MY FRIENDS!!!
make friends with your PD, today!
because, you see,
you have it,
and it won't go away:
until there is a cure someday!
it surely is an unwelcome guest,
and a most horrific pest,
but if you don't befriend it NOW,
your life will MOST surely be the PITS, AND HOW!
I know it is not easy, but all you can do is try!
we need to be patient,
for me, myself,
and I!
would you hate me if I said I can never make parkinson's my friend? I cannot, and I spend every moment of my life battling it, conscious or not.
Moving , thinking , speaking, living ,loving , all compromised.
No friend of mine.....no malice intended!
Definition of a friend...Someone that "helps" you through the difficult times in life...Making life more enjoyable.
PD is not my friend.
I wrote this 9 years ago,Its 9 this month since my diagnosis,I wrote this in two parts ,the night before the appointment and the day after diagnosis.Your post reminded me of it
Diagnosis Day.My D Day
A visitor came knocking on my door,
so gently at first I did not hear,
Again and again the visitor came,
each time knocking more loudly than before.
Yes I hear you,
the knocking fills me with fear,
I know I have to let you in,
What will happen when I do,
If I unlock the door is it over to you.
Are you my enemy,
will you be my friend .
can I embrace you,
must I face you.
worry not
of course I do
every time I think of you
Tomorrow is another day
brave I must be
the door beckons me
on the other side ,
you I will see
The deed is done the key is turned,
I want to run away but you wont be spurned
I know who you are,
we have no choice
at last I listen to your voice
I smile
I feel better knowing you
Well said, Purplepixie!
It IS the enemy, but if we don't befriend it we will suffer more! Jesus said "Love your enemies! " It is an unwelcome guest in our house, for sure; (the self, body, etc.), but if you keep railing at it, it only makes you suffer more. It only makes matters worse in my opinion.
i didnt come to terms overnight,I cried for weeks,couldnt say the words PD and telling anyone no way I could.Why because I didnt want it,I remembered when being told,one thought ,was well at least I am not going to die.Then there was the poison they called medication,made me feel it was making me worse,side effects,they dont really tell you how awefull you might feel adjusting to side effects and adjustig again every time you increase your medication.I dont know how or when I got there but eventually I did were talking several years
My thought now on reflection;
The life plans may need a tweek but you are alive and very much have a future.
Remember, remember, The person you are, you were yesterday, but knowing changes us for ever. Who I was and am is a constant, but fear from within myself and changed perceptions all around me and we become to frequently lost in pre shaped Life Outcomes.
We instantly catapult ourselves toward the inevitability of disability.This is the prescribed life outcome .Medicines,percieved support prescribed as care and expected decline The person that you are now a patient a voice,no one noticing or looking and listening, ‘ youve become an illness.’
As an illness life takes on a new sense of urgency . Typically attempting to understand the rate of degeneration with questions such as, “What will I be like in five, ten and fiifteen years from now?” .Thats the real problem,bin the crystal ball,and live dont waste it.
Well said. I'm sure we all identify with what you have written. Encompasses everything about our abilities and disablities. Thank you.
This is just another thing in life we must deal with. I am dealing with it as I can, but I will overcome all my disabilities some how. I have a positive attitude and a strong Faith in God. "PD WILL NOT OVERCOME ME"
GOD BLESS YOU ALL
I consider PD as more of an enemy than a friend.If you have an enemy the best thing you can do is learn all you can about them.This is the way to fight them. Knowlege is power someone once told me ,and its true. The more you know the better you can fight.
Hi Brooke! But we need to make friends with the enemy, even tho it is our opponent. Keep fighting the good fight Brooke! Ii fight it too, every day! Carry on!
Brooke, I agree with you..."Knowledge is the only way to "fight" the enemy"...In knowledge their is understanding and strength.
I was relieved at first. My symptoms were bothersome but I could do most everything until I started getting injuries. Now it's more than bothersome and I'm starting to get p@@@ed! Friend or enemy it's here and the relationship is in negotiation.
Hi PatV!
Negotiation! Yes. A love hate thing. But, if you hate it, it will hate you back...
Keep the faith!
JEG
I am sorry to have to say that I will never accept Parkinsons as a friend. My friends are those I invite into my life. I did not ask Parkinsons to join my life and in my eyes that means it is an inruder and someone I will Always fight.
