Keith Has a Blog!!!

My wonderful husband has decided to set up his own blog. You can view it at Shaky's World. Whereas my blog deals more my feelings, his (so far) seems to be more storytelling. Of course, both are about our family's life dealing with PD.

So check it out!

Mindless Rambles, Part 2

So I'm sitting here typing away to all my online friends on the La Leche League forum and I just happen to look up and see the several Person to Person Registration Forms from the APDA Young Onset Center that Keith has posted up. They are from other PWYOP that Keith can get in touch with. There is a space where you can list your children and the year they were born. All the kids listed on all of these forms are the same age as me! (snicker, snicker!)

The mail just came. I am expecting several packages. Is it pathetic that I've been waiting for weeks, but I don't want the mailman to know how "desperate" I am for my stuff, so I wait until he goes ALL THE WAY DOWN THE ROAD to get the mail?

When Keith and I snuggle at night, or when I roll over next to him in the middle of the night, I find it oddly comforting to feel the slight tremors on his left side. Is that weird?

The PD Support Group

Keith went to the local PD support group. He had a lot of mixed feelings about it. Keith is always very interested in other PWP. (actually, at one time he avoided them altogether, but has recently changed on this) He wants to know how long since they were diagnosed and how their health is holding up now. I think he is trying to give himself some sort of timeline for how long he has to be "healthy." I don't know why - PD affects each person in a different way, at a different rate. But it's something he feels the need to do, and honestly, I'm pretty interested in PWP as well. So he went to the support group hoping like hell that he would be able to meet others with Young Onset Pd. He was the youngest one there. There were a few people in their late 60's, but most everyone was 70 and up. Of course, there were many younger folks who were caregivers, but they don't count as being actual members of the group. So it's pretty safe to say that Keith felt a bit out of place.

Also, Keith said that the entire group was a little, um, how should I put this? - quiet. When the leader asked the group something all he got in return were blank stares. There wasn't much chit-chat going on. And that's what really got him going.

Keith came home from the group, and even though he didn't meet any PWYOP, and even though the group was a bit dull for his tastes, he did enjoy himself. They are approaching the time when they elect officials for the support group and Keith was considering nominating himself. He was able to come up with lots of new ideas for the group - ways in which to bring in a more refreshed and exciting tone to the overall group. I told him not to expect too much - most of these people had PD for many years, they were elderly and just didn't have the energy to keep up with a new, young and boisterous leader. But I told him that I support him (of course!) if he should decide to do so.

Keith's biggest problem right now is finding others like him. We've gone through several different programs for PD patients, and specifically those with YOPD. But everyone is either way older than him, or is way more progressed than he is. Everyone with YOPD that we've been able to contact was diagnosed years ago. Although Keith's age, the disease has progressed more for them. They just aren't dealing with the same issues we are - raising kids with PD being a huge one. I guess we'll just have to keep searching . . . .

But anyway, Keith has since decided that running for office in the support group is likely not such a good idea. He understands how different he is from everyone else there. He will, however, continue to go to the meeting every month. I'm just glad he's taking that first big step. I hope he continues in this direction because I can really see some positive changes in his feelings about having PD!!

Disclaimer

Keith read through the last few posts and was worried that someone (anyone) might get the wrong impression. So to make him feel better I've decided to let everyone know a few things.

Although some of these posts may seem a bit negative, they are mostly just my own personal thoughts and feelings about PD and the changes that are happening in our lives because of it. Keith and I are very happily married. I think I mentioned earlier that I could count on one hand the number of times we've actually fought. Even recently with all the "personality/temper" issues, we get along great. I am crazy in love with my husband. We have a good life together, and I wouldn't change it for anything.

I also get along great with Bryan. He is my stepson, and I love him dearly. We have never had angry words with each other, ever. As far as I know, there are no hard feelings between us, and I hope there never are.

Okay babe, is that better? :)

For Bryan

Okay, Bryan, this one's for you. And the reason I address this is because I have probably had way too much time on my hands - time to spend thinking about things I should probably just leave along. But maybe not. Maybe this needs to come out. Better now than never, I guess.

On Saturday when we were all at your mom's house I briefly told you about the book/marriage issue (see previous posts) while your dad was outside smoking. You seemed to agree that he was experiencing some memory loss. But there was something that bothered me about our conversation. I heard criticism in your voice, and saw judgement in your eyes. God, how I hope I read you wrong!

But just in case I read you correctly -

I know how close you are to your father. I know how much you love him. And it's plain to see how protective you are of him. You will probably play a huge role with me one day in his daily care taking, should he get to that point. I know that must weigh heavily upon your mind and your heart. But please keep in mind that I am doing the best I can. Just as it is hard for you to see your father change, physically and mentally, it is equally difficult for me to see it. And I see it on a daily basis. Day in and day out I can take inventory of all the changes that occur, even the most subtle. You and I know him better than anyone else - we know what having PD has done to his spirit, to his self-esteem, to his confidence. I need to know that you are behind me, that you support me in the way I try to support him.

I know I have made mistakes. Sometimes I am impatient with him. Sometimes I am short and ill-tempered. Sometimes I am sad. I am always at a loss. I never really know what to do. Things happen and I have a choice - do I respond in a PD way, or in a normal way? It's not always apparent why your father does the things he does, or why he says the things he says. I never know from one day to the next if an issue is PD related or not. I am learning everyday, and it's not exactly the type of school I want to go to, know what I mean?

So please, just try to be patient with me, as I try to be patient with him. We've got a long road ahead of us to travel together. Let's not start disagreeing now.

Personality Changes

One of the things that stood out to me this weekend, during our little tiff about memory, is how Keith's personality is changing. Namely, his temper. I can count on one hand the number of times Keith and I have fought, so this change in temper is really throwing me for a loop. In my last post I didn't go into too much detail about exactly what was said between us, but Keith did get really angry at me during our conversation, which upset me. I am not used to being spoken to that way by him.

Keith has always been a little impatient with the wait staff at almost any restaurant he goes to. He's just a picky diner, and that's fine. But lately it's not just the waitress at Denny's that ticks him off, it's the teller at the bank, the cashier at the grocery store, the loud customer at work, the daycare parent that's two minutes late picking up her child, the man walking too slow in front of him at the grocery store, the man driving in front of him, me, Hailey, etc., etc. . . . . Get the point? At home I have to walk on eggshells around him for fear of saying the wrong thing. When we go out, I am constantly looking for my escape route should he decided to bite someones head off. It came up again just the other night.

Hailey has been saving his money to buy an electric guitar. He finally saved enough, and Keith, as usual, hooked him up. He found a young kid who used to work for him, C, who could give Hailey guitar lessons. Keith told me about all this, then said that he had called Bryan to let him know that he could sit in on the lessons if he wanted to learn to play as well. So I said, "That's great! I just have one concern, though. I don't want to end up paying for guitar lessons that Hailey really wants just to have him left by himself while Bryan and C chat it up about other things." I mean, come on! You have two twenty-something guys who know each other and have similar interests and mutual friends stuck in a room with an eleven year old boy, what do you think is going to happen? You're thinking what I'm thinking, I'm sure. Well, Keith went off! He raised his voice and swore and said to just forget it, that he'd call Bryan and tell him he can't come over and join in. Not at all the calm, easy-going husband I am used to. Not by any stretch of the imagination. At this point I had had enough. I told him off. I put him in his place, so to speak. I told him that I was not happy with the way he has been speaking to me lately. I told him I was not going to put up with it, PD or not. I told him I was tired of walking on eggshells around him, and that I simply was not going to tolerate being treated that way. I half expected a fight, but surprisingly, he agreed with me. He apologized, and everything was fine after that. Sorta.

I guess things are as fine as can be expected. We are not fighting, if that's what you're thinking. But things are never truly "fine" when you see your husband's behavior change so much in such a short amount of time. It's a lot to get used to. I hope I can handle this. I pray every day that God gives me the strength to be the strong one in all of this. I sure hope I can be.

The Memory Game

I have taken the past few days to mull over an incident that happened Saturday evening before posting about it. This one incident has raised several other issues, and I really just needed the time to understand myself how I felt about everything.

