Home

NFF

Contact

Credits

DBSdonna.com
*DBS (Deep Brain Stimulation)

LineLineLineLineLine

Older Comments

1

DBSdonna 
###Three exciting events have happened lately that I'd like to share. First, in July, the quarterly review of the hospital where I had my DBS surgery in November 2010 - called "Peak Living" - did a feature story on my successful DBS and my younger son's reaction to the changes in me. To read the story, use the following link:  
 
LINK: http://memorialhealthsystem.com/wps/wcm/connect/MH/Main+Navigation/Health+Resources/Health+Magazine  
 
Once you're at the review site, click on the magazine cover showing a photo of a woman - me! - on the front cover. That should take you to the wonderful story.  
 
The second great thing that's going on currently is that I'm beginning to volunteer as one of many mentors for freshmen medical students at a local university hospital. The purpose of this program is to expose students to people with ailments so that they can get to know us and our diseases personally. What a bonus for PD patients in the future if their doctor is savvy enough (after being mentored by someone with the disease) to know they must have their meds on time, that a 15 minute delay can mean hours of "off" time!  
 
Third, the winner of a fundraiser held to support "DBS Voices Of The Rockies" will be announced in the next two days! The DBS VOTR sponsors many activities to help those with PD, most notably the DBS support group in the Denver area called "The Bionic Brigade". One lucky person who came closest to guessing the number of items in a jar will win two tickets to the CU vs. CSU footall game! The tickets were generously donated by the athletic director at University of Colorado - Boulder. Thank you and good luck to all who participated!

Tuesday, August 30, 2011, 05:57:10

1

DBSdonna 
###Here's a very timely explanation for why we People With Parkinsons cry so easily, and often at inapropriate times. And to think there is a treatment for it! Yea! -DBSdonna  
 
WHY DO I CRY? Written by Paul Short, Ph.D.  
 
Do you sometimes find yourself crying in response to insignificant incidents? Is the tendency to weep easily something that is new and uncharacteristic of you? Is the tearful response uncontrollable and disproportionate to the event that set it off? Does this crying occur when you were not feeling sad or depressed? Is the outburst sometimes incongruent with the event that set it off, such as crying when one hears a funny joke or the converse such as inappropriate laughing when feeling sad or stressed.  
 
If you answered yes to any of these questions, you may be experiencing a neurological phenomenon called involuntary emotional expression disorder (IEED), also known as emotional incontinence or pseudobulbar affect. The condition arises from neurological changes that are as yet not fully clear but we do know that it is secondary to other neurological conditions, including PD.  
 
The emotional episodes are, in and of themselves, not harmful but they can be perplexing and socially embarrassing if they occur at inopportune times. The unpredictability of IEED can cause a person to avoid interacting with others. IEED can also strain family relationships. I observed this firsthand when a very depressed young man I was performing a neuropsychological assessment for burst into laughter when he told me that his wife was threatening to leave him because he couldn’t control his emotions.  
 
Involuntary emotional expression disorder is another one of those “non-motor” symptoms of PD that we don’t do a good job talking about. A recent study by Phuong and colleagues (Parkinsonism and Related Disorders, 2009) concluded that about 15% of PD patients experience symptoms and 7% meet the recently proposed formal diagnostic criteria for IEED. This suggests that the condition is common enough for the medical community to routinely inquire about it. However, it is very easy to attribute this kind of emotional lability to personal weakness rather than to PD and patients often do not bring the subject up because they are embarrassed. Many times the symptoms are exposed only when a patient begins weeping during an evaluation.  
 
Proper diagnosis of IEED is crucial. The condition is distinct from depression although there is some obvious overlap in symptoms. It is important to distinguish the two conditions. For many patients, IEED can be treated medically. In fact, a medication specifically targeting the disorder was recently placed on the market.  
 
If you are experiencing any symptoms of IEED, mention them to your neurologist. PD demands enough from you as it is. Do not suffer in silence because you are ashamed that you “can’t keep it together.”

Thursday, August 18, 2011, 16:37:57

1

Tim E 
Did you or any of your family post information about your experience right after surgery and through programming? How long did it take you to get to your optimum DBS settings?

Friday, August 12, 2011, 13:20:31

1

Tim E 
Very nicely done. I'm glad to see the positive results of your DBS. I had surgery a month ago and still am still working through the programming phase with some good days and some not so good. It's easy to get discouraged because I wanted more "instant" results, but your story is encouraging to me.

Friday, August 12, 2011, 13:03:42

1

DBSdonna 
Tim, thank you for you comments on my video. I am glad it's encouraging to you.  

