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By jcoff012 On 2013.01.02 23:48
Please respond.

I have spent over two hours reading and rereading a great many topics and posts. Some are awesome responses, some are questions which are genuinely written from fear, especially fear of the unknown.

So, as we travel down this path, would you please share some simple advice? I firmly believe in positive reinforcement and who better to help all of us, than those who are facing PD.

What works for you? Would you share a story of joy or unexpected good time(s)? Do you have a special moment you would share that would be uplifting for others who might vicariously need to know they are not alone? How do you get through the tough times?

Al signs off by saying we are in this together. I need a thread of encouragement, of love, or whatever you wish to call this. I know it will help me late at night to read and reread positive messages.

I realize there are times of desperation, but there have to be times of joy, too. Jane

PS. Anyone with kids or grandkids will get a chuckle from this...After loading our 3 year old grandson into the car, he got VERY quiet...then, suddenly, a little voice from the backseat said, "Excuse me. Too much breakfast!" That was it...we have NO idea what happened to bring that on, but...well, imagine what was going through his little brain...lololol

By mylove On 2013.01.03 01:44
Jane -

We're getting married. If that isn't hope, I don't know what else it is. There are good days and there are bad days. He's gotten to the point where he can't work for more than a couple hours before the fatigue takes him out, but he's running down to the wire before he quits totally in two weeks.

We have some family members that are excited about the wedding, and some who think we're too old and worn out to deserve such a thing, but we're going through with it anyway, because we love each other and we want to do it. And after that, we're renting a room with a hot tub for a 'honeymoon' night, even if it's just to fall asleep early in! ;)

I have these unexpected moments of joy all the time. I can tell you this now, because thirty minutes ago I was sobbing on his shoulder because of something a family member said. He's so very good at that. Even when he loses his physical strength I think that will be there. But earlier, after we got dinner in town, he stopped at the gas station to put gas in his rig. I was a few minutes behind him. As I passed by the gas station, the sight of him just drew me, and it struck me what a lucky woman I am. I still get thrills seeing him across a darkened parking lot, wearing his big winter jacket, doing something so mundane as pumping gas. My heart still beats faster when I hear his voice talking to another coworker from down the hall. And a text from him makes my morning.

I still wipe the missed spots from the front of the toilet, so it isn't all sunshine and roses. But even while I'm doing that, I can still see him in my mind's eye, bringing me an iced tea with sugar from town just the way I like it, or building my picture frames for my art, or giving me that smile first thing in the morning while I'm still grumpy from not enough coffee, or one of the other million things he does just because he loves me and I forgive him.

I'm glad to share in this journey with you, Jane, because you sound like a kindred spirit. Let's try to hang on to those good stories too!

Here's mine (and I hope he won't be embarrassed if I share!) This summer we went out on our little fishing boat on the lake. It was during the hottest part of the month, and we'd had several days of above 100 degree days. We got the bright idea to take the boat out and go swimming. Even though I can't swim, I've always absolutely loved to get out in the water and paddle around.

So we picked a spot, dropped anchor, I put on my lifejacket and stood at the side of the boat, trying to decide how best to slip into the water (there is no ladder) without dunking my head underwater (since that's the WORST). I was in the middle of a very long soliloquy about whether I should sit down and dangle legs in, or if I should turn round and scoot off the side, when all of a sudden, a hand pushed me right in the back and I went off like a cannonball! There was a huge plume of water and a plop and under I went.

I came back up spluttering like a wet cat with my hair in my face and the lifejacket up under my chin to see his worried face hanging off the edge of the boat. He fished me over to the side of the boat and said "Oh my gosh... I didn't know when you said you couldn't swim that you meant YOU COULDN'T SWIM!!" :)

By jcoff012 On 2013.01.03 18:12
My love, you really made me laugh, and, yes we will become even better friends in the future. As you will see in another post, I have a feeling I am going to appreciate laughter even more now.

Good for you, getting married! GOOD for you! Have a date? And, pardon my French, but to H$** with anyone who says anything negative!

Life is too short.

I will stay in touch, promise. Jane

By mylove On 2013.01.03 23:08
Yes - actually, two weeks from now on the 19th, which would make it almost exactly a month from when we decided. Never let it be said we're not decisive when we need to be. LOL

It'll be small, just family members and one or two close friends, but that's the best. It'll also be a week after he quits work for good, and our daughter moves into her own house this week as well, so - lots of changes in a short time!

