mast who seemed more concerned with stealing a chip from your lunch or a nip from a bottle (Bourbon or Sherry?) she “hid” in a desk drawer) who was Mr. Kushner. All I really remember about him was he was very smart, knew how to reach his students and one of his hands (left?) was deformed (I heard it had never matured from an infant’s hand) so he kept his hand in his pant or jacket pocket. And the other thing I remember that happened to all of us that year was JFK was assassinated. I just remember being in his class when we got the word.
I don’t remember the name of my 6th grade teacher but I do remember her being the most “mature” of all my teachers (age and wisdom) and she made a good impression on me.
Just going to put some examples of what I see most every day.
Weekly Shower Stool and Clothes
This is the stool I use each week when I take my shower. Usually these towels are all folded. After almost two years, I think this may be the first week they were not. I will try to post what this usually looks like.
An Almost Daily Surprise
Since Bert and Alexis have moved in, an almost daily deposit is left to be cleaned up. Once in a while one of the cats will do so also but I figure that what was once done 2-3 times daily is now done about every other day. Even for one cat I would pay attention to their litter. For 3 it is a real need. This particular surprise was left there for about 12 hours even though everyone else had walked past it including my caregiver who was there to take care of me at not this. I even rolled in some once and I did get help from my current caregiver to clean the wheels off. Fortunately for me she was willing to do that.
Things seem usually to be put in a place with little consideration as to whether they might be blocking my way. I have to either move it or figure out how I am going to get around it. I don’t get around too much. Bathroom, kitchen and back to the couch is the extent of my travels. Dirty clothes hamper, soda cases, dining room chairs not pushed in, trash bags and other miscellaneous stuff are all challenges I have to circumnavigate.
How the bathroom door was and is usually left
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I also have to swing open the bathroom door further since I need to get my wheelchair by the door and if it isn’t open I just scrap the door as well as the jam. The pile of pads are a new thing but the door not open is the norm. Here’s what I did with those pads. Seemed like a simple solution.
Just by moving those pads, now I could open the door further.
I take Rolaids when my stomach is upset and it’s been happening more frequently. I keep them on the small table I use for eating. Molly accidentally knocked them off onto the floor in front of Stephanie.
It sure seemed like a fairy tale come true. Not too good to be true, but the way I thought a relationship between a man and woman would be if they truly loved each other. I always worked under the assumption we were on the same page. It didn’t seem made up and was reinforced each day. Something like you’ll see here:
http://www.suzanne.tv/show.aspx?sid=697 (video might play automatically, but work with it if you need to)
Was I naive? It seems so. I guess I wanted to believe too much in what I thought we had. After all, we were friends right?
When we moved to Westfield, she said she didn’t want to have sex. She felt fat and not attractive. Well, I didn’t marry her just because of sex so I said I understood. On several occasions she said to me that she wanted to be a “Carmel housewife” but that never happened. (Probably something like a Stepford wife.)
I had always preached to others not to be gullible. I guess I didn’t follow my own advice.
I think we all can commiserate with others about where we were when certain events happened that either affected our families, our country or even the world. Here are some that I remember:
