Tuesday, April 29, 2008

A Family Divided

After writing my last post about my dad seeing Keith for the first time in full-force PD mode, it made me wonder what he really thinks about PD. I really wish I knew what my family thinks about when they think of Keith having PD, or if they even think about it at all. I know I tend to write more about what my own family thinks and feels as opposed to Keith's side of the family, but that is only because I am very well aware of their thoughts and feelings. Keith's brother is in far worse shape than Keith is, and hopefully will ever be, so they have all been dealing with this much longer and on a much deeper level than anyone on my side of the family. The Lewis family has had PD smack them right in the face. They have no choice but to sit up and pay attention. My side of the family is new to all of this. They have no clue what they are in for.

I know that there are several members of my clan who just don't get it. They do not see Keith everyday so they can't possibly see the changes that take place when he works too hard or is exhausted. It does not affect them in any way, so they simply don't think about it. To them, Keith having PD is just another one of those little facts - like the year he was born or the type of car he drives. Keith is 52 years old, drives a Chevy, has Parkinson's. Because they choose not to acknowledge it now while they still can, they will likely be the ones to deliberately ignore it and shuffle around uncomfortably, not knowing what to say or do when my disabled husband is wheeled into the room.

Then there are those who do acknowledge that Keith has PD, they just don't know much about it. These are the family members who, though they also don't see Keith and his symptoms on a daily basis, are much more aware of the changes in his body because they are looking for them. While they might not go out of their way to get as much information as possible, they never hesitate to ask us about it. They ask about Keith's health, they check on us after a dr. appointment, they are genuinely concerned about us. These are the family members that will likely not know what to do when my disabled husband is wheeled into the room, but they will try to do something - either make a joke about PD to lift his spirits or face it head-on by talking directly to Keith about the disease. This is the group I will likely as not be much more dependant upon if things get really bad. This is the group that will care enough to help.

So, which group do you fall into?

Did You Happen to Notice?

. . . . just how bad Keith looked yesterday?

For the first time, someone other than myself, Bryan and Hailey actually saw the way Keith looks when PD hits full force. My dad was here yesterday and was able to witness what Keith looks like after working in the yard all day. Most PWP know that if they attempt anything strenuous, they are pretty much done for. Keith had been doing a few things here and there around the yard - just little projects that I had given him. It wasn't anything too difficult, but enough to make the average person feel like they'd really accomplished something. It took a toll on Keith.

When my dad showed up, all of Keith's symptoms were exaggerated. He was stooped over more, he was very shaky, he was moving very slow, and his face was nearly frozen in a droopy, saggy expression. My dad never said anything but he had to notice. How could anyone not notice that? I'm going to ask him about it and see what he says. I'll have to post about it - it will be very interesting to see how my family reacts to this disease and Keith as it progresses . . . .

Thursday, April 24, 2008

He Finally Found One!

Okay, so maybe in "Confessions of a PD Wife, 2" I was a little unfair about Keith being physically active. Afterall, he does work some 50 hours a week, and he is very active around the house and yard. He certainly doesn't sit around all day. It has been pointed out to me that for months he has been searching for a good, used exercise/weight machine. So I admit to being a bit unfair about what I previously posted.

The problem has been finding the right weight machine for the space we have available. We have no space available, so it would have to be really, really small, but still have all the functions and stuff on it that he needs. Well, last week he finally found one! YAY!!

It is small, but it will fit in the shop, (and on the porch if he needs to move it there temporarily to work on a vehicle) and it has everything he needs to work his legs and arms. He's really excited about using it!

(stay tuned for the post on whether or not he actually uses it!)

An Exercise In Strength

Keith has always been pretty strong. Even now, with PD, he is still stronger than most of his PD peers were/are at this point. He likes to prove to himself and others that he's still got it by arm wrestling and participating in several other macho-chest-pounding male games. But I noticed something last week . . . .

