laser treatment of PD
 

A friend sent this link. Will the scientists please weigh in?

Learned about this from Ray Kurzweil newsletter, very interesting and encouraging.

http://phys.org/news/2013-11-lasers-...parkinson.html

Seems safer
 

(OK - I am going to sttempt to paste an image in this thread - never tried, but here goes)
Well, maybe somebody can do it right!

Light to treat your brain appears to be a lot safer (or so it sounds) than a drill and scalpel. And using technology ought to be a way to a cure - check this "chip" out:
http://cdn.physorg.com/newman/gfx/ne...sd.jpeghttp://

Go to this link:
http://phys.org/news/2013-09-chip.html

In an advance that could dramatically shrink particle accelerators for science and medicine, researchers used a laser to accelerate electrons at a rate 10 times higher than conventional technology in a nanostructured glass chip smaller than a grain of rice.

it is safe to say this is highly theoretical and it will be years before we may see any central nervous system applications. i imagine you could safely insert a tiny fiber optic cable into one's brain and shine a light on a very small area of the brain, and who knows, leave it in place like with a DBS and shine the light continuously then remove it later on. so maybe i'm wrong!

the removal of protein deposits using vaccines has been successful in animal models, phase1 trials with alzheimers had side affects and little benefit, i think there is a phase1 trial in process or seeking approval in pd. have to double check this info.

there seems to be some controversy whether lewy bodies cause pd or are an artifact. autopsies of people receiving fetal cell transplants back in the 1980's/1990's that benefitted from the procedure showed lewy bodies in the new cells so no simple cure.

how about focused ultrasound???
 

soccertese

this sounds like a good compromise. Am I missing anything?


Benefits of ExAblate Treatment for Parkinson's Disease

1. Focused Ultrasound treatment is non-invasive just like radio-surgery, however it therapeutic effects are immediate and it does not use ionizing radiation and thereby does not have the adverse effect and limitation associated with it.
2. Compared to radio-frequency ablation, focused ultrasound is non-invasive and therefore has significant reduced risk for infection. Also as focused ultrasound is done under closed loop thermal feedback, it is more likely to damage only targeted tissue and spare non-targeted healthy brain.
3. Compared to implantation of deep brain stimulation device, focused ultrasound is a onetime procedure, and does not require subsequent procedure to replace batteries. Focused Ultrasound also does not involve implantation of a foreign body, and thereby carries a reduced risk of blood clots creation.
4. Since there is no need to insert electrodes or needles the collateral damage to the brain is reduced

source: http://www.insightec.com/Parkinson_Disease.html

your're describing surgery with ultrasound, destroying a part of the brain,
the photo treatment wouldn't kill cells, just dissolve the lewy bodies i assume.
or like with some experimental treatments, you pretreat the cells with a chemical that binds with the proteins, the chemical absorbs the light and then might breakdown the protein.

http://fusfoundation.org/focused-ult...insons-disease

Peggy, I agree with you about InSightec's ExAblate treatment. It seems very exciting. I spoke with the team testing it at the U of Va. a few weeks ago at a research conference. They are still waiting for final FDA approval to begin the PD study (not sure why its taking so long). The have begun researching it on PD in Switzerland. They are much further along with researching its use on Essential Tremor and told me the results have been great. They think they will get equally good results on PD Tremor since they intend to hit the exact same spot in the brain.

Just think if they can get similar results to DBS without having the surgery and other issues that go along with it..........

be sure you know what this is...
 

We got really excited about this, too, and actually corresponded with the Dr. in Switzerland.....it is different from DBS in several ways, the most important, to us, being that the ultrasound permanently severs the nerve that is the target. If it worked, that's great, but if you were an anomly and the typical target did not work for you, it's too late, the heat has destroyed that connection/nerve in the area that was the target.

I think it has huge potential too, and it's really exciting. I just don't know how they determine where to focus the ultrasound laser beam for each individual person: with DBS, you are awake and they can move the electrodes around to find the optimal placement with no damage, with this procedure, I don't think it works like that. But correct me if I'm wrong, maybe I am misunderstanding the procedure.

I think you are mostly correct. I do know that the patient is awake during the procedure and they are monitoring its effects real time so they know if they have the right spot or if there are problems. But, as you said, it may be irreversible. Still seems much safer to me than DBS, and the early results with Essential Tremor have been excellent. It certainly bears watching.

