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Topic A different view Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.01.31 00:46
I don't know if this will help anyone or not caregivers/partners or patients, but reading the posts here especially talking about "trivial things". And All are right about the changes in perspective and losing friends or family. Very soon after diagnosis after the shock and being stunned by that announcement "You have Parkinson's Disease" I came to look at people as two types those of us who are terminally ill and those who are terminally well.

We the terminally ill know it, those the terminally well don't realize they're terminal. I began to view life differently to savor every moment and each little interruption in my day. Be it a butterfly, bird, thunder storm, snow storm, dog, cat even the unexpected black bear at the neighbors bird feeder. Flowers well you get the idea. You know like the old saying don't sweat the small stuff and everything is small stuff. Don't get me wrong at times I can get overwhelmed and get anxious but I have built up over the years a think it out approach to the why of those feelings and most times can get them to dissipate. I have Parkinson's Disease do I want it NO but I have it, that I can't do anything about. It will take eventually over more and more of my life and I can't do anything to stop that either. And barring a cure it will kill me (terminally ill) but I look around at old friends seldom seen (terminally well). They aren't any where near happy or at peace. They rage, from road rage to waiting in line to unhappy jobs and family life, they don't take or make time to enjoy everything around them.

It must sound funny someone with this disease talking about being at peace? From the moment of waking in constant movement even sitting down, tremor or fidgeting, Drooling, making faces, falling down stumbling into things? Peaceful? Twenty seven years of it and in some perverse way, some unbelievable twisted reasoning I find myself feeling sorry for those terminally well people! Talk about a bad case of denial.

I'm a big fan of knowledge always urging to read up on Parkinson's and medications. Side-effects an such, I think I've neglected another form of knowledge, the knowledge Parkinson's Disease can teach Us, it's okay to be different now, live with what you have. We're not, barring miracles going back to how we were. We're not going to be like everyone else. How can We expect to be? We have Parkinson's Disease. And it's alright to be "different". Most of us know if we ride a bus or go to a movie or out to eat people stare or look away if not move away. But I think I know some things most don't know. Try going to the park or even in the yard with a bag of bread to feed the birds. You've got your tremor or fidgeting, fumbling maybe getting pieces of bread out of the bag, an unsteady toss......the birds may watch for a moment ...stay back observing but then they see that's the way you are. You're just that way and it's okay with them they'll come to eat the bread. Same with just about any other animal except humans. Nature accepts different. You know what? Smiles will return to faces when we realize this and if PD froze the smiles Your heart will still smile. It's when we can see it's okay to be us, it's accepted by nature then we can see it's not Us it's the other people with the problems greater than they even imagine. It's other people who stay away and don't want to be reminded of being terminally well that have the problems dealing with us. It's them in denial filling lives up with things they don't enjoy just to occupy minds so they don't have to think.

Then anxiety, fear of the unknown know they don't belong with us. We don't know how long we have, we don't know how or what will be affected next but it's okay because every day Were looking for the unexpected, the pleasant surprises and going to enjoy them because it's okay to live life the fullest we can. And Caregivers/partners bring us out to feed the birds too (but let us toss the bread :) you'll find your smile too. Well that's enough "wisdom" from the drugged mind of a Parkie late at night if you made it this far thanks for reading and putting up with me. Take care, best of luck and hang in there.

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By lilflower On 2013.01.31 08:41
Beautiful words. My husband has had Parkinson's for over 30 years now and he is and always will be the funny, strong, caring and loving man I fell in love with. We both know exactly what you mean about two types of people. Over the years we've seen friends drift away. I only wish they had stopped to realize the disease is not who he is that the man is still there. He might be slower, make faces at times, have trouble getting words out and yes I could go on but you know you said it so wonderfully We still love life and all its wonders the sounds of birds chirping in the morning , the sounds of childrens laughter and our own when things don't go just right. Everyday is an adventure some more difficult than others but together we'll take it any way it comes.

By Freespirit On 2013.01.31 09:11
Dear Longhengr1n,

I can't express what your post has meant to me this morning. Thank you so much for this wonderful gem!

By jcoff012 On 2013.01.31 09:19
Hugs and love to you, Al. Terminally well...I love that! Jane

By Liliana On 2013.01.31 14:22
I was really touched by your ‘speech’ today, and admire you and your dedication to this forum. If there was not such a huge expanse of land and sea between us I would like so much to meet you, with Simon.

As you know he has recently joined the forum too, and I am proud that he is no longer in denial and taking some steps in the right direction. I think finally he is beginning to accept that he is ‘terminally ill’ as you so poignantly put it, acceptance is the beginning. I said to him that he just can’t carry on as if nothing is wrong, sweep Parkinson’s into the cupboard and forget it!

He’s only just been diagnosed (1 year ago) it was obvious something was wrong as the symptoms were so strong: hand trembling, limp, rigidity etc. People noticed …. (Before the drugs started having an effect and relieved his symptoms) I said that he should have a T-shirt printed with ‘I’m not nervous I have Parkinson’s disease’, when he used his credit card his hand was shaking so much in my mind I felt like we were credit card thief’s and his nerves were getting the better of him! Especially when he paid the bill, in a really lush hotel or restaurant.

He couldn’t write anymore, pour a glass of wine, use his folk.. he became left handed as he is only effected down the right side.

Well he is symptom free now, no one asks him ‘what’s wrong’ anymore, except me, because I know about the side effects of his drugs, how they are interfering with his mind…and now his new fear (fear of the unknown) is that he will be taken off these drugs which have on one hand given him back his ‘normal functions’ and created, on the other hand ‘abnormal functions’ (if anyone is reading this and wonder what the abnormal functions are I wrote the post on hyper sexuality).

I like that you always say ‘hang in there’ because that is precisely what I am doing.

And yes I want a normal life, and yes, what is a normal life? …….we are just trying to get on with it, and all fingers and toes crossed I think we are stepping over our first obstacle (f*****g drugs) and can try and get on with this TOGETHER!

Thank you Lohengrin, as I said before, you are admirable

By dkleinert On 2013.01.31 17:45
Al you are the BEST! Only you can say it all with such love and eloquence!

By parkinit On 2013.02.01 13:05
Thanks, Al, for helping us "get on with it."

Hugs to you all in your journey . . .

By annieb5767 On 2013.02.19 17:51
You have gained the wisdom of the ages. Lucky you to have this all figured out. You have the right ideas about life. We should all be scratching off our Bucket Lists instead of wasting preious time.

By karolinakitty On 2013.02.21 21:41
Love it Al.....

Jim's pictures of the sunrises, day after day on facebook, are a reminder to me of what he went through in one of his darker moments with PD...we live life now..

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