How Do I Live With This Disease?

How Do I Live With This Disease?

How do I live with this disease? I am constantly asking myself this question as I live my life literally from moment to moment. Like an old broken record it plays over and over, never relenting or subsiding. Without sympathy, it marches down a path preordained by fate. It takes no prisoners, leaving in its wake, the remnants of hope and optimism that I once had in such abundance, when my life's journey begin. I have said it before, Parkinsons Disease is a disease of inches, and those of us who share this affliction earn every inch.

It is not the disease that binds us. What we share in common is PD's sheer relentlessness and its complete lack of forgiveness. It never backs up, and it never gives in.

But the human spirit is strong and formidable in it own right. Maybe it holds the answers to why we struggle, and maybe there we will find the answer to living with this disease.

Jeff Jennings

elcid82.blogspot.com

20 Replies

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  • My question is how do I live, disease or not. Yes it is like the Borg (for the trekkies out there) it tries to adapt, it circumnavigates your solutions and it ever evolves. But heck, I'm better than that, we all are. Out fox the fox, yes. It takes 3 steps I'm taking 10. No one, nothing, no darn illness is going to rain on my parade of life. Bring it on, I'm never never ever going to change my attitude. Ever. Full stop. C

  • Wish I could be as positive as H.H. Know I am lucky, if you can ever be lucky with PD. Take one day at a time. But in my quiet moments the panic about the future returns. I know from first hand experience how cruel this disease can be and then I find it hard to cope. My grandaughters are my lifeline and I must keep fighting because they love and need me.

  • My grandbabies are also a life line for me. They truly give me joy and a reason to smile and feel needed.

  • how do I live with PD? 1 day at a time........some days are slower and some are painful but I am watching my grandchildren grow-up., planning a trip to Italy to se my youngest child marry her Prince Charming, enjoying a new found love after 15 yrs of facing life on my own, enjoying sunrises and sunsets, finding something to smile about each day............no I am not wearing rose colored glasses and I wish PD wasn't a part of my life, but for the time being it is just that ....a part of my life and I am not ready to let it have any more of me. So I WILL live with PD 1 day at a time and be grateful.

  • Awesome words & attitude - thank you.

  • How do I live with PD?

    Well my dx is not solely PD. I also have Dystonia and Acquired Hydrocephalus. And I am not going to gloss this over because you can’t put lipstick on a pig. I hate 27 November 2007. The day my Dystonia-Parkinsonism was announced, just a few weeks from a wonderful week of double-diamond, high-adrenalin action that was why I worked. You would dare me and by the time you finished the sentence I was already half-way through it. I was able to work, but became very ill from it and my firm let me go. My fiancée left me, but kept everything, including the last of my money in the accounts. And the tests done over and over again to remind me that it isn’t happy with just what it has already.

    But I live because of 2 main reasons, which might make you laugh, but I am eccentric. My two moggies/cats. They were rescued from the Cat Sanctuary and have made me shed the anger of what I endure and replaced it with love. I owe them my life, so I am going to be there for them until the end.

    I’m fighting this with what I have, love my friends and some of my family, determined to return to my Marae near Hamilton, NZ, and see my Maori tribe that brought me into their community and appreciate the opportunity to listen to the Chief, telling us of the history, our water, air, earth, mountains, and waterfalls.

    I know it might seem like a far fetched dream, but many miracles are visualisations manifested into reality. You have to push aside the past but dream big. I dream of falling in love. Again, but with someone that takes me as I am, because my heart is gold. And never give up.

    I know how hard these obstacles can frustrate you. Last night I was informed that a friend of 20 years left us after a battle with ALS. I spoke with him 2 days before and joked around as we always have. He was my hero. And relating to us, my great-grandfather, who loved me to bits and had PD lived a full life of 92 years. I’m 45, so I have some time to enjoy life. I’m here for all of you to share, celebrate and, with luck, see us all cured. That sounds bloody wonderful.