I second your sentiment! :) This may be a new phase in life, but we're going to find a way to enjoy it.

Michelle

By jcoff012 On 2013.01.03 23:53
Michelle,

This is so very odd a coincidence...again, we are destined to be friends...Our daughter who died had the middle name Michelle! Spelled the same, too! ;)

I will mark my calendar for the 19th. I am in Northern California, so that should be a good day here, but it could be rainy, too...

More when we get home Saturday; going to visit our son. Jane

By LOHENGR1N On 2013.01.04 00:18
Well You asked for it!.....this pales in comparison to what others have going on and Congrats btw! (about time you made an honest man of Him!).

I don't know how joyful or uplifting this is but many of you know I had to replace my service dog awhile ago. I ended up getting Tessa my new service dog. Along with being a companion and helper when you get one you get a working service helper and dog. We can't forget the dog part. In the 16 or so months I've had Her Tess has grown up. She's bulked out to 158 pounds of lapdog or at least she sometimes thinks so. If you've never had a 158 lb Great Dane back up and plop down on your lap you haven't lived! Talk about being put in an instant "timeout"! Heaven forbid if I want to get up, ...."come on Tess move" she truns her head and gives me her are you kidding look ...I just got comfortable and you want to move now? Her eyes relay to Me. "Yes move" now it is amazing how she can move in slow motion.......slowly inching her butt up in hopes of me saying okay I was just kidding...NOT. Sometimes I lay on the floor writing out checks for bills ....Tess comes over gives me the once over pauses......then licks my head! Right on the top where the hair has thinned! Guess she wants to show me how much of her tongue I can now feel on the bald spot! Thanks Tess! She still will sneak up and try to lap the water out of the mug I have on my night stand for morning pills if she can! It reminds me of the old Dennis the menace cartoons in the paper "I want Bathroom water this is kitchen water! I'll live with that, I'm not lugging her water bucket into the bathroom to fill and then carry it out in the kitchen...She's spoiled enough with out that.

Sadly Tess is a bed hog at times too. I did say she's 158 lbs but they are slim pounds she's not chunky by any means so she can really s t r e a c h out. She's gotten better though about hogging the bed. when she's sprawled out taking up all the room she can She's now to my knowledge fallen out of bed twice (hehehe) She'll be laying there snoring away .......roll over and poof! gone for sight...plop on the floor! (hehehe) Then her head pops up with a half startled half accusing look on her face......bawhahahaha! But I wouldn't trade her for the world! That's a peek of life here. Sometimes I provide the humor and head shaking and sometimes She does. That's how We get by if we couldn't laugh and do stupid things once in awhile well.....I don't know what I'd do. When things get bad just try to remember it could be worse you could have a smart alack like Tess or a smart Arse like me around! .

By jcoff012 On 2013.01.04 10:19
Al, I now have another picture of you in my head! Lololol NOT the simply courageous, wonderful man we have come to know, but a man controlled by a Marmaduke! Lolol

Thanks for the laugh! Love and hugs. Jane

By lurkingforacure On 2013.01.04 13:05
Oh boy, congratulations to michelle, that is wonderful, I am so happy for you both:)

As for Jane, what helps me a LOT is trying to remember that if I had PD, my guy would be right there. In fact, if I am really honest, and this is hard, I think he would be a better caregiver than me, even though he's a guy (no sexism or offense intended). He wouldn't be as good a single dad as I am a single mom, but in terms of one-on-one caregiving, I think he'd outdo me, and that's mighty hard to admit.

The other thing I try to remember is that no matter what, I do not want any regrets. I didn't have any regrets when my mom died, and there is no more comforting feeling in the world when you have lost someone than to have done the best you could have.

I read a post from a caregiver long ago who was having a really hard time because her husband, who had PD, had admitted to her that if the situation were reversed, he would have left her. And he was a physician! How hard would it be to take care of someone who you knew would not do the same for you? Things could always be much worse, so I try to keep that in mind as well.

Hope this helps, some days it's just really tough. We all understand. Hugs to you:)

By LOHENGR1N On 2013.01.06 00:17
After some recent posting's I thought this might help Although it is very simplistic I think it is good and can help keep our bearings when any disease like Parkinson's happens. Any disease that pulls the rug out from under us. As I said it is simple and while it doesn't take into account the clinical aspects of depression or anxiety (unbalanced chemicals in the brain) at times we need to step back the tongue twisting, complex terminology and think simple.

