It's been sometime since i've logged on to the site. I felt as though I was plunging too deeply into my disease, our disease. So I've been trying to hide from the reality of it all and carry on with work , home , etc.
Problem is there is no hiding, none that helps anyway. Ignoring the facts have left me floundering. Feelings of inadequacy in all aspects. Beating myself up daily for falling way short of expected performance, again everywhere.
Jupiterjane....you opened my eyes again, reminding me I am not a failure of my own doing. The tears that fall and all that is left undone are not signs of my incompetence, rather a daunting reminder that it is not my fault. If only there was a way to defeat the pain, the fumbling with the simplest of tasks, the lack of focus and energy.
My profound thanks to all of you who continue to be open about this awful condition. You all are a source of comfort and inspiration!.
Godspeed to All
Written by
mccshe
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Good to see you again! I am so sorry you have been going through such pain and agony. I wish there was something I could do to help. Until I sat down and had a good discussion with myself, I also went through the feelings of uselessness, not finishing anything I started and just being a failure. When I looked at reality and accepted that this is the best I will feel, I began to say "no" to people to release some of the pressure on me. When days are good, I garden - my husband has made it easy for me with raised beds and special chairs and my garden is becoming what it was before the PD monster attacked. When days aren't so good, I sit and read or do looming for charity. Even though my body is far from what it once was, I can take some comfort in knowing that there is something creative to do when I feel down.
You are always in my thoughts and prayers. I am sending good vibes your way to help with the pain. Please know that you are not alone. We are all here for you, especially when you feel "down".
How is it that I can always count on you to be uplifting?? Thanks ever so much for reminding me of all the ways "not" to be a drag!!
I think we worry too much over what we can't do, and fail to rejoice over what we can do.
And now that Spring is here, I feel like a little lad again waiting for Christmas so I can do a bit of gardening (I'm no Percy Throwup) but enjoy the fruits of labour with a few flowers and my Onions. I might not be able to dance literally, but in my mind I can.
Does it matter if we dont finish something we start? At least we had a go.
I didn't like losing that hour last night ....but on the brighter side...no pun intended...ok ok... pun intended....I love daylight saving time!
So funny ...who is Percy Throwup? Dying to know.
I have a project that took me a long long time to complete. Would have been an intolerable disappointment had I not . I would like to share it with you...if only I knew how or even if one is able to post any pictures here
I am good. I am very lucky, I guess, The first 15 yrs the progression was slow. It's frustrating because I have about 2 or 3 hrs a day that I can actually go out or get something done in the house. Some days are better than others. A lot of people are worse off than I am, suffering from cancer or other things. I prefer not to dwell on what I can't change. My husband helps.
Considering I have major stress in my life concerning my sons, I am doing very well. About 3 months ago, I developed a tremor in my left hand. For the first time ever.
That's very interesting about your tremor. Very recently I heard of some research that demonstrated PD progressed more slowly for those WITH a tremor. If true then I suppose your PD would have progressed even more slowly than it apparently has.
I am sure we all understand exactly how you feel. I get so frustrated when I am slow. I feel as if I could run, but my body says otherwise. We have to accept that we are not who we were and get on with our lives as best we can. Rejoice in the good days and fight the bad days - though this is not ever easy. I always thought that I would never have bad days, I was the exception to the rule. How wrong I was. Just remember that you are never alone. There is always someone feeling as bad as you do. We must all help each other. Welcome back, by the way.
. mccshe , your post struck a deep chord with me. Like you, I have found that by pretending things are not that bad, I somehow manage to survive every crisis PD throws my way by finding something to take my mind off things. In other words. I have deliberately cultivated a state of total 'Denial' counterbalanced by an equally frantic state of 'Distraction'. Members responses to your frustrations are very reassuring to me ( and more importantly, to you I hope), Life for most of us will always be rocky and fragile and everything we do may fall apart within seconds. However, I still believe there are many positive things in life that we can get involved with. Each of us has a 'treasure store' of things we love and can still do and they need cultivating, alone and with others if we are to remain one step ahead of PD. Perhaps my survival strategies of 'Denial' and 'Distraction ' are not so far off the mark after all. Sorry if I have rambled . ' As a newcomer, I count myself lucky to have found such an uplifting and inspirational community of fellow sufferers. Thank you all for being there and thank you mccshe for raising these issues.