This is some info that you've probably seen already on the ExAblate Neuro:

http://www.insightec.com/contentMana...hite_paper.pdf

AFFiRis - PD01A A-Syn vaccine
 

[QUOTE=soccertese;1031399]

the removal of protein deposits using vaccines has been successful in animal models, phase1 trials with alzheimers had side affects and little benefit, i think there is a phase1 trial in process or seeking approval in pd. have to double check this info.
QUOTE]

Yes, Soccertese, AFFiRis has completed enrollment for their Phase I study of
PD01A, a Alpha-synuclein vaccine. I think the Alzheimer's vaccine is for Beta Amyloid and Tau. They have three different drugs in various phases of research.

Still exploring
 

lurkingforacure
You stated "with DBS, you are awake and they can move the electrodes around to find the optimal placement with no damage". This is not really true, or I might say we don't know if this is true.

I am not arguing against DBS, because I may one day be convinced that it is right for me. But researchers do not know WHY DBS works, and there has been damage done in some cases. For example, there are many cases where balance is worsened, and falling is how many with Parkinson's end up their last days in a wheelchair or even check out of this world.

Ablative surgery (thalamotomy and pallidotomy- both ablative surgeries) have been used for decades and never have I heard of balance worsening. The voice is another prime target of DBS. I believe there have been some cognitive issues following ablative surgery, but who knows? Maybe we need to ablate or destroy the clump of cells causing the symptoms to keep progression in check. (Just guessing)

I do know that when I underwent experimental brain surgery, I did not know all that could have gone wrong. Permanent damage can be done with a brain bleed caused by hitting a blood vessel with the probes used. And I did not take immunosuppressant drugs, often done to avoid rejection of the cells transplanted into my brain. I think that fact alone (that my body did NOT reject cells from another person) is a huge success!

And although I received benefit from the experimentalllll surgery, the trial was dropped, claiming it did not show enough efficacy in phase II. We get to a point where any kind of relief is welcomed, ablative or temporary stimulation.

They have done DBS surgery in Europe much longer than in the U.S. I was at a meeting where a neurosurgeon from Germany told me (without an examination - just observing me) that he would not do DBS on me. When I asked why he said, "Because of your balance issues," which used to be very bad. I still stumble around, but nothing like I did before my experimental surgery!

We need to discuss these procedures among ourselves as some surgeons and sponsors (not all) are not being completely transparent with us. The cost must be on the sponsor's side - but how do we assess the cost of a patient's quality of life.

In summary, I know many - (30+ patients) whose lives have done a 180 after DBS, and I know at least that many for whom it was only a short-term fix. I'm in search of something lasting and not so invasive. As I said before I would prefer a beam of light (even if it destroyed the clump of cells tearing my body apart) over a drill and knife. It is a very, very individualized decision.

Thanks to everyone for sharing.
Peggy

Blue light special
 

http://www.dailymail.co.uk/health/ar...-caffeine.html

Here is an interesting article about blue light having the same effects as caffeine, even for the blind! Since caffeine positively affects PD, it would be interesting to see if blue light does so, too. If not would some other frequency help?

peg,
DBS technology is evolving and i assume more people will benefit and with the history of great phase1 results and negative phase2 results in novel pd clinical trials, spheramine included, DBS, dupdopa, apomorphine pump and maybe the l-dopa patch pump may be the only treatments us old folks will be able to use when drugs aren't enough.

hoping for some positive results from stem cells - trials scheduled in 2014 - gene therapy, european fetal transplants, and there is this quirky pig cell implant in new zealand LIFE CELL TECHNOLGY (?) where they have operated on 1 patient, 3 more scheduled. kind of like spheramine but cells don't excrete dopamine but growth factors kind of like BDNF, GDNF, etc. that "rescue" neurons.

keep in mind that some of the fetal transplants in the 80's/90's reversed symptoms and the affect was long lasting. but you never see a discussion of this technology. i'm sure very controversial.

dbs
 

I have checked out practically every option that is available for me (10 years of PD, rigid-dominant, responsive to L-dopa, mild/no cognitive deficiencies and depression) for almost an year and finally decided to go for DBS.

From my point of view, there are several promising therapies are being developed, as you have discussed here. But nothing is ready for me right now. Here is a summary of my analyses of whats out there (within 2-3 years).

1. GDNF gene therapy (NIH) produces fairly low levels of GDNF in vivo (based on my calculations of converting gene therapeutics to protein values which may not make sense to anyone but me).

2. Vaccines for PD: Two of them going