This was posted by a friend on my facebook wall the other night;

"If you are depressed you are living in the past.

If you are anxious you are living in the future.

if you are at peace you are living in the present" - Lao Tzu -

We should try to live more each day in the present. To think about pre-disease, our plans and hopes we are depressed. If we think about what's in store ahead we get anxious, our time is consumed with planning, re-planning and but what ifs.When we take each day as it comes, each hour, do what we can at that exact time, live in that moment then we find peace or at least as close as we can come to peace.

It's not much but it beats living angry and depressed over what might have been. It beats living fearful, scared and timid about what might happen next. To live handling each day as it comes, each trial and hardship in it's time is our best choice and really our only choice. Be good to each other, We're all in this together.

By jcoff012 On 2013.01.06 11:14
Al, thank you. I agree wholeheartedly, and have said so in many posts.

I am sad we are all here because of PD, but I am even sadder that I cannot take this disease away for even a day for you, my husband, and any others. But, as you say, we shouldn't bemoan that which we cannot change.

I agree. Live in the present and make the best of it. I really don't see a point to being angry or depressed over the future. No one ever gave us a promise of an uncomplicated future. Am I/are we sad that we cannot do everything we want in the future? Of course, for a moment. So, then, we alter the future and make new plans. Instead of taking at least one final trip to Hawaii, we put it off til May so that he can regulate his meds and his pain. What if we don't get to go? Well, we will make other plans, and we will do something which he CAN do...

Will we never have bad days? Of course not. But, we/I step back and think 'what would HE do if this were me?' And, I already saw him at his best, when I was at my worst. It was humbling for me.

When we were 18, love was possession, frenzied passion, all consuming, jealousy, and overwhelming lust! Now that we are almost 65, it is passion tempered with time, an important part of our whole makeup, and there is often lust, but that, too, is fleetingly wonderful at times. Would we go back? I doubt it, for with all we have been through in life, and now PD, our lives are richer. Not the lives we planned, but the lives we were given...and we will do our best to have as full a life as we can.

As Al has so eloquently said before, we, as caregivers will have a life AFTER PD, he and our PWP will not.

My oldest child once said, "Mom, I cannot imagine you without Dad or Dad without you." And, I always tell my husband that *I* must go first, for living without him would be unbearable. And, it will be.

But, while we have each other, we are making the best of it. I hope you do, too. Fight this demon disease, but love each other fully as long as you can. No regrets. Love to all, Jane

By mylove On 2013.01.06 22:07
Yes. Just, yes. We're doing much the same. My email is arabianne1231@hotmail.com, if you ever want to catch up, sympathize, or compare notes. :)

By jcoff012 On 2013.01.06 22:21
Michelle, mine is jane_coffey@comcast.net

Anytime!

By parkinit On 2013.01.12 23:17
Congrats on the wedding!

Al, I love dogs and you dog sounds like a hoot. I used to have a dog I allowed to sleep in bed with me and he would take his paws and try to push me over so he could have his room. He does not get to sleep with me any more. LOL

However, my teenage son and I have done a few silly things with him recently. One is that we howl at the top of our lungs and he runs to the window to try to find out if there is a fire truck or ambulance going by. He looks back at us, out the window, back at us and then joins us in howling. It is the funniest thing and gives us a light, joyful heart. Silly us!

Another is only for the brave at heart. We put peanut butter on our toes and tried not to laugh when he licked the peanut butter off. I know. Crazy. But it made us giggle and forget our troubles if only for a few moments.

My PWP used to bring me a cherry limeade when he could drive and would give me the cherry out of his own limeade because he knew I loved them. He is a dear man who takes great joy in helping others. Even in his illness, this is still his life's quest. I much admire his tenacity and determination in dealing with this illness.

I fell in love with him because of his high integrity, high morals, intelligence and charitable, giving heart.

Thank you for helping me remember these wonderful things about "my guy." We can still appreciate the people they were and remember the lighthearted moments we have.

By oshroshr On 2013.01.17 19:54
I need some threads of encouragement to get thorugh tool The perception of PD is tremor but is is SO much more. Do you ever feel like you are educsting the medical person instead of the other way around? It is amazing. and frightening.

Anyone have DBS and wants to say good or bad?


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