Not rambling at all inkyonion . I appreciate your thougths and it seems we have much in common. All that you alluded to is true and I know it to be. sometimes hearing it from others is just the reinforcement one needs to get back to positivity and loving life.
I agree thanks are in order , but not to me, to you and everyone who has offered their support and insight
I liked the way you said whats on your mind...eloquently.
I don't have much to say today. I'm writing a TV show and one of the main characters has PD. They say, "write what you know," and unfortunately I know PD. I'll tell you all when and where to find my show - when I know. I do want to tell you all that I've discovered an ancient practice that makes me feel less stressed which leads to lesser symptoms. It's called Qi Gong, pronounced Chee Gong. It's been around for thousands of years and it works. I take it for an hour per week at a Cancer Awareness Support group. I had cancer prior to the PD. If it's not given near you, get the DVD from the library or youtube.
wow that is amazing..you are a writer for a television show?? I so look forward to that!
Qi Gong ..hmmm...interesting . thats one I've not heard about . I do beleive i will investigate. I love to swim , if only I could manage my time well enough to get to the pool at my local ymca. I find that is my biggest downfall...managing my time. Procrastination is my middle name. I am filing for a change of name as I type...lol.
Why is it that one health issue is never the case. You must be an incredibly strong person having dealt with cancer. I hope it is gone and stays that way for you.
Thankyou for your comments and for sharing. i'll share your last sentiment by also saying.....
I quit my support group because they insisted on being positive. You know heck with it, I need more often to have someone to cry with and it is a stupid disease and pretending it was a jolly gift just added to the burden. Gift shmift, it sucks. So there!
I quit my support group because they insisted on being positive. You know heck with it, I need more often to have someone to cry with and it is a stupid disease and pretending it was a jolly gift just added to the burden. Gift shmift, it sucks. So there!
Someone shared a link with me...its called the strangest secret. It is a bit lengthy at about 30 minutes. But I found it well worth the time. If you are interested you can find it on youtube by searching those words above (the strangest secret by earnest nightingale...I think that is his name.)
.It helped me a lot to think myself into a better place.
Positive or negative thoughts don't matter too much, Parkinson's is what it is and each of us deals with it our own way. And depending on what time of the day it is whether or not its a gift or something to cry about. We are entitled to all our feelings but I try not to dwell on them because it sets the tone of the day. I would rather try to accomplish something even as I get slower than waste a precious day. I set goals for the week or goals for the day. Some I accomplish, some I don't,I try to set priorities, and go through my day. Whatever it ends up being, i'm ok with it. Today is a tough one, have to drive my hubby to the VA 2 hours each way with tired eyes already. Guess we're leaving earlier than planned so I can take an extra stop. Its for an eye dr appt so I have to drive him home. But we'll go out to lunch and make a day out of it. Have the best day you can everyone!
.I hope this day is a good one for you , you have quite a busy one ahead!! .My husband and I do just the same when it comes time for my neurology appointments. Oddly enough the trip is about 2 hours each way so we make a day of it and go out for lunch or dinner.
.
If you only knew how much I admire you for the way you handle yourself. Setting goals and working towards them with a plan in mind is never something I seem able to do .I muddle through each day with good intentions, however good my intentions are often just that...intentions But all in all things are what they are and at the end of the day...well its the end of the day.
I must disagree with just one aspect....positive vs. negative ... I believe our thoughts do matter. They make a very huge difference . The mind is like a garden. It sows the seeds we plant. It doesn't care what we plant Much like planting the seed of a poisonous plant......it grows just the same as the seed of a beautiful flower planted in our garden.
It is said that we are what we think about everyday. .
...this is merely a phiplosophy. I believe in it. I hope I haven't offended.
May you travel safely today and be well and forgive me if i am standing on a soapbox.
I go with my hubby to the VA several times a month as well - I don't drive as much anymore with the PD bringing about a lot of anxiety in extended traffic ... but the PD meds are great & we, too, make a day of it no matter what the visits or tasks - we always find time for a late breakfast, lunch or dinner depending on the time of his appointments ...