Keith and I had purchased some baby furniture for my sister. Since Keith had to leave for work, he unloaded it off his truck so that my dad could pick it up and deliver it to my sister's house. I noticed that Keith struggled a bit to unload the furniture from his truck. I don't know that it was an issue of strength alone - I think it was a combination of having become a bit weaker and struggling to get his left hand and arm to do what he wants it to do. So I helped him unload the stuff and off to work he went. Half and hour later my dad showed up ready to load his own truck with everything. At that point, I hadn't even thought twice about helping Keith - it's just something I do. I know he could have done it himself, but I love him and wanted to help, especially since I could see that he was struggling with it. So I asked my dad if he wanted my help, and of course, he said no. Then he quickly and effortlessly picked up both items and placed them in the bed of his truck. It dawned on me for the first time then just how different Keith is from other guys.

Now, I realize that most men don't want to be compared to their fathers-in-law, and it really could have been anyone. My dad just happened to be the available person with a truck that day. But it really hit home to me that Keith's strength is declining. He really does have to struggle more than everyone else when it comes to even the simplest things. It doesn't stop him, but it does slow him down. I really need to make sure that I am available to him if he needs me, but without compromising his dignity. Hope I can pull that off . . . .

Wednesday, April 16, 2008

Confessions of a PD Wife, Part 2

1. I'm really getting worried about Keith's memory, because it seems to be getting worse.

2. Sometimes I set Keith up with situations that require him to remember something just to see if he can actually remember it.

3. I'm beginning to feel that Keith is becoming more selfish with his free time, because he has PD.

4. I feel guilty for thinking Keith uses PD as an excuse to use his free time on his hobbies rather than with his family.

5. I feel guilty for being jealous of Keith's free time.

6. I feel stupid for blogging about how much improvement Keith has made regarding physical activity when he hasn't done one damn thing to improve it.

7. Sometimes I feel I'm the only one in this house who cares that Keith has PD.

8. I resent the fact that I'm the only one trying to get everyone else to eat healthy and exercise when I'm the healthiest one in our family.

9. I don't like knowing that one day I will be in charge of all the vehicles and the maintenance they require.

10. I worry about being in charge of the vehicles because I hate doing anything with a car and I know virtually nothing about them.

11. I don't want to have to learn to mow the grass with the riding mower.

12. I worry that someone will see me mowing incorrectly and think I'm an idiot who doesn't even know how to mow her own lawn.

13. I'm uncomfortable with the fact that we don't have long-term care insurance.

14. It really bothers me that Keith feels long-term care insurance is a waste of money.

15. Sometimes I think Keith puts too much effort into stupid crap like his race car and not enough effort into things that could help him feel better, like exercising or quitting the cigarettes.

Tuesday, April 15, 2008

We Are So Different!

Keith wants a new lawn mower. One of those fancy ones that has handles you push and pull instead of an actual steering wheel. I know they have a name, but I don't recall what it is, mainly because I don't care about stuff like that, so I don't make a point to remember.

He said he can get a small one for "around $65 a month."

"Around $65 a month" is a lot of money that could go towards a gym membership or martial arts instructions, or a personal trainer or a home gym . . . . . all things that would help with his stretching and exercises, which will help with the PD.


Monday, April 14, 2008

Prayer Request

Please find it your hearts to pray for the Brewer family. They are our neighbors and friends, and their youngest son is Hailey's best friend. They lost their teenage son recently. He died suddenly and unexpectantly in his sleep Saturday night. The cause is currently unknown, though he did have a seizure disorder.

Please keep them in your prayers!

Thank you.

Sunday, April 13, 2008

A Lesson in PD

The other day I was sitting here in front of the computer uploading new photos to our family website. Rielly-Anne was nursing, so I had to do everything with one hand - the left hand. As I am right-handed, this proved to be a bit challenging. I was not only using the mouse, but I was typing a few things here and there as well. After a couple minutes it dawned on me - this must be how Keith feels when he tries to type, or do anything at all with his left hand!

Every movement I made with my left hand, whether it was clicking the mouse or typing or even taking a sip of coffee, had to be slow, deliberate and directly planned out. I had to think about each action I wanted my hand, arm and fingers to do. I had to make a conscious effort to move them properly and place them where I wanted them to be, and to click or type exactly how I wanted them to. I decided to take it a step further and try to write my name with my left hand. Most of us have done that at some point, at least when we were kids. It is surprising just how difficult that is, especially when you make a point to observe the differences between the two.

