Jupiterjane's words sir me at many levels. My first poem "Never" has an obvious linage to "I'm Trying" so I thought it an appropriate response. The second, "Our Memory Scaffold" wanders somewhat far afield, and doesn't seem appropriate as a Reply. In my heart, I know it is a response to "I'm Trying", but I can't fully explain how or why. I'll put it in a separate post.
Thanks to everyone for their inspiring poetry and especially to you Jupiterjane....see what a ripple effect your poetry has ...and yes you are honest, brutally honest but I feel you still have so much to offer. I wish you werent so sad, but even your sadness is better expressed to all of us than buried deep inside your soul. There are so many people whose creative talents seem to have exploded since diagnosis. I realize you have always been a poet and maybe thats why you are able to get right to the essence of what Parkinsons tries and often succeeds in doing to us . I still feel there is joy in my life and although some days I have to dig deep, I usually find its the simple things staring me right in the face, that cost nothing such as appreciating beauty in the world around me, having close and supportive partners and/or friends and importantly, my pets ......these things matter. We dont need or have to be 'happy' all of the time but we do need to challenge our darkest thoughts when they threaten to overwhelm us. This sounds a bit like a sermon, but I hope you understand what Im trying to say. Keep writing your poetry, sad as it may be...we are all ears! xx
Poetry seems to be the only way to purge my soul of all the crap disease has thrust upon me. i have been struggling with the words lately, they don't seem to want to come out. I seem to be so easily distracted. Ugh!
Well I struggled to hold back my tears when I reread your poem over breakfast today. It struck a chord deep in my soul. I try hard to stay ahead of the beast but just when I think I'm winning, it sneaks up from nowhere and then the real struggle begins. Some days it's easier to go with the flow and not waste precious energy fighting. I conserve energy wherever and whenever and am always plotting to outwit it. Life sometimes feels like being on a treadmill of never ending short term plans which feed off what little energy remains. My husband normally can't understand why i need to read poetry that leaves me in such an emotional state but today I made him listen while I read it to him and I think for the first time he saw how my tears were releasing some of the pain......my tears were for me a positive outcome arising from your soulsearching into the slow disintegration that faces us . Being the pragmatist he is, he was quick to remind me that we are all disintegrating slowly......I neednt go any further as to how that conversation panned out, suffice to say, I could also see his pain watching me and that seemed to trigger me into a 'checks and balance' frame of mind which Im thankful for. Im very lucky to have a loving and supportive partner who can't do enough for me (sometimes...too much) and somehow together we muddle through the hand we've been dealt .I say 'we' because I know he suffers too and has to work even harder than I do at hiding it. Thank you again for your beautiful, albeit painful poetry. Your struggle to find the words is our gain. Xxx
Now is not the time to be nice or polite. I want to be happy with what's left of my life and my mind. I need to start speaking the words aloud along with the words I put to paper. I am a part of this world and my life is important and what I want is important, now is the time.
Jupiterjane, a reflection of how I feel too, and I suspect many others. I put a brave face on, its kept in my makeup drawer, people remark "you look well", mostly I say "thank you", but occasionally and regrettably sometimes I'm a bit short and reply "I may look well, but it's not how a feel inside!"
Thankyou for sharing your thoughts and feelings, it does help.
I like that,,, sounds like a lot of us,,, some days we want to dig a hole and crawl in to that hole,, then pull the hole closed over us,,, all the time,, asking myself,,, "Why am i doing this." (Again) Life with Parkinson's is amazing,, From 60 to 0 in 1 second flat,,, but the drive is nice most of the time,,, When i feel bad for me,, I look for people that have real problems,,, my problems get smaller,,, Life gets better,, if only for a moment,, Besides,, i enjoy the solitude,, especially when i am trying to remember where i am,, how i got there,, and uh,, o yea,, why??????
You have done a remarkable job of stating so many of my own feelings! Only I'm NOT the parkinsons patient - I'm the spouse that has to watch. I'm also the one that has to selflessly loose EVERYTHING along with you. Only, seldom does anyone even ASK how I am doing.....or offer to help carry the load. They are uncomfortable having you around - so that counts me out as well (Unless I am selfish and try to make a life of my own that doesn't include you). Even our children can't stand the pain so they pull away.
I want to "Thank You"! for being a care giving. You are a wonderful, caring person an I Love You for being there for your spouse. Yes you sacrifice, yes you get scared and worry about your future and wonder where your life is going and when is it all gonna stop! We as Parkinson patients feel all those same thing we just have a very difficult time of expressing it. So even if your spouse doesn't seem to appreciate all that you do for them, believe me they do and I do.
Please find yourself a support group or start your own. Or go hang out with your friends once a week. You need a distraction. I hope you stick it out. The love is there even if you can see it!
