NeuroTalk Support Groups - DBS disconnected and now. . . (Amazing story!)

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- - DBS disconnected and now. . . (Amazing story!) (https://www.neurotalk.org/parkinson-s-disease/43461-dbs-disconnected-amazing-story.html)

DBS disconnected and now. . . (Amazing story!)

Quote:

Carlos, from Portugal, was diagnosed with PD 20 years ago, when he was 30 years old. He had DBS surgery October 2003. He had some serious post-op complications (brain hemorrhage) that left him with some language difficulties and mobility problems with his left leg. Despite all this, he did experience significant improvement in his PD symptoms (severe dyskinesia, bradykinesia, rigidity).

Nothing new at this point, you are probably thinking... but 2 weeks ago he woke up speaking clearly! Out of nowhere! Just like that! But the story doesn't end here.

Meanwhile he went to see his neurologist for a check-up appointment only to find out that he was "disconnected!" Yes his DBS “device” was “off”! And his speech was great…and his mobility…and his bladder control…everything! He even improved his golf handicap!!! lol. He says he can’t remember feeling so well. Can you believe this? Well, his doctors couldn’t understand it either and next week he’ll be admitted in the hospital to run some tests. He will be a “case study”. He’s now taking half of the meds he was taking two weeks ago, he’s “disconnected” and he’s still feeling a great improvement on his PD symptoms.

Have you ever heard of something like this? Please let me know what you think cause we are trying to find a similar case.

Thank you

Another member of my group communicated with Carlos via email. He said, "About the improvement of my golf is true! Everybody was surprised with my game in the last few days, because I do the “swing” much better. As the “follow through,” I send my arms in front, and because of that the ball has more distance. I have real fear of my situation, because if it goes back…"

J-

Quote:

Originally Posted by Judith (Post 257639)

I have an online support group with members from different parts of the world. Two of my members have spoken with a man who has a most unusual story to tell. He asked that we post his story in hope of finding someone else with a similar experience. He is an active member in a Portuguese Parkinson support group and is known by my friends, so I feel that I can trust that the story is true.

The following quote is from one of my members, also from Portugal (with edits for English syntax):

Another member of my group communicated with Carlos via email. He said, "About the improvement of my golf is true! Everybody was surprised with my game in the last few days, because I do the “swing” much better. As the “follow through,” I send my arms in front, and because of that the ball has more distance. I have real fear of my situation, because if it goes back…"

J-

I have heard of one other case like this. I'll ask some MDS's what they think.

Charlie

That is a miracle - the first I have heard for the DBS
yet I know of a few others that were real and they are not famous people
but they were healed of PD... :)
thank you! I needed to hear of another...
there is a book called - "Hope Heals: How One Man Conquered Parkinson's"
by William P. Hansen (Author)
:)

Case report
Parkinson's Disease “Don't Become Your Disease!”
http://tinyurl.com/4fhwo4

Opher Caspi MD, , a and Cynthia Thomson P D, RDa

a From The Program in Integrative Medicine, Department of Medicine, College of Medicine, The University of Arizona, Arizona Health Sciences Center, Tucson, AZ, USA.

Available online 18 October 1999.

References and further reading may be available for this article. To view references and further reading you must purchase this article.

Abstract
Parkinson's disease is a common idiopathic neurodegenerative disease affecting an increasing number of elderly people. The disease usually manifests with a classical triad of symptoms (tremor, rigidity, and akinesia) and is considered to be the result of dopamine deficiency in the brain. Among the theories to explain the ethiopathogenecity of Parkinson's disease are some endogenous mechanisms, such as mitochondrial dysfunction, oxidative stress, action of excitotoxins, deficient neurotrophic factors, and dysimmunity, and some environmental factors, such as undesirable nutritional status. The cornerstone of Parkinson's disease therapy is the exogenous supplementation of levodopa, the amino acid precursor of dopamine. For most patients, however, this treatment fails over time and other alternative therapies are pursued. The purpose of this paper is to explore the lines of evidence suggesting the roles for Mind–Body medicine, nutrition, and vitamin and herbal supplements in the integrative approach to the medical care of patients with Parkinson's disease. It is proposed that many parkinsonian symptoms can be treated, controlled, and even reversed by adopting such an integrative and comprehensive approach.

Author Keywords: Parkinson's disease, diet, antioxidants, vitamins, mind–body medicine, hypnosis, Ayurvedic medicine, music therapy, alternative medicine, integrative medicine

Article Outline
• Mind–body medicine and parkinson's disease
• Diet and parkinson's disease
• Diet and Oxidants as Potential Etiologic Factors in Parkinson's Disease
• Diet as a Potential Treatment of Parkinson's Disease
• Ayurvedic medicine and parkinson's disease
• Music therapy and parkinson's disease
• Summary
• References

Table 1. Dietary factors that affect clinical response to -dopa medication

View Within Article

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Table 2. Practical dietary guidelines for Parkinsonian patients

View Within Article

Integrative Medicine
Volume 2, Issue 1, Winter 1999, Pages 37-42

All i can think of..

..is that somehow when certain areas of SN neurons are "killed off", that they create "bottlenecks" in signal transmission along neural pathways. I'm thinking of why would a pallidotomy or a thalomotomy "work". Maybe these structures affect the neural transmissions that are part of a "circuit" that has a profound effect on desired messages for DA neurons to become processed, and their removal allows the messages to get through unimpeded. This could possibly be what's happening here. The DBS "rerouted" certain "channels" of neurite growth. or deactivated certain channels that were acting to dampen certain signals that control muscle movement, and when it shut off, the effects persisted. I would not expect this phenomenon to be a permanent effect because the systems are in constant change. We'll wait and see.

CS, thanks for your input. I'm not a scientist, but I do understand what you are saying and it seems like a plausible theory. I hope for Carlos' sake that any rerouting of brain circuits is not temporary. I'll keep you posted.

Judith