After that, I decided to spend the rest of the day using that hand as much as possible. Every time I needed to do something like get a glass of water, use the phone, brush my teeth, I used my left hand. I was amazed at how fast my entire arm, from the shoulder to my fingers, grew tired. And I was exhausted from the effort and the mental concentration it took just to get my arm to cooperate the way I wanted.

I know I will never fully understand what it's like to have PD. Some PWP are affected just on one side of their body, others are affected throughout. There is a huge difference between that and my experiment with just one arm. But it gave me a very small glimpse into what life with PD is like, and because of that, I think I am much more understanding of Keith and what he is up against.

Friday, April 11, 2008


I found a new site! I think it was Dan's blog that I found MDJunction on (sorry, I can't remember!) They have a new PD support group. It's only been up and running for a few months, so it's currently kinda slow, but I'm hoping to generate a little more traffic on there.

Check it out!

MDJunction PD Support Group

Thursday, April 10, 2008

Working Through "How Long"

Keith recently posted on Shaky's World about the question "how long?" He is constantly worried about how long he has until his symptoms worsen, until he can no longer work, until he is physically disabled. The list goes on and on. Honestly, it really frustrates me when he starts talking this way.

It really bothers me that he wants to know exactly when everything is going to go all to hell, IF it even does. I'm not sure why it bothers me so much - maybe because I can't give him the answer. I don't want to be able to give him the answer to that. I don't want to know the answer to that.

The older I get the more I become the exact opposite of the type of person I once was. Whereas I was once very pessimistic, I am now very optimistic. I was once grumpy and moody - now I am happy and cheerful. (okay, not ALL the time, but I try) And I am extremely hopeful. Hope is what drives me now. It's what keeps me happy, because it gives me the ability to believe in something more. Okay, I'm having a really bad day, but hopefully, tomorrow will be better. The washing machine just gave out, but hopefully, I can get a new one on sale. Keith is more shaky and tired than usual today, but hopefully, it's because he had a long day and not because his symptoms are getting worse.

HOPE n. v.
1. the feeling that what is wanted can be had or that events will turn out well.
2. a person or thing in which expectations are centered
3. something hoped for
4. to look forward to with desire and reasonable confidence.
5. to believe or trust

Because I have such a strong sense of hope, I have no desire to know just how long until anything happens. (well, I really do want to know how long until the laundry can do itself!) I don't need to know. I have hope that our lives will turn out well, PD and all. I have hope that our lives will be full of caring family and friends and love, cheesy as that may sound. I am excited to live the rest of my life, even knowing full well that it could be scary, tragic and sad. You see, it's the NOT knowing how long that gives me hope. It's NOT knowing how each day will begin and end that allows me to believe it will be a very good day.

I give myself a mental picture of the future - like a calender in my head, and each day is a blank canvas waiting to be sketched upon. I don't know what's going to fill up each one of those days, and that fills me with excitement. I can't wait to see how it will turn out! I can't wait to see what the outcome will be! I have so much hope that each one of those blank days will be just as good as today has been. I don't need to know how long until ____. All I need is HOPE. That is enough.

Wednesday, April 9, 2008

Mindless Rambles, Part 3

It's early in the morning, but the clock on this thing is off, so it never shows the proper time when I post. I was up until 1 a.m. messing around on the computer with Keith. Now it's 8 a.m. and I've been sitting her for about half and hour sipping away at my coffee and messing around on the computer some more.

Nothing like a good, hot, fresh cup of coffee!

I set up a Plaxo Pulse account this morning - thanks Darien!!! Every time I try to leave a comment on your blog I get the big, red X and the message that says "operation aborted!"
(????????) Now I can keep in touch with you better!

Hailey's not going to school today. I've got to schedule a doctors appointment for him. I figure I'd better do it this week while Alicia is out. I can take Rielly-Anne and the other two toddlers with me a lot easier than I can take all of them PLUS an infant. I'm really worried about what's wrong with him - tired ALL THE TIME. He's got really dark circles under his eyes and he's always complaining of headaches, especially when he stands up. He says he wakes up in the middle of the night and can't get back to sleep. So he's sleeping in this morning. Hopefully I can get him in to see the doctor this morning.

Alicia has surgery this morning. She's having an issue with a valve in her heart. It's supposed to be a basic, standard procedure and not at all like open heart surgery. We'll see how she does. I'm anxious for her parents to call me later to let me know how she's doing!