Here is a poem I wrote for "My Robert"a few years back.
Hi Jane and I won't put further guilt on you by telling you to have a "Merry Christmas"! There really is NO WAY anyone can say "You have everything if you have your health" until they lose it...as YOU are and those who care about you are! Forgive me for being so slow to respond but I'm new on here and just found this.
Thank you for your kindness and understanding and for helping ME to better understand my poor, sad, once a strong football player and now a tremoring confused man a little better. I wish I was married to you (Ha)....MEN are already so hard to communicate with and seem so totally selfish and demanding....even when well!
Its been an awful week. After a 5 hour drive to Nashville to, once again, visit the man responsible for monitoring our DBS (it was done a year ago and we are neither one "bullish" on it), I have my husband turn to me and angrily accuse me of trying to get the neurologist to have him "committed" because I asked for a few minutes alone to share some possibly early signs of dementia???
WOW, 38 yrs of committed marriage on my part and never ANY action or reaction that wasn't in his best interest and I get this now. Its not the first - the first began when we found that PD WAS the diagnosis and we began to buy foreclosed properties to rent as we knew he wouldn't be able to work long (he is now 59 and has really had it for 8 years). They were put in a LLC in my name at the lawyers suggestion in case we ever needed a nursing home. NOW, I am taking all "HIS" money and then plan to divorce him.
I am a Christian wife, mother, sunday school teacher, womens speaker and lifelong advocate of marriage! I've basically been thrown out of churches due to my strong desire to see troubled marriages survive. O>K>????? THIS doubt and these lies and accusations on his part, added to the loss of the "man of my dreams" seems almost too much to bear. I pray for a transfer truck to take us both out and on to Heaven before it gets so much worse.
He drives, eats, walks, works on our houses at times, but is heavily medicated with neupro patches, stelevo, azilect, DBS, and now celexa. (He also blames me that now HE has to take an antidepressant that may cause sexual problems).
I DO have a mother that prays, cares, and listens. I do have a loving daughter, carrying twins that does NOT need "my stuff" but is there for me. The town we live in has no PD support group except one that has people 20 years our senior - TOTALLY different set of circumstances and problems.
I cannot tell you the hours, the doctors, the books, the "Fighting Parkinsons Drug Free" seminars, coaching, Rife machines, FAVA beans, mucina purens, LDN, and more that I have lovingly found for us to try (he would not even know the name of his disease if not for me) and yet this. Now, there are wonderful times. He is either wanting to cuddle me in his lap or kick me out to the dogpen.....in the span of a day at times.
I'm sorry emptynestantique that I don't know what to say to you to make it all better. It will never be "all better" again! Parkinson's is a Family Disease because it affects the whole family. That strong, handsome caring man you feel in love with years ago is still there, in fact he's got his hands held so tightly on the edge of his life that his knuckles are white. He watches himself being stripped of his dignity, his pride, the disease eating at him telling him he's no good anymore, that You deserve better, that everything he says is stupid, stupid, stupid and not at all what was going on in his heart!
You are a good and wonderful woman that is fighting to keep her Husband, the Love of Her Life, the ex football player alive and well and current in your lives, but unless some miracle happens and I mean ASAP, you are not going to be able to save him. But maybe, just maybe if you give him a clean slate everyday you might grow to love some of the new part and pieces of the man he is now.
Oh! I don't know! I just don't know how to explain. Parkinson's Disease is very scary to live with but being all alone and having Parkinson's is even scarier!
Very well stated,,, When around other PWP,, we tend to relate better to people going through the same problems we face daily... where as, around our own Care Taker,, we tend to stress the fact that ,"There is no way you can understand what is going on inside my head" ,, At least that seems to be the way life is around me,, "Terminally Unique" ,, I know that i have a hard time accepting other people,, My Care Takers have been many,,, I keep explaining "I'm not stupid, I have Parkinson's." ,, My only explanation is,,, "It is all i can do to keep up with what i am doing" ,, It's not that i don't care about other people,, It is just a fact of life,,, when i say,,, "I haven't the faintest idea what is going on,, that means,, I am completely lost. Nothing exist in time or space other then me,, standing,, looking around,,, wondering,, "What is this place,, Who are these people,, and, How did i get here."
The sad part is that i see the destruction i have caused,, but have no power to stop it. I love life, i love my kids and family,, but i have to stay away from then,, except for special times,, Christmas, etc, for breif periods of time. This way i can keep them,, cause if we were to be around each other all the time,, they would despise me, i'm sure. My daughter is the only exception,, she takes care of all of my financial matters,,, Tells me how much money i can spend,, corrects and guides me when i steer off the path,, which is often,,, Other then that,, we text as needed,, she tells me when to be where,, As i blaze my way through life,, staying at any one place only long enough to say "Hi" or "Bye".
