When all you have is luck... but then you loose hope for luck

I am one of the lucky ones amongst us ... PWP... but I am stuck in a rut of depression I can't shake.

Dx'd (diagnosed) when I was 30, married with 2 kids. At the time I was traveling the world and racing ahead in my career. I thought all was well. In 2003 I ran a marathon by 2006 and Dx'd I couldn't get out of bed. Central rigidity was my main challenge.

From 2006 - 2010 was a story unto itself. So much for the slow progression with young onsets; by 2010, I was getting standardized assessment scores equivalent to those of 70-75 y.o patients with 15 years of disease history. We found a great doc at OSU Medical Center in Columbus OH USA, Dr. Rezai. Did a bilateral DBS within 4months of our first visit. I thought then as I do now that this man was a hero and my saviour. The surgery que for Rezai was in 2010 2 years, it is now 3-4.

Placement occurred in April 2011. I had amazing results. Near resolution of both my motor and many of my non-motor symptoms. In a strange way this was a curse as I had to revisit a period of disease denial. Despite all this luck I developed a non healing scare and 4 weeks ago today Dr Rezai removed his gift. Only one side, but the side that controlled my worst side.

Since removal life has been tough. Readjusting to meds. 3 weeks of IV antibiotics. I am now hopefully going back in for re-implantation in early April. Again luck and good fortune. I have turned to my Facebook network to get well wishing and expand my support team. I had people from my early childhood sending me messages of support. I am so lucky........

...... I just can't work out why I can't' quit being so sad....

Not sad for myself. Just down. Cymbalta can't kick it, so we added Seroquel. Not working. I am taking my family on vacation in ~10days but I just feel awful both guilty for what I am lucky enough to have and mad for what I don't. I am starting to feel trapped.

I just can't shake it. Why??? Bloody Parkinson's Disease.

11 Replies

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  • Forgive yourself your only human x

  • one of the most truthful statements. I carry a fortune cookie fortune with me that says: "A man cannot be comfortable without his own approval" how true that is.

    I have another tattooed on my back that says: 'Ability will enable man to get to the top but character will keep him from falling". Now is the time when I see the quality in my fellow PwPer's character.

  • It sounds like you have had a tough go. We all get depressed and it is a horrible feeling. But you are still here and you still have your family. Try to embrace everyday and be happy and poitive about all the things you can still do and all that you still have. Blessings to you and your family. Have a wonderful, memorable vacation. :o)

  • thanks for the positive comments.... every bit of positivism helps

  • When I feel myself getting sad about life I get busy. I work in my yard I work in my Garden and I read my Bible. I am recently diagnosed DEC. 07, 2011. I have other problems like 5 back surgeries. I have had the PD symptoms for 20 years it just suddenly Bloomed on me. I crawl in my garden because I can't bend over well. I drive my riding lawnmower ok but some days I can't do anything but read my Bible. I feel fortunate that I find peace in the Bible. Some people don't.

    GOD BLESS YOU and I will pray for you my PD friend!

  • A bumpy we road we must both weave and with you short insights above I have a lot of empathy from where you came from.

    I am not a religious person but I believe in the power of belief. I have many friends who are true believers and they always tell me that god places the burden on those who can carry it. My friend he has certainly placed it on you. i get a sense from the tone of your post that when you crawl in your garden you do not feel the weight of being able to carry these challenges that others cannot. This is an inspiration. Next time you are kneeling in your garden and wonder if if it is worth it look beside you -- I will be there with you in some way. Together we will keep going.

    It is important with this disease to involve others, listen to your body and pace yourself. I can see a picture in my head of you reading your bible not being able to do much else. With every phrase you read, with every powerful word you mutter in response, with the sound of every page you turn.... you are regaining your energy.

    All the best my friend on this living with the new challenged your lord has given you to carry. I have no doubt that you will concur it and find strength in your beliefs and the struggle of others.

    P.s. I wrote a new post inspired by what you and others wrote me here.

  • Thank You for the reply.

    Touching words to say the least. I do not ever want pity. I keep a positive attitude because of my faith. Religious or not people should read the Book of Job in the Bible. A good way to do this for those that don't have a Bible go to BIBLICA.COM, a free on line Bible. They even have an audio for people that can't read well. I find my eyes have PD also and they shake sometimes, not all the time. It makes it difficult to read. For all my PD friends I say try Jesus, just try it with an open mind. What would you have to lose? You have nothing to lose but everything to gain! For instance peace of mind, and eternal life when we are through with this one. I didn't mean to get on the Pulpit and Preach. If you knew me before Jesus you wouldn't believe it's me. GOD BLESS YOU and ALL MY PD FRIENDS

  • This is my best shot ....you need a plan. Things don't change unless you drive it. A Plan sounds hideously dull, well I guess but b4 you can make a plan you need motivation... and that doesn't come along too much without being inspired. So in this order be inspired, gets you motivated then you can write a plan to break the cycle. For inspiration try TED.com, once you feel all ablaze and you will get making a list, things you loved doing as a kid, things you always wanted to do .... I know limitations dah dah well some people can still ice skate, dance and play drums. Then make a plan to do them, pick 3 and have a go!! Now just to be really tough on you teehee.... I'd love you to share your plan! Show me yours and I'll show you mine! Ooooh er!

  • Thanks for the insights. You might be interested to read my new post as I made a choice to take a different direction yesterday -- we must have been on the same wave length. Cheers.

  • Non scientifically I think everyone I know who's had stroke or brain surgery is sad, especially if everything is not 'fixed.' Not for any reason. Somehow you will compensate. Good luck to you, we're all here for each other..

  • Hi

    I was very moved by your blog, you started with I am one of the lucky ones amongst us..... Despite everything you can begin with such a positive statement. Thankyou

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