After Hailey's basketball practice on Saturday I dropped him off with W, his stepmother, for the usual weekend with his father. While there, W gave me two boxes of children's books that had belonged to Hailey. My mother purchased them for him years ago, so there was a lot of sentimental value tied up in those boxes of books. When Hailey's father and I split up eight years ago I left the books behind, along with almost every single thing I owned. Now that so much time has passed and we have overcome our differences, we are good friends. At this point there is no need to get into WHY I left almost everything behind; just know that I did.

So later that evening as we are heading to C's (Keith's ex, Bryan's mom, and yes, we are friends!) house for dinner, I told Keith about getting the books back and how happy it made me to have them. He asked me why I had left them to begin with. I said, "You know why." I told him that I had basically left my previous marriage with nothing more than the clothes on my back, to which he responds, "I just don't see what would make someone do that." And here is where I have the problem. Keith and I have been together for seven years. We have talked about my previous marriage quite a bit. He knows how and I left and he knows why. My first marriage had a huge impact on me. I brought a lot of baggage to our relationship from that marriage. We have discussed this so many times. SIGH . . . . . .

Naturally, I got a little ticked off with him and snapped, "Well, I guess you'd have to be in that type of situation to really understand why someone would leave a marriage like that!" On the inside, I was boiling mad. How could he possibly be married to me, and after seven years together have no clue as to why I left my first marriage the way I did???? He claims that he really just wanted to know in greater detail why it all happened. But I know better. I know that he just simply forgot.

He does not remember me telling him time and time again. He does not remember all the issues it caused. He does not remember how hard it was for me to work my way back up, starting over from scratch. Or does he?

Memory loss is one of the symptoms of PD, we all know it. Keith knows it too, but he does not want to admit that he is suffering from it. I have seen a lot of short term memory loss recently, though Keith denies all of it. This leaves me with only two other options - 1. he is just getting older, and you know they say that memory is the first thing to go, he he, ha ha, (just kidding) or, 2. he's just a jerk and doesn't really pay attention to what I say. Hmmm, which one? Which one?

I truly feel that Keith is suffering from some sort of PD related memory loss. We have conversations that a few days later he swears we never had. He has special daddy/baby moments with Rielly-Anne that bring tears to his eyes, then can't remember them later. He forgets where he puts things sometimes. He forgets appointment times. I could go on and on. And at one time I did. Not too long ago I pointed out to Keith all the things he was forgetting lately. I told him how concerned I was with his recent memory loss. He adamantly denied all of it. He made all kinds of excuses. So I dropped it. The very next time it came up, I casually and half jokingly made a comment about old age and memory loss. He became very upset. He said I was making him feel old and helpless and deranged, or disabled. So what does that leave? He's just a jerk then, I guess.

My husband is not a jerk, nor does he want to be. He is not old, nor does he want to be. And, although he doesn't want to have it, he has Parkinson's Disease. And right now I am backed into a corner with no way out. So I will play his little game of memory with him for as long as he needs. The next time he forgets something, we will dance around it and just pretend that it really is something else.

Mindless Rambles, Part 1

It's ten minutes to nine in the morning. I have approximately ten minutes before my daycare kids arrive. Ten minutes to get this done. Ten minutes of peace.

Rielly-Anne is still sleeping upstairs with Keith. Rough night for all involved. Rielly-Anne is teething, Keith was restless, I was grouchy. There just isn't enough room anymore on our queen bed for two adults and a 13 months old. Time to start transitioning her to her own bed.

Showed Keith the last thing I posted because I was worried he would read it and get upset. I wrote about thinking things that could hurt him, so I don't tell him, then I turn right around and blog about it where he can read it. But there's no real point to any of this unless I am completely honest. But I wanted him to hear it from me instead of reading it on here.

Seems to be having trouble lately remembering to take his meds at night. Actually, the problem is remembering whether or not he took them. In the morning it's fine - he takes them on his way out the door to work. Then he's got an entire stash of meds at work. He takes those during lunch. He usually takes his evening pills around dinnertime. But here's the problem - he likes to leave his pill bottles out on the counter so that he knows he already took them. But I can't just have heavy duty meds lying around with all the kids here all day, and what would my daycare parents think of that?? So I always put them away in the cabinet, thus causing him to forget whether or not he took them.

Why won't Keith use a pill reminder?? I think he thinks that they are for the very old and/or very sick. I guess he's gotta take a stand where he can, know what I mean?