So i can Empathize with a Care Takers dilemma,, but for reasons we do not understand,,, Parkinson's people are on a different planet at times.
You are right it is a very delicate line we walk. My boyfriend of 5 years, who I love very much, sometimes just looks at me and shakes his head at my slowness and my need to have things repeated to me. He just doesn't understand how following a few directions can make a complete a total wreck. He often says, "baby, we got to get you better"! Oh! How I wish!
Thanks to all of you who have been inspired by Jupiter Jane's poem and who have contributed their own feelings. This togetherness is the reason why I joined this Community. People care about each other and are so supportive to those whose need is greater than their own..
I am not too bad, though not as good as I was. But that is to be expected, I suppose. Sorry that things are so bad with you. You are such an inspiration to all of us. Your ability to put your feelings down on paper is something I would love to be able to do. How is Claire? Are you able to paint at all?
I have so little energy any more that it is difficult to do much of anything. I do have a painting project I am working on but it is slow going. I was up in St. Louis for Claire's 1st Birthday this past weekend. She is such a happy child! I wish I could see her all the time but they live 4 hours away and travelling is just not enjoyable for me anymore. I'm glad to see you're still around.
I choose not to think of myself for it is impossible not to so many times. But the times that I can I remember the friend who has more pain, more falls, more sorrows than myself and I pray to strengthen him.
For the falls, I remember we live in a fallen state in a fallen world. I thank Him that my falls are less and sometimes full evidence of his promise to care for me. For while friends and loved one of 30 plus vanish He has promised to never leave me nor forsake me. He has promised to bring good out of this for not only myself but for others. I know his promise is good.
I remember the falls have been few considering all things. The worst fall is a memorial to his promise. For what should have been my worst was my least as I fell headlong at a very fast pace. I have a tendency to try and outrun my falls which means I’m moving very fast when I hit. This was a concrete parking lot and I was racing down-hill on this fall. After it was over I stood and looked for the wounds and found none. For in my left hand I carried a Rubbermaid waterbottle that had taken 100% of the impact and scrapes (obvious now on the bottle). Even my fingers which were wrapped around the bottle were protected by the small indention in the bottle. The only evidence I felt was that night when I awoke and found my arm and wrist were sore but the next morning even that was gone.
I remember the man who offered to help me to my car and I told him he wouldn’t be able to yet he put his arm around my waist and carried me without a stumble. The next week two men tried to carry me a few feet and they could barely accomplish it.
I recall the flat tire I got this summer in my van (first in ten years) in the heat of August in Texas. Although I had parked at the back of the parking lot far away from cars to allow room to change the flat a car had pulled up right beside me real close. I told the driver I had a flat and would appreciate if he would move it and he asked on which side and then said he was a mechanic and would fix it for me. I’m 56 and been told I look 46 and workout 6 days a week so this man could not have known I had health problems.
How do you do it, Jupiter Jane - in a few words describe how I feel everyday? I can paint on a canvas but I can't describe in a few concise phrases how I feel. I spend hours trying to do so ( talking to an imaginary person ) but it is usually repeated jibberish. Knowing there are others suffering with PD helps me not feel so sorry for myself , thank you!
Thank you Jupiter Jane and everyone else who posted their feelings. It helps to know that others share what I experience as I put so much effort into being "normal", even when I feel awful. I wish I were a poet too!
read a book on neurodiversity. Everyone's brains are different so we respond to things totally different. Also many people have the feeling of not fitting in. In part it goes with the human condition.
Thanks for your comment JupiterJane. It got me thinking. There are times when I shouldn’t be so concerned about being “normal” in public …like when I refuse to go out with my cane because I don’t want to draw attention to myself, even though I can’t hide the “funny” way I walk in any case. What I had in mind though was when I’m interacting with others at work and have to force myself to ignore all my parky discomforts while trying to interact and respond normally. That takes a lot of effort and no one I’m with at the time knows what I am experiencing.
Lovely poems, lovely people, lovely inspiration and lovely to know I can identify exactly with other people who live like I do fighting each day through this dark haze. (I mean that in a nice way) I cannot understand though, when this disease has the capability to destroy so much of oneself, why it hasn't been given more coverage. It's as if we're just put into a group with a label stuck on our foreheads and left to get on with it as best we can. Sometimes I feel like climbing on some tall building and shouting to the world that they have to stop and listen it could happen to them tomorrow. Let's get it sorted. Why is it taking so long.?. ..think I'm having a bad morning sorry folks just so much to do yet my legs won't come with me . Thank you for sharing....
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more random thoughts....
Poems
Me and my Parkinson's - In My Own Words
Trying requip and 
Still trying to find JOY!