This does not mean to say that I do not realise that it is a part of my life 24/7 and that I, alone, do not have the power to shift it. I enjoy spending time with my friends, accept their help when I need it and hope I am always there if they need me.
I am afraid that I cannot equate my definition of a friend with Parkinsons. That is not to say that I don't appreciate that we all deal with things in our own way. I sometimes wish that I could feel your way, but I am a FIGHTER for what I believe in.
Please that these are only my views and that I do not wish to offend you.
no offense taken, Court. Perhaps you don't really understand what I mean, and this is no offense to to you! I fight PD everyday of my life, and I am not on any meds- AND don't want to be!!!!
Here is a poem by the 13th century Persian poet/mystic/seeker, Rumi:
THE GUEST HOUSE
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unwanted visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
We have a right to be angry! I am not happy about this guest in "my house", either! And I am fighter as well. But fighting with love for YOURSELF, and fighting THE FOE with HATE, are two different things. I am so sorry that you don't get it. The point is to fight the good fight, not with vengeance. Befriending it doesn't mean LIKING it! I.e we have to make Peace with it!!!!!!!
;-D
Cheers!
JEG
It is not that I don't get what you are saying, I do, it is just I believe we all have to come to accept Parkinsons in our own way. Neither my way or your is better than the other, just different ways of coping.
I am not filled with hate, I live my life to the full and enjoying life, most of the time. My life is very busy so I do not have the time or the inclination to hate anything. I just need to understand all I can about the best way to deal with not only my present, but also my future.
I envy you for not being on any meds, they mess with your feelings, but unfortuntely I need them to enable me to function.
I am sure that we are both coming from the same place and dealing with our situation to the best of our ability.
Thanks for your comments.
Sue
I respect your position, Sue! I appreciate it and perhaps you have been dealing with it longer than me. I am lucky to not be on meds. I could take them, , and I tried last year, but they made me sicker than the PD..So, onward and upward. Thanks for sharing your very real and honest position.
This diagnosis changed my life . I was a professional violist!
Peace! JEG
How life changing that must have been for you. I recently saw a programme about Barbara Thompson who is a professional saxophonist with Parkinsons and she was truly inspiring, but I cannot begin to imagine how you are coping.
One comment I feel I should make is that I came to terms with my diagnosis immediately, probably because I had a cousin with a different kind of Parkinsons. She never asked 'why me?' and neither did I. I think I took my way of coping from her and I still miss her every day of my life.
She and my faith helped me tremendously.
Sorry if I am rambling and I meant no disrespect in my earlier comments.
Sue
I also saw the Barbara Thompson programme and found it inspiring. What also came over was the tremendous support she had from partner and friends and it also implied that their financial position and her fame as a musician was also a great help with regard to treatment.
Like you, Court, I came to terms with my diagnosis fairly quickly, and my faith helps me, too.
Knowledge is power. When I was first diagnosed with PD, I knew very little about it. I just right away thought of a college professor of mine, who had been my favorite teacher, ever. He was full of vitality and had a great career, but later in life was struck down by PD , and is now in a wheelchair and has some trouble expressing himself, whereas before, he was the best communicator I had ever known. So, with that sort of negative image in my mind, I looked upon PD as something I definitely did not want. One of my biggest fears, is to be disabled, and have to depend on others to help me do things. So I feel that PD is my enemy. I decided, because I had many symptoms over a period of years before diagnosis, that had been getting gradually worse, that I would find out all I could about PD so I could help myself. The inclusion of this forum is very helpful, along with my research etc. i’ve learned much more this way, than what the doctor’s have told me, after diagnosis. The more understanding I have, then the more I am helping myself feel better. For example, I’ve found that certain resistance exercises, along with stretching, helps me, each day. Fish oil and/or eating fish, and taking COQ10 supplementation helps me to feel better. No doctor gave me that advice. I got that from my own research. So, by looking at and studying many different studies on PD research and through patient forums, and working with exercises to help my muscles and thinking, I am fighting the debilitating effects of neuronal degeneration the best way I can. Sinemet, taken at regular times, is also, very helpful. So, even though PD is an enemy to my well being, I’m making the best of it by keeping myself in the best shape, physically and mentally, that I know how to do.
IS THERE PEOPLE WITH MILD PD SYMPTOMS
Sluggish lymphatic drainage can make your PD worse
26 years with PD
Driving with PD