He is upstairs in bed this morning because he closes tonight. His cell phone has been ringing like crazy all morning. I know it's work calling. Has to be. No one else bombs his phone that way. I get so irritated at the way they call him day and night, every day. I know it's what makes him such a good manager, but come on! He's gotta have a life too!

I hear him stirring upstairs. Guess the baby woke up.

To Shrink or Not?

Kate from over at Shake, Rattle and Roll has just recently posted a very interesting blog about PWP and their Type A personality spouses, in this case, a man. She askes Dr. Carolyn Zeiger, clinical psychologist and PWP spouse, what her thoughts on the matter are. According to Dr. Zeiger:

I would recommend referring the PWP to a licensed mental health professional who is experienced in working with people who have a chronic, progressive illness, better yet, experience with PD itself. The background of the therapist matters because he or she needs to be able to differentiate, for example, PD-based anxiety or depression from that which is psychological in origin. Problems that appear to be psychological can be neurological and vice versa. The therapist needs to consult with the PWP’s neurologist on occasion. The PWP needs to have what it takes to go for counseling with or without her husband's consent. If he won't drive her, find a friend who will. Perhaps, in time, husband will come too if that's what's needed.
Almost nobody with PD that I have met, or their caregiver, is in therapy. (I do know a couple that has been in therapy for years to deal with each thing as the PD progresses.) At some point, every one of us could use a little help, both PWPs and their caregiver-spouses. I found it enormously beneficial to see a grief counselor to get beyond my overwhelming sense of loss when my husband was diagnosed with PD. Therapy doesn't need to be long term. Just one session did me a world of good.
It would be good for the support group to create a list of qualified professionals, both neuropsych and grief counselors, (as I did for ours), and give it to everyone in the group to have in their "PD Survival Kit," so to speak. The list is right there if they need it, and they don't have to ask anyone, to publicly reveal their distress, to be able to get help.
Your friendly neighborhood shrink and PWP spouse,Carolyn
Carolyn Allen Zeiger, Ph.D.Clinical and Health Psychologist

So this really got me thinking - should Keith and I really go to a therapist? Do we really need it? I have said for months now that Keith and I could both benefit from some type of therapy in regards to his PD. I especially think Keith would benefit from it. I am still not convinced that he does not suffer from mild depression, and let's face it - it would be pretty depressing to be diagnosed with Parkinson's Disease. Even if he's not depressed I just think it would be a good idea to be able to talk with an objective individual about all the emotional issues that stem from having PD - fear, anger, sadness, stress - I could go on and on. There have recently been several issues that have come up where I truly did not know if it was PD related or if it was just Keith being Keith. So the idea of having a therapist with a background in chronic, progressive illnesses, as Dr. Zeiger suggested, really appeals to me.

Keith and I are usually very open and honest about everything, especially his PD. But there are times when I just keep things to myself, and I'm sure he does the same. I know we both worry a lot about the future. We stress over money and health insurance and who will take care of him and the kids if something happens to me. He tells me about his fear of not being able to enjoy life, of having to rely on everyone else for the simplest tasks, of not being around to see grandchildren one day. I tell him how difficult it is to watch him go through all of this, to see his strength decrease day by day, to see him choke or stumble. I have all the same worries and fears he does. But sometimes I just keep things to myself. For instance, a few nights ago Keith offered to wash the dinner dishes for me. There weren't that many and I'd had a hard day, so of course I agreed. I went upstairs with Rielly-Anne to put her down for the night. As I'm lying there nursing her to sleep, the entire time I'm thinking about how glad I am that when I go back downstairs the kitchen will be clean and I can actually relax for once.

An hour later as I'm making my way down the stairs I hear the water running in the kitchen and the unmistakable clatter of dishes being washed. I immediately got mad. The first thing that came to my mind was "What the hell is taking him so long? PD my ass. He just sat on HIS ass until me heard me coming down the stairs, now he's trying to hurry up and get them done!" Yes, that's what I thought, I am ashamed to admit. But then I saw him standing at the sink and everything changed. He was stooped over. His left leg was shaking. His shoulders were stiff. His left arm was stiff and had been carefully place in the sink. A plate had been very carefully placed in his left hand. He was struggling to hold on without dropping it, while trying to wash it with his right hand. His entire body was swaying lightly in almost every direction. He looked up when he heard me and said, "Almost done babe. Just got this plate and the silverware left to do." At that exact moment I wanted to sink right through the floor. I was clearly very wrong. Yes, it was the PD that kept him from doing something as fast as I thought it should be done. Not only did I feel like crap for having those thoughts, it just broke my heart to see him standing there like that struggling with something as mundane as washing the dishes.