  • I am sorry to hear about your multiple diagnosis and what ever it takes to get through the day ( your beloved cats) is great. I have a sister that lives in Wellington and I visited your beautiful country for six weeks two years before I was diagnosed. New Zealand has a wonderful Parkinsons society, one the the best in the world which has been quite helpful for me. If you are not familiar with the society I would be glad to give you the link.

  • I would love to have the link to the Parkinson's Society in new Zealand. Thanks!

  • Hi again, sorry took so long to respond. You can google, nz parking society and get some sights but the one I have is parkinsons.org.nz/upbeat. I hope this helps you. Good luck and keep in touch...

  • Thanks1

    maryalice

  • There's a lot of awesomeness going round this monday morning - thank ypu one & all. Besides me sits my cat - we never buy a cat, they know when we have a vacancy & a cat looking for a home appears on our doorstep. Helen.

  • hi there its mazpar here, so glad ive dealt with it positiively but you seem to be not quite as positive as i am this all depends on how long youve had the disease and your outlook on life. but i personaly not gonna let it grasp me . as i love life and you r gonna think i'm crazy but i kind of like parkinsons as 13 years down the line been good to me as its opened my life and done things i'd never have done otherwise infact its made me stand up for myself more as well

    as i love northern soul and have gone on to do a radio broadcasting course and have done my own show but at the mo am doing some cds of my music for the parkinsons charity and for the radio which is struggling a bit..

  • Jeff,

    Very well said. I feel the same way. I take one day at a time. I don't worry about tomorrow because today has troubles all it's own. I also face dealing with a lung disease too. Yet I press on. Not giving in or up!!

  • If you are able to move, you can probably ride a stationary bike. Check out pedalingforparkinsons.org and do what you can to mitigate the symptoms. I'm the person on the front of their webpage and I'm 66 with PD for four years. Because of pedaling, I was even able to summit Mt. Kilimanjaro last summer. You do have a choice. There is a light at the end of that fearsome tunnel.

  • i'm sorrry that PD stole the last 16 years of your life. At age 35 you are just beginning to live. I enjoyed your writing. Use it as an escape from the torment

    of PD. I rely on my faith. I'm going to check out your blog.

    Blessings!

  • Mary Alice,

    I am thrilled you have enjoyed my writings...that makes it all worthwhile. But I am not ready to throw in the towel just yet!!!

    Thanks again,

    jeff

    elcid82.blogspot.com

  • I checked out your blog. It is wonderful.! It kept me busy reading for several hours!

    Don't ever give up hope. It's the anchor of our soul.

  • Living with Parkinson’s gets harder each and every day

    And I listen to and do everything my doc has had to say.

    I exercise to keep my body flexible, strong and moving around

    And read and work puzzles to keep my brain alert and sound.

    I surround myself with those who have a positive attitude

    And don't associate with folks who put me in a really bad mood.

    When I open my eyes in the morning I start to think and plan

    What can I do today so that others in my world will understand.

    The frustration that I feel because I can’t do all the tasks I used to do

    And why at times I can’t avoid feeling really down and a little bit blue.

    But as I think of all of the people who are much worse off than me,

    I resolve that today will be better than the day before, and IT WILL BE!

  • My dog is has gotten me thru loss of my sister then parents this year, Hep C and now what is n ot 1 100 percent sure but whats looking more and more like PD. He a rescue dog, that s he rescued me, does day after day, Had a bad weekened, bone pain, fatique & beating myself up for being 'lazyy cant get things done-I was -and still do have days where Im a powerhouse. Im a slug tpday.. lousy typing LOL (dont know if I can blame that on PD but it is worse) Dont know whats PD or not, BUt my pup was at my side all weekend. And of course God..

    I love you all for sharing your humanity, theres some redemption.

  • Well I find myself in the company of charmed people, charmed because their true souls are here in all their glory on these pages - what an amazing monday morning - I am almost speechless - I love you all very much for your strenghts, bravery, fun, fortitude, sense of adventure. I am going to make a cup of tea - put some Tramex on my foot - & going to bed - my PD at the moment needs a lot of lie down time between up time. But I do have a very good book & my cat will come up with me - Tra la la lala la la Helen.

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