I would like to share some words from the president of our Parkinson's support group in Colorado Springs. He's a very gifted writer and his column in the monthly newsletters often hit home.
...Somehow, I grew up with the expectation that my life had a purpose and I would discover it as time went by. Time went by slowly at first and gradually picked up speed like a carnival ride which twists and turns without any input from me. Suddenly the ride is more than half over and I realize the likelihood of having my purpose revealed to me was an unfounded expectation. I had to face the fact that I was becoming increasingly limited in what I can do because of my health and the chances of making a major contribution to civilization was becoming infinitesimal. I had drawn the short straw in life called Parkinson’s which changed the possibilities for what should have been the best decades of my life. The inescapable conclusion was that my life would fade from memory just as my ancestors’ lives had, leaving only trace records of facts about my birth, marriage, and death.
But then I had an epiphany: It is all too easy to become depressed and blame everything on Parkinson’s or, for that matter, any other health issue, social issue, political climate, etc. Instead we can choose to re-program the inner dialogue that determines whether we are happy or depressed. We have the choice to make our lives consequential, at least in our life time, by how we relate to each other. Voluntarily doing things for others without expectation of anything in return gives our existence meaning and impacts the lives of countless others. Sometimes it is hard to see the positive impact our actions have had and we overlook the purpose that we have unknowingly fulfilled. I did not choose to have PD, nor did I choose to help run a support group, but unexpectedly this has become one of my purposes. A large percentage of Parkinsonians struggle with depression and apathy. I wonder if they feel their lives are inconsequential. How about caregivers whose lives are inextricably changed from the happy, carefree existence they imagined as children and young adults to attend to the needs of their care-receiver? I don’t know that there are any answers to existential questions like these but I believe if you stay engaged in life and think beyond your own circumstances, you WILL have a consequen-tial life, especially to those closest to you. What a tremendous example to others we become when we choose to live the very best life that we can in spite of our circumstances!
The day went great, just tired now. I think the one thing I like about this site is lots of folks share who they are and speak about themselves living with Parkinson's, not just about their Parkinson's. We are all people first, then Parkinson's, then everyone else.
I just read all of your comments. i learned that there are caring intelligent people who are burdened with this disease...and for what end..
The saying, "Nothing happens by accident," is nonsense to me. Life is capricious. Why did I get Parkinsons? If I think back on my life there were times i took mortality and health for granted.
HI I saw the post about hiding, I used to feel that way years ago, I had a very kind women always hug me and tell me how sorry she was for me. One day I whispered in her ear please don't feel sorry for me, If you hug me one more time I may have to deck you! Well, yes a week later I did have to say I was kinda of sorry but then I explained myself. So I decided to educated my community about my disease. I did newspaper interviews, I brought the PD quilt project to the hospital, I started a blog on Face book, telling my friends about what my life is every day. I tell people I'm not looking for sympathy, you find that in the dictionary! Have the best day you can, Don't hide educate! Better days ahead for all us Parkies. ((HUGS)) KADIE57
Hi everyone, hope everyone is having a great day or as good a one as it gets for you. Thinking about it, I guess I try to hide my PD sometimes but it's on an "as you need to know basis". The first year I only told my family and close co-workers. From what I hear now, everyone else just thought I was a drinker. But now not everyone knows, just when I think its important to let them know for my safety and when I just want to see the look on people's faces when they don't know what to say. An example would be at a cashier at a store. When folks in line are getting impatient as I write out a paper check. I first will make a joke like "its the first day with my new hands" and if that doesn't work, I tell them I have Parkinson's and if they want to, they can come up and write the check for me. Lots of times I have cash enough and I just hand the wad to the cashier and say, " take what you need", that's when I really get strange looks and I smile and leave. Usually I try to find the humor in the situation and sometimes I just leave, leaving stuff everywhere. Sometimes I just hide for a day at home, but I go stir-crazy after one day and just have to get out. What funny things do other people do or how do you see humor in our situation?
You are too funny...I love it! My best story of humor was falling at work in front of a number of people. I told them there was no charge for the entertainment. with that everyone burst into laughter breaking that awful silence, you know what I mean.
My coworkers used to think I was just a slacker, and a drinker! Made me mad, but I did get a few apologies after my diagnosis was revealed
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