Tuesday, April 8, 2008

I Can't Believe I'm This Rich!

It all depends on where you've been . . .

Keith is a worry wart. He worries incessantly over every single thing. Me - not so much. I mean, yes, I worry about his health. I worry about PD and what it will do to him. I worry about all the things that go along with that - how it will affect the kids, do we have enough money and insurance, etc., etc. But I simply don't worry nearly as much as he does. My biggest stresses in my day to day life are more along the lines of worrying about the dishes and laundry piling up, worried that Hailey won't get his science project turned in on time, or that Rielly-Anne will plunge head-first off the sofa. I generally don't worry about the things I have no control over. There's just no point to it. No matter how bad it gets, things will always get better, and we have been blessed by God enough for me to know that the Lord will provide - we will be taken care of.

A few nights ago Keith was venting to me his worries about having PD and what it might mean for us financially in the future. He said, "What are we going to do if it gets really bad? Between just trying to pay for the cable and cell phones and the basics, we're barely scraping by!" Now, Keith says stuff like this all the time, and though I do understand what he's trying to say, and I know it IS a very serious subject, I can't help but laugh. It's just so funny to me that he really thinks we are "barely scraping by."

I said, "We are NOT barely scraping by. Believe me, I've been to barely scraping by, and honey, this ain't it! If we were barely scraping by, we wouldn't have internet, cable, two cell phones, four vehicles, a nice home on the lake, kids who couldn't want for a single thing, and the ability to go out to eat two or three times a week And we are only a year away from being completely debt free!"

"But honey," he said, "we're poor!"

Again, I laughed. "No, we're not!" We just looked at each other for a minute, then we both began laughing hysterically. We are definitely from opposite ends of the class structure!

It's not that Keith grew up rich. He just didn't grow up like I did. There are seven kids in my family. My mother was always a stay-at-home mom, and my dad was the one who earned the living. We certainly weren't destitute, but there wasn't a lot of money to spare. We were poor, but the kind of poor where you don't really know it until someone points it out to you. We had everything we could possibly want, and then some, but most of it was hand-me-downs. Our vehicles were usually used, our clothes came from goodwill. We had to wait until Christmas to get new toys and clothes. Going out to eat was a special treat, but even then, we went to McDonald's. Yes, we were poor, and looking back maybe you could say that we were "barely scraping by," especially if you compared it to how Keith and I live now.

Later, when I married and had Hailey, we really were scraping by. I stayed home with Hailey for a year, but his father only made about $200 per week. Yeah, that's right. Try raising a family on $800 a month. Yeah, we were PO', as Oprah would say. We were poor and we knew it. We had none of the little luxuries that most take for granted today. We lived in a tiny garage apartment, had one vehicle, no cable. We used food stamps briefly before I went back to work.

After our divorce I flipped back and forth between barely scraping by and rolling in the dough, depending on where I lived and worked. But I've never had as much money or as much stuff as I do now. To me, we are rich. I know we are not what most people would consider rich. All four of our vehicles are used with tons of miles on them, our house is tiny and needs fixing up. We shop at the Dollar Tree and clip coupons. We have to pinch and save to pay for our family vacation this year. But still, to ME, we are rich. I have more than I ever imagined I could possibly have.

Keith, on the other hand, is used to having way more. For most of his adult life he has worked in high level sales positions, traveling all over the world, making what I consider to be a TON of money. When I met him, he lived in a condo with an outdoor hot tub, owned a boat, a couple of jet skis, a Harley. He was used to vacationing in the Bahamas and Cancun. So, though I've "stepped up" in the world, he feels that financially, he's "stepped down." Sometimes when I go grocery shopping, he'll tell me to try and keep it down because we only have $--- amount of money in the bank. And I think, "what the hell is he talking about?? That's a lot of money, and he gets paid again in two days!" Not that I freely spend a ton of money - my upbringing has taught me to be very thrifty, but come on! (giggle, giggle)

Yes, it's all on where we've been . . .

Thursday, April 3, 2008

For ME, The Worst is Over

This is a fairly sensitive post, so I need to be very careful how I word it. There are quite a few different people who could easily get offended or hurt by what I am about to post, so if you are one of those individuals, please know that I am only speaking from my heart.