I never told him what I was thinking when I was coming down the stairs that night. But there have been other similar instances. I don't want to tell him these things - I just don't think he needs to know that sometimes I get really impatient with him. But I do think it would do me good to tell someone. So maybe a shrink is in order after all?

I would love to be able to get Keith to one, but the way he is I just don't see that as happening anytime soon. I did notice, though, that he has marked on the calendar when the next PD support group is . . . . .

My Pregnant, Hormone-Induced Reaction

Ha! Ha! Gotcha! No, I am not preggers (not yet, anyway). I was actually thinking about my reaction to Keith's diagnosis. I was very pregnant with Rielly-Anne at the time. My reaction was not one of initial shock, nor could you call it depression or denial. We did suspect, afterall, that he had it, so it was really just a matter of making it official. Still, there was a seed of hope that just maybe he really didn't have PD. The neurologist sent him for all sorts of tests due to the possibility that his symptoms could have been the result of a minor stroke, or something similiar. So through all of this I held out hope that it was something much more simple.

After the official diagnosis, everyone in Keith's family rallied around us, offering support and help in anyway that was needed. Keith's brother has PD Plus, or MSA, and is in really bad shape right now. The entire family knew all too well by that point what PD is capable of doing. They were very supportive. My family - well, not so much (so I thought).

I don't want to put my family in a bad light. I don't want to make you think they are indifferent, or that they don't care. That couldn't be further from the truth. It's just that, unlike Keith's side of the family, they had never before been in contact with a PWP. All they knew is what they saw on t.v. of Michael J. Fox and Ali. So all I got from them was "Oh, that's too bad." That's pretty much it. Now, had I not been pregnant at the time, I would most likely have seen the situation a little more clearly. But when you're in your third trimester of pregnancy and feeling like a chronically fatigued beached whale in the midst of constant pms, you tend to get a bit emotional. And emotional I did get. I sent out an email spouting off a bunch of angry, poor-pitiful-me rhetoric, and I said some pretty nasty things about some of my siblings. In return I got, among other things better left unrepeated, "We aren't going to hold his hand and baby him and make him feel like an invalid!" and "What's the big deal? Michael J. Fox has had it for years, and he's going just fine!"

Two things became very clear to me at that point -
1. Some of my family members truly did not understand PD and how if affects a person, and it was my job to enlighten them, rather than get angry at them.
2. Some of my family members truly do understand PD, and truly are concerned about Keith. It was important to them that they not do or say anything that would strip him of his dignity and pride.

My family has been very supportive of Keith and I in our journey through PD. I have made it my place to inform them as much as I can. And we are both eternally thankful for the love and support we receive from both sides of the family. It would be so difficult to get through all of this without them.

Stem Cell Research

Well, it was bound to happen. I knew it would rear its ugly head sooner or later. And last night it did. Keith asked me "If they found a cure for PD using embryonic stem cells, what would you do, or have ME do?"

Now I must give you a little history. I am very pro-life. I do not believe in abortion, nor do I believe in in-vitro fertilization, therefore, I do not believe in embryonic stem cell research. I believe that life begins at the moment of conception, whether it is in the woman's body or in a test tube. I believe that no one, under any circumstance, has the right to take another human life. As far as stem cell research goes, whether or not these embryos are leftovers from in-vitro or "discarded" from abortion varies depending on who you ask. Some would say it's fine to use leftover in-vitro embryos as they will be discarded anyway. Others say it is okay to use aborted embryos, as they have already been discarded. The argument is that a lot of good can come from the use of these embryos, that lives can ultimately be saved, and isn't that itself pro-life? Well, maybe, in a round about sorta way. But in saying that any good can come from destroying a life only legitimizes it. I can not and will not support any means that can and does legitimize abortion or the destruction of thousands of living, human embryos.