I know the programming phase is frustrating! You want to be healthy and you want it NOW! I was recently talking about this topic with a friend who is having a difficult time finding the right setting for him. I reassured him that it really did take months for my doctor and his staff to find the optimum setting for me. Actually, I have two optimum setttings. I use a higher voltage setting when I want my walking to be best. However, at this setting, my voice is a bit strained. A lower setting works best for me to have a strong voice. Also, we've noticed that just like the pre-DBS me, when I'm tired my voice is not as strong, my walking not as easy. It is a very common occurence for DBS patients to have different optimum settings for different activities.  

A funny memory from the programming phase was when they put me on one setting that had my me walking in circles because it made my head pulled to one side. I laughingly told the programmer "Kim, I don't think this is the best setting for me." She cracked up when she saw me and quickly changed the setting.  

My husband did post updates about my progress on "Caringbridge", but I think he quit once the surgeries were done. I'll check and write back again if there is any information that might be useful to you on my Carebridge site. My programming was fairly rapid. I think we found my current settings sometime in January which would make it 2-3 months post-op. Try to be patient (which definitely is not a virtue I have in great quantity.) and give yourself and your programmer plenty of time to find what works best for you. I hope your programming process willl soon be completeso you can reap the full benefit of your fully functional DBS. Take care ~ Donna

Saturday, August 13, 2011, 04:57:02

1

Tim E 
Donna, thank you for taking the time to respond to my posts. It is comforting to talk to someone who's gone through this. I'll continue to look for updates on your web site. Best wishes - Tim

Sunday, August 14, 2011, 16:31:35

1

DBSdonna 
Thanks Tim! I'll try my best to have interesting updates!

Tuesday, August 16, 2011, 20:17:28

1

DBSdonna 
###I've recently gotten to know a nice man from the DBS support group that I attend. This man, Kirk Hall, already very active in helping out other PD patients, just came up with a new way to help. This form of "help" is aimed at the younger crowd as he's written a children's book called "Carson and His Shaky Paws Grampa". The book began as a way to explain his condition to his grandson and took off from there.  
 
He has started a blog called SHAKY PAWS GRAMPA. The first edition of the blog is about the "genesis" of the book. You can read the blog at: http://shakypawsgrampa.blogspot.com/  
 
Or see his Facebook page about the book at: www.facebook.com/shakypawsgrampa  
 
I wish Kirk all success with his new book and hope you all find it helpful in explaining PD to the youngsters in your lives.  
 
Be well! ~ Donna

Monday, August 08, 2011, 06:51:52

1

DBSdonna 
###There unfortunately is a downside to DBS surgery - not everyone reaps the same level of benefit that I have. And some have problems, as with any surgery, and have to have the DBS electrodes and implanted battery removed. Such is the case with a dear friend. Eight years of an operating DBS system will be removed today due to infection. My heart goes out to her at the return to pre-DBS PD symptoms. Yet, I know she's glad she did the surgery because it gave her 8 years of functioning day to day with few PD symptoms to slow her down. She has achieved amazing results in her self-driven goal of improving the lot of all PD patients. Thanks to the vision and drive of this woman, there is a DBS support group in the Denver area and another starting up on the Western Slope. She has taken PD advocacy to the local, national, and even international level! She is a patient laison for DBS patients at a local hospital, a speaker, etc. etc. She is a champion for all of us with PD - a true hero. Please join me in wishing her all good things as she once again faces the challenges of brain surgery today.

Thursday, August 04, 2011, 04:25:10

1

DBSdonna 
###Some of you who watch my video may have watched it because you're surfing the 'net to get info about Parkinson's Disease, wondering if you or someone you care about may have PD. Okay, let's be honest, you're scared to death about the possibility! So, if you fit the description, this post is for you. I'm listing below 10 early waring signs of PD as provided by the National Parkinson's Foundation. The NPF cautions that each of the symptoms seen below could also have other causes sp check with your doctor.  
 
1. Tremor or Shaking
2. Small handwriting: A sudden change in your handwriting.
3. Loss of the sense of smell
4. Trouble sleeping.
5. Trouble moving or walking.  
6. Constipation
7. A soft or low voice.
8. Masked face: Marked lack of facial expression.
9. Dizziness or faintness when rising from a seated or lying down position:  
10. Stooping or hunching over.  