Last week while Hailey was still with his father for Easter break, Keith and I met with Carolyn, Keith's ex-wife, so we could all have dinner together. The conversation turned to kids and my admittance that I had taken a pregnancy test earlier that day. (I am not pregnant, turns out I was just getting sick) Apparently Carolyn didn't know, as most everyone else does, that Keith and I are seriously considering having another baby. And by "considering" I mean that the only form of birth control we are using is a breastfeeding, co-sleeping toddler. Carolyn looked at me with a mixture of horror and grave concern and asked, "Why would you want to do that to yourself after everything you've got piled on you already?" (or something very similar to that) My response was laughing, with "This is easy! After everything I've been through this is the high-life!" I thought I should explain . . . .

I don't want to go into detail and dredge up the past. There's no point in doing that. I will simply say that if I could somehow wave a magic wand and erase my entire life up until seven years ago, I would. Not because that is when I met and started dating Keith, but because that was when I took control of my own life for the first time. I am not saying that the first twenty three years of my life were all bad - there were plenty of good, happy times. But I would gladly give up all those good memories if it meant erasing the bad ones. I know that's a bold statement to make, but for me, it's true. I have been through a lot. I have hit my rock bottom. I have had to work very hard for a very long time to get to where I am today.

I do not want to take away from the seriousness of my husband having PD. I am not naive enough to think it will be easy for us. I know it will be extremely difficult. There are some that would say I have no idea what I am getting into. Some would be rather offended at my (perceived) blase attitude about PD. Still, others would attribute my feelings to being young and inexperienced. They may all be correct, to some degree. However, to put it in a nutshell - I can not believe that the worst part of my life is yet to come.

I can not accept the possibility that what I have been through "in my prior life" was not the worst I have to look forward to. I can not even begin to imagine anything worse than that. For the sake of my own sanity, I have to believe that the worst is over. In my mind, there could be nothing worse than what I have already been through, so it stands to reason that a future with PD is not as grim a life as many would believe it to be. There are few people who can say "I am only 30 years old, and I know that the worst part of my life is over." I know that no matter how bad it gets, it will never be that bad. It has allowed me to live my life knowing that I can handle anything life has to offer. I am strong enough to get through anything and everything. I have been given the ability to see the silver lining of every storm cloud. And I know what matters most in life. I know it's much more about the little things - all those little things most of us take for granted every day.

Having a baby with a man in his 50's who has recently been diagnosed with PD is not what the average person would consider a good idea. But why not? I am in the prime of my life. I am happier than I have ever been. I've got a great family, great kids, a wonderful husband. I feel so blessed in so many ways, and I consider it an honor to be the one chosen by God (and Keith) to stand by Keith and help him live with this degenerative illness, babies and all.

It's Easier for Keith Now

I finally rearranged the bedroom so Keith could get in and out of bed more easily. Well, in reality I only moved two things, but it does help him. I took the old, dilapidated bedside table away and put in its place a very sturdy wooden storage box. Keith used to keep it in the closet to store all his old shop shirts. Now we use it as a nightstand and an anchor for Keith. He can brace himself on it to slowly ease into bed, pull himself up on it, and it's large enough to sit on when he's getting dressed. It has made a huge difference in how quickly he's able to get up and down!

I've Been Away

Okay, not really. I haven't actually gone anywhere. I've just been so busy and so sick that I haven't had much time to blog recently. And poor Keith has been so busy with work and a long list of household projects that he's barely had time to blog either.

We've had a new addition to our daycare family - little Alicia. Alicia has been with us for almost a month now. She is four months old is a little ball of energy and smiles. We just love having her here! Things are finally beginning to settle down, now that we've all had time to adjust to a new little one being in the home again.

Rielly-Anne and I were terribly sick over Easter, and especially the following week. We stayed in bed all day. Rielly-Anne did nothing but sleep and watch her movies and nurse. Thank God for nursing, because that was the only thing that kept her hydrated and fed! Hailey spent spring break with his dad, so thankfully he missed out on all the yucky stuff. And Keith somehow was spared as well.

So we are all mended (mostly) and relaxed and getting back into the swing of things again, finally!