I haven't posted here in a long time, but have something great I wanted to share now. I had DBS surgery in November 2010 and was one of the lucky ones who've had a great response to it. While in my neuro's office for programming, I read about the 2011 Neuro Film Festival - an event designed to bring attention to the need for funding brain research. I decided to enter a video into the contest because I have a very positive story to tell - a story showing someone who has benefitted greatly from brain research!

The title of my video is I Have Parkinson's; It Doesn't Have Me! You may recognize the words as ones which Laura "Harley" Dean always closes her posts. From the time of my diagnosis, I have always admired Laura for her attitude towards PD. She gave me an idea of how I wanted to handle my own PD. I still admire Laura greatly and the spirit with which she's still fighting PD although the disease is giving her a tough time now. She gave me permission to use her words as my title and has become a friend as we've talked long distance. Harley's spirit is alive and well in my video!

To see the video, the easiest way is to go to: www.DBSdonna.com

Once there, click on arrow on the video to watch it. Be sure to turn up the sound because the music is absolutely beautiful (thanks to my talented neighbor, Maree McRae). Also, please be sure to type in a comment to let me know what you thought of it when you're done watching it. Finally, I'd appreciate it if you'd forward on this e-mail or one of your own to anyone in your e-mail address book that you feel might benefit from seeing the film.

Brain research has given me back my life and I am so completely grateful to be able to share my happy story with others! Too many thank you's to go into right now, but my very deepest thanks to my life-long friend, give or take 30 years, Dan Weyand, who made my life story his priority. And to Harley who was my inspiration.

Here's to brain research finding a cure for us all! Donna

What a great family you have! Excellent video and if you are not IQ i think you miust have a high one [oh my bad pun!] It's good to hear from you again and i think your positive outlook is very inspirational . i'm sure we will want to link to your video and site - it's certainly creative and very well done. Glad it worked so well for you. Thanks for sharing.

Hi Paula! Yes, DJM1 = Internetqueen of old! I came back earlier and found out from Vicki how to get in touch with Harley and have been chatting with her on and off ever since. It breaks my heart that she's having such a hard time now because when I was first diagnosed with YOPD, she was my role model for telling PD where to get off! I've always admired her spirit!

Paula, are you still as active as you were (with Lil? Jaye?) in the outside world of PD? I had the opportunity to meet Joan Blessington Snyder - a big favorite of mine for her spirit too! - in 2009 at her annual Shake, Rattle, and Roll fundraiser. This forum, and all the forums that lead up to this one, were my salvation in my early PD days when I covered up my condition with "coffee jitters" excuses. But once we moved back home, everyone knew I had PD already and it was a big relief to just quit trying to cover-up.

I'm rambling but it's just so nice to come back and find old forum friends! My DBS was a huge success, luckily for me, and my family and I are enjoying every moment of it. The circumstances surrounding the making of the video are explained in the Director's Notes on my website, www.DBSdonna.com. If you want to hear the beautiful music written and performed by my talented friend, Maree McRae, go to the same website and choose "Donna's Story" and "Film Credits" to hear Maree's full length songs.

The stars aligned right, I fortunately knew a couple of really talented people, and my family supported my efforts whole heartedly. My only disappointment in the video is how emotional I was while talking about PD. I would have loved to have not cried while filming!

Thanks for the welcome back, Paula, and I appreciate your comments! Internetqueen (aka DJM1) (aka Donna)

Donna, you won't remember me, but I remember your posts,
Like you these forums were a lifeline to me as well, all those
big hearted people out there supporting people, and helping them
understand what they were dealing with.

Your video is wonderful, and will give hope to many.
It made me cry too!

Thank you so much
Lindy

Lindy, I do remember you. It's amazing how many names I do remember because, frankly, memory isn't my best thing! But lindylanka is a moniker that sticks with me.

Thank you very much for your kind comments. I first was attracted to the contest by the prize of a trip to Hawaii! I thought how nice it would be to treat my husband to a vacation instead of vice-versa, but I quickly changed my thoughts. Not that Hawaii wouldn't be nice, but I am so totally delighted with the results of my DBS that the focus soon became trying to encourage others to try everything they can to improve their lives.

I know not everyone has a good response to DBS. In fact, I have a friend I share an exam room with whenever our neuro appointments for programming coincide. We sit and talk inbetween "tweaks." She has had 3 DBS's and is still having major trouble functioning. I admire her positive outlook and her sheer guts in dealing with her whole situation. So I know it doesn't work well for everyone, but when it does. . . it's a miracle!