For more information about early signs of PD or other topics, contact the NPF at www.parkinson.org

Thursday, July 14, 2011, 23:50:17

1

DBSdonna 
###As I wrote a couple of months ago, I decided not to go back to a "paid" job following my successful DBS surgery , but instead to use my 18 years of Parkinson's Dsease experiences to try to help others with the disease. One of the ways in which I hope to do this is by encouraging others with PD to participate in clinical trials if they can. PD research can only go forward if those of us with PD help out in clinical research by volunteering to participate.  
 
I attend a wonderful DBS support group each month, the only one of it's kind I was surprised and disappointed to learn at the last meeting. The support group is wonderful because of the patient to patient sharing that goes on there and also because of the excellent speakers we have at each meeting. This past week a clinical research coordinator - a member of Colorado Neurological Institute - Lisa Fox, gave a talk about clinical trials currently available for PD patients at CNI. Without going into too much detail, one trial enrolling patients now (July 2011) is testing out a controlled release form of Amantadine. Another trial study is determining correct dosage amounts of an experiemental PD drug. If either of these research studies appeal to you, please call Lisa Fox at (303) 788-4974 in Englewood, Colorado. Lisa would also be happy to discuss upcoming clinical trials as well.  
 
We are the ones who have PD and we're the ones who are needed to help find a solution to what ails us! Wishing you all well. ~ Donna

Monday, July 11, 2011, 20:14:51

1

paula.cramer@comcast.net 
Hello Donna; I watched your video and am so happy you have overcome some of the difficulty of PD.  
I, personally, do not suffer from PD but my sister, Sharlene, does. She, like you, had the DBS surgery and it was a great help to her until during a hospital visit for stomach problems a sonogram being performed on her broke the wire in her neck. Don't ask me why they were messing with her neck when she was in the hospital for stomach problems. So now the wire is broken and she was told she would have to have the whole surgery performed again as they cannot connect the broken wires.  
Why I tell you all this is I am wondering if you think there is anyone out there that could do something for her. She is so depressed about the DBS no longer working and I can understand why. I know this is really a shot in the dark but it's worth a try. Thanks for any suggestions you might have.

Thursday, June 09, 2011, 10:27:45

1

DBSdonna 
Hi Paula - I'm so sorry to hear that your sister's DBS is malfunctioning. It would be so awful to get the freedom from PD that DBS can provide and then to have to go back to dealing with PD limitations again. I'm a member of a DBS support group in Denver and know from other DBS patients that this high tech procedure can be very touchy. I am not sure if there is something to be done, but if you wouldn't mind, please write to me privately at DBSdonna@gmail.com. If you'll write to me there, we can talk more openly about your sister and possible people who might be able to help her better than I because they too have had DBS problems.  

As for the sonogram in the hospital, the staff may never have handled a DBS patient before. The DBS procedure is so cutting edge that most medical para-professionals don't even know the term DBS! I've had the clinical staff I've seen call Medtronics - the maker of my DBS equipment - before treating me each time I've had a procedure of any kind done because I don't know all the things that could harm the equipment in my head, neck, and chest either! I know not to have an MRI but not much beyond that. So since the spectre of what your sister is facing now - damage to her implanted equipment - scares me, I make sure the techs talk to Medtronics - the experts. I'm not trying to say that this is in anyway your sister's fault - not at all. I'm just saying that the medical people I've run into (for example, in the Emergency Room when I needed a finger stitched up) are not familiar with DBS and don't know what to do or not do to us. So we have to fend for ourselves!  

Thank you for watching the video and for reaching out for help for your sister. She's lucky you've got her back! Please do write me at my private e-mail so I can try to help if at all possible. Best wishes to your sister for good news about repairing the DBS. ~ Donna

Friday, June 10, 2011, 22:16:01

1

DBSdonna 
###It's Mother's Day and I though it was time to update the website with information about what making the video has done for me. I had no idea when the project began what a profound impact it would have on my life! First, a special treat of doing the video was getting re-connected with my childhood friend and director of the video, Dan Weyand. An extension of being back in touch with Dan is getting to know, albeit long distance, his lovely wife Kimmy and technical guru Houston Barnett. Closer to home, I've gotten to know Dan's mother and his sister - both amazing women in their own ways.  
 
But beyond the wonderful personal aspects of doing the video, the making of it has opened up a whole new world to me. My son, Spencer and I, were interviewed for a quarterly publication put out by Memorial Hospital in Colorado Springs where I had my DBS surgery. They are also using the video for publicity purposes as are other medical facilities. Many other opportunities have arisen as a side aspect of doing the video, some of which I hope to actively pursue.  
 