So back to Keith's question. What would I do or expect him to do if they found a cure using embryonic stem cells? I would remove myself as much as possible from the situation, meaning I would not, I COULD not, make that decision. I could never willingly tell Keith to "go get cured." I could never consciously agree to or endorse something I wholeheartedly disagree with. But I do know what Keith would do. He would be the first in line, understandably so. And yes, I would be overjoyed that my husband had been cured. I would be ecstatic at the miracle of another chance to live a "normal" life. I would be forever grateful. But it would be extremely difficult for me to reconcile the two. It would put me a very awkward position - being happy that Keith's disease was cured, but at the same time being really sad about how it happened.

I stand by my husband no matter what. I know what he would choose, and though I do not agree with it, I do support him. It was not easy to look my husband in the eye and tell him that I do not support the research being done that could very likely cure him. But I'd have an even harder time telling God that I support the destruction of the human lives HE created.

Finally, A Breakthrough!

For Christmas I bought Keith the book Lucky Man by Michael J. Fox. Keith is a huge Fox fan and since most of the book is about his struggle with PD, I thought Keith would really enjoy it. I also had an ulterior motive. Fox is very upbeat about his battle with PD. At one point in the book he writes, "This was the lesson: it wasn't for me to fret about time or loss but to appreciate each day, move forward, and have faith that something larger was at work, something with its own sense of timing and balance." I was hoping that Keith would pick up on this and snap out of his depression/denial that he swears he doesn't suffer from. Lo and behold! It worked!!!

Keith actually highlighted that quote in the book. He suddenly seems genuinely interested in taking charge of his health, of PD. He's called our local support group. He is making preparations to start his own support group for early onset patients. He has ideas on how he can integrate that group with a weekly aquatics class. He seems to have found his strength, finally. He is optimistic, truly optimistic for the first time since his diagnosis. He has a new spring in his step. He is finally ready to fight.

I pray that it lasts. I am so thankful that he has finally gotten to this point, but I worry that it's just a high he's on from reading Fox's book. Okay, Mary, stop! Who's the pessimist now? Time to just be happy he's where he is and just move on . . . .

Children's Books

I've spent the past year looking for children's books about PD for Hailey and Rielly-Anne. I came across a great one - I'll Hold Your Hand So You Won't Fall, by Rasheda Ali. From what I can tell it's basically a simple Q&A book for little one's to help them understand the disease better. I think right now it's a bit too old for Rielly-Anne, but also too young for Hailey. Maybe next year when Rielly-Anne is a little older.

Caregivers Unite! But Is It Really For Me?

I have come to the conclusion that the caregivers online forum I am a member of is just not for me. Now don't get me wrong - it is a wonderful site with lots of nice, interesting and very supportive people. But I just don't fit in.

First of all, I am not actually a caregiver yet. I mean, Keith can still function perfectly, so I am not exactly caring for him in the typical caregiver sense, know what I mean? To continue in such a forum would be a bit insulting to Keith. Second, I am the youngest one there and have really nothing in common with anyone else. Let's face it, Keith is considered "young onset" to have PD. 90% of PD sufferers are in their late 60's or older. Most of the people on the forum are elderly caretakers whose spouse has PD, or they are middle aged people taking care of their elderly parents. Not really my peers at all. And third, it's a bit of a bummer. Actually, it's a HUGE bummer to be on that site. I went there looking for support - a shoulder to cry on, a little bit of what to expect in the future, maybe a tip or two on how to get Keith more motivated to care of his health. What I got was one sob story after another from angry, bitter family members. One lady went so far as to say that had she known her husband would end up [with PD] then she never would have married him to begin with. That, in my honest opinion, is just a horrible thing to say. Now I know these people have a lot on their plates. I know that they are likely burnt out, but jeez lady!

So I've taken a permanent vacation from the Parkinson's Disease Caregivers Online Forum. Hopefully I will never find myself at home there.

Just So Ya Know

It will soon be obvious that I am posting about a lot of different things in a very short amount of time. I guess I am just trying to catch you all up on what's been going on this past year. There are some new and exciting changes coming up, so read on, but don't get too confused if I have contradicting posts posted on the same day.