Again, thank you for your comments. I hope I can help to carry the torch from those who helped you and I so as to help others with PD.

In friendship ~ Donna
www.DBSdonna.com

Donna -

Some time ago I was at a celebratory dinner for my niece and was seated next to her husband. Although all family members know I have Parkinson's, it really is not a topic other than the occasional, "How are you feeling". Of course, I say, "Fine." This particular family gathering, the husband of one of my nieces sat next to me. After talking with him about sports, teaching, and the like, he leaned over to me, and in a conspiratorial voice said, "Tell the truth. Wasn't Michael J. Fox just putting on a show when he was on television, wiggling and gyrating? You don't do that." Not yet, I thought to myself as I assured him Michael was not acting. Not yet.

Your film is perfect. It shows how we all were once just another person in society, the persistent, deterioriating aspect of this determined disease, the hope for future medical advances in treating the symptoms, but the biggest ache is watching the effect on our immediate family members. It brings me to tears when I consider how PD has cheated them. I think it is more difficult to watch someone you love suffering than it is to do the suffering.

By the way, It is an encouraging sight to see you writing! Why I would focus on that, I do not know, but it is the supposedly insignificant things I can no longer do that disturb me the most.

Wonderful film.

Ann

AnnT - I definitly remember you too! I think your comment is perfect! All of us struggle at some point or another to be seen as our old selves, not as a person with PD. I had hoped to get my youngest son through high school before PD caused me major issues, but it just wasn't to be. But, although the staff and other parents at the high school saw me as "the woman with PD", it turned out to be a good thing as eveyone was terrific when we needed help.

Only those living in the same house with you really know how much PD is interfering in your life. Even my best friend from age 13 on, surprised me because I really thought she "got" the nature of the disease. But one night as I was getting ready to go to a concert at Red Rocks, I was "Off". My hair and make-up finally done, I tried repeatedly to tie my tennis shoes. Finally, she asked if I wanted her to tie them for me and I wryly responded "If you want to get to the concert sometime tonight, you'd probably better" So she tied my shoes and we left. A couple of hours later when I was "On", I bent over and tied my own shoe without any problem. I will always remember the look of shock on her face as she said to her husband "She couldn't do that earlier!" So even those nearest and dearest to us don't understand the flucuating nature of PD.

In the "Director's Notes" on my website, www.DBSdonna.com , my friend Danny wrote: "Anyone inside PD knows what a statement it is for Donna to write the title of the film, an impossibility for her prior to the DBS surgery. The film could end right there. Enough reason to support brain research: an 18 year case of PD – with perfect penmanship!" You obviously are one of the PD insiders who recognized how incredible it it that I could write so well after 18 years of PD progression. Before I had the DBS, I had to type things on the computer if I wanted to be sure I could read it later as my own handwriting was indecipherable, even to me

You wrote: I think it is more difficult to watch someone you love suffering than it is to do the suffering. I couldn't agree more! I have often told my husband that he has the far harder side of the PD card that we've been dealt to handle, far harder! And it is a "we" thing with us. Many marriages suffer due to the stress of dealing with PD, but I first had symptoms 8 years into our marriage and we celebrated our 25th anniversary in 2010! I am absolutely blesssed with my family.

Thank you so much for watching my video and for the nice comments too, Ann. Wishing you all the best! ~ Donna

Thank you to so many of you who took the time to view my 5-minute video about the miracle that DBS surgery has been for me! This is my first time ever entering this contest and I wasn't familiar with how the voting worked. It seems although I've had over 1,500 views of the video, it's not the number of viewers that count - it's the number of people that vote for your video that counts. And the voting didn't start when the viewing did!

I have absolutely zero chance of winning the People's Choice prize for favorite video as a couple of the videos entered already have over 7,000 votes! But I still think my video has a great story, compliments of my friend who directed it, - an uplifting, positive story about what DBS has done for me and why we should support brain research!

Whether you already have seen my video or even if you haven't, please take 5 minutes to view the video by going to: www.DBSdonna.com and follow the links you'll find there. Also, please be sure to forward it on to anyone you know who might be encouraged by my story.

As I said, I will not win the People's Choice Prize, but by voting for my video, the increasing numbers may catch the judges' attention for other prizes available. The most important reason for sharing this video though is that it just might provide the "push" or the support that someone needs to take the first steps to help themselves feel better. Thank you!