It's been long enough since the surgery that I now know how well I really am and am contemplating what comes next in my life. After 18 years of progressively debilitated health, it's a bit daunting to think a whole world of possibilities is open to me again! My husband and I discussed my going back to work, but both of us agreed that if I don't need to, why do it? Instead, I think my experiences can best be used as an advocate for Parkinson's patients. So I intend to pursue that avenue in many ways. There won't be a paycheck to mark my efforts, but I think the pay-off in personal satisfaction will more than compensate for any lack of income!  
 
Finally, the effect of the successful DBS on my family members has been a joy to see! They no longer have to worry about me to the extent they did before. I think the filter between my brain and my mouth must have been removed during the DBS surgeries as I seem to be much more open about what I say . . . and my guys love the new me!  
 
So, 6 months post-DBS, I am feeling strong, directed, content, and very very happy! I wish you all the same peace in your lives!

Sunday, May 08, 2011, 09:50:30

1

DBSdonna 
###2 am ET, APRIL 11, 2011 WINNERS OF THE NEURO FILM FESTIVAL ANNOUNCED  
 
HONOLULU – With a record 108 films submitted and more than 100,000 votes from the public cast, the American Academy of Neurology Foundation is pleased to announce today the winning entries for its 2011 Neuro Film Festival?, a contest to raise awareness through video about the need to support research into the prevention, treatment and cure of brain disorders, such as Alzheimer’s disease, stroke, autism, Parkinson’s disease and multiple sclerosis.  
 
GRAND PRIZE ($1,000 and a trip to Hawaii) Awarded by a panel of judges for the film exhibiting creativity in a technically polished presentation: Calling on Her by Amanda Voisard of Syracuse, NY  
 
RUNNER-UP PRIZE ($500 and a trip to Hawaii) Awarded by a select panel of judges: Often Awesome, The Series by Andy Coon of Greensboro, NC  
 
FAN FAVORITE AWARD (Online Recognition) Awarded by peers as a result of public voting on video entries: Hope and a Clinical Trial to Halt MS by David Bexfield of Albuquerque, NM  
 
To view the winning entries and the other video submissions to the Neuro Film Festival contest, visit http://www.neurofilmfestival.com.  
 

Monday, April 11, 2011, 04:04:11

1

Shawn McPike 
Lisa, great to find others sharing their story online as well. I, too have early onset Parkinson's and had DBS Surgery on the left side last May and on the right in December. I have blogged about my journey at http://www.shawnmcpike.com and have a goal of actually running a half-marathon this year! God bless you and I wish you all the best.  
 
Thanks,  
Shawn

Saturday, April 09, 2011, 15:48:58

1

DBSdonna 
Shawn, running a half-marathon is impressive even for people who don't have PD. I applaud your efforts and wish you all success in meeting your goal! I personally am still battling the post-DBS weight gain and hope to soon be able to use an elliptical machine for longer than five minutes at a time! You're an inspiration even before I look at your website. I wish you all the best too. ~ Donna

Sunday, April 10, 2011, 20:25:25

1

LISA 
Thank you for sharing your story. My brother had the first part of the DBS surgery on Wed 3/30. He will have the 2nd part on 4/6. I hope and pray he will have the same great results as you did. God bless and thanks again for sharing and giving our family hope from seeing your results.

Friday, April 01, 2011, 17:53:01

1

Donna 
Lisa, thank you for writing. I'm wishing that your brother has as good of a response to the DBS surgery as I did or even better! I could have beenhappy with even smaller improvements, but I'm so fortunate that I achieved such a great outcome. I'd like to know how old your brother is, how long he's had PD, how many surgeries he'll be having, etc., etc. Lots of nosy information that you might not want to share or at least not on a public forum. If you'd be willing to share more info, please write to me privately at DBSdonna@gmail.com.  
 
In the mean time, wishing your brother an excellent outcome. Please tell him I'll be pulling for him

Friday, April 01, 2011, 20:34:32

1

Frank Dabbert 
Great job on the video, it truly is a miraculous story.

Wednesday, March 30, 2011, 10:00:07

1

Donna 
I really do feel that DBS has been nothing short of a miracle for me! The video was shot two months after the DBS surgery. Now at almost five months post-op, I'm doing really great! Thanks for watching and for commenting!

Wednesday, March 30, 2011, 14:12:13

1

DBSdonna 
###To Visitors: All of the voting excitement at the Neuro Film Festival is over, this website has slowed down and e-mails too, yet the video continues to work it's magic as several people talked to me today about DBS and their loved ones, about DBS and themselves. It is absolutely amazing to me that one little five minute video has generated so much good will, sharing of information, and hope for others. Dan, the director, told me this would happen - that it would gain momentum as time went on! I am so glad to have had the opportunity to be part of a truly pheonomenal experience. As I told a group of people earlier, I think that everyone who entered the NFF video contest is a winner whether they win a prize or not. Everyone is a winner just because they put their private lives out for the public to see.  
 
This website will continue as will viewing of the video. Please share it with anyone you think might find it uplifting or helpful. Wishing you well - Donna

Wednesday, March 09, 2011, 21:44:07

1

DBSdnna 
###VOTING ON THE VIDEOS ENDS TONIGHT! I found out that was worng in thinking everyone only gets one vote. You can vote once per day for your favorite video. So, PLEASE FOLLOW THE VOTING LINK ABOVE AND VOTE ONE LAST TIME FOR MY VIDEO! Thank you for all the support you've given me! ~ Donna

Tuesday, March 08, 2011, 06:43:50

1

Edith Knoll 
It is so wonderfull you were able to get the surgery and the courage to have the surgery  
I'm so hAPPY to hear your doing so good . God can do wonderful things  
God Bless you and you family  
Aunt Edith

Friday, March 04, 2011, 18:20:25

1

DBSdonna 
Hi Aunt Edith! I'm so glad you were able to see the video. It IS absolutely amazing the difference in me after the DBS surgeries. I'm enjoying life again with all my being! Can you believe how grown up Brad and Spencer were in the video? As their mom, I get to see the silly, immature sides of them but I was very impressed with their maturity, composure, and words on the video. We're all doing well and hope you're the same. God bless you and yours too! Love, Donna

Friday, March 04, 2011, 19:21:50

1

Dora Grilliot 
Awesome. Praise God for the advances in medicine and procedures now available to help people like Donna have a better life. What a blessing for you all. Thanks for sharing your story.

Thursday, March 03, 2011, 20:39:43

1

DBSdonna 
Dora, thanks so much for watching the video and for your nice comments about it. You are so right that it is a blessing for us all - a huge wonderful miracle is how I see it! My neurologist said today that I was doing so well that if he put me in a mall full of neurologists, they'd think I was his patient due to having headaches - never would they guess I have PD. That was great news to receive! I am very grateful for what the DBS has done for me. Darrell says "thanks" for your comments too! ~ Donna

Thursday, March 03, 2011, 21:08:15

1

Netta Otis 
Awesome Video. Your story will inspire many.

Thursday, March 03, 2011, 09:11:24

1

DBSdonna 
Netta, thanks so much for watching the video and for commenting. I hope you're right about inspiring others. ~ Donna

Thursday, March 03, 2011, 13:11:45

1

DBSdonna 
###THE WOMAN WHO INSPIRED THE NAME OF MY VIDEO HAS BEEN A STRONG INFLUENCE ON MY ATTITUDE TOWARDS DEALING WITH PD ALL THESE YEARS. SADLY, PARKINSON'S NOW "HAS" HER. SHE HAS BEEN LIVING WITH HER MOTHER, NO LONGER ABLE TO LIVE INDEPENDENTLY. HOWEVER, HER MOM PASSED AWAY FROM CANCER THIS MORINING AND SHE IS NOW ALONE. WHERE SHE WILL GO NEXT IS ANYONE'S GUESS. PLEASE JOIN ME IN EXTENDING MY DEEPEST SYMPATHY TO "HARLEY" AND WISHING HER PEACE IN THE LOSS OF HER MOTHER. GOD BLESS YOU, HARLEY. ~ DONNA

Thursday, March 03, 2011, 08:16:12

1

Debi Hunt 
What an amazing story & video Donna!!! Prayers to you and yours!

Thursday, March 03, 2011, 08:14:27

1

DBSdonna 
Debi, thank you for writing in. It's a story you're well familiar with, I'm sure, but from a distance. D and the boys have been wonderful all the years I've dealt with PD. Prayers right back at you. ~ Donna

Thursday, March 03, 2011, 08:29:20

1

Yvonne 
Awesome video - a great family testimonial! I would think that anyone considering DBS would find this video very reassuring. Sharing your story is certain to help others facing the same decision.

Tuesday, March 01, 2011, 18:18:11

1

DBSdonna 
“Awesome video!” Awesome comment! I hope you’re right in that others considering DBS would find the video helpful and encouraging. I hope that it will encourage and inspire not only people with PD, but also those with other debilitating illnesses to take a chance on themselves to try to improve their lives.  
Thank you for watching our video and for your nice comments! ~ Donna

Wednesday, March 02, 2011, 09:44:40

LineLineLineLineLine

More Comments: Page 1 | Page 2 | Page 3 | Page 4 | Page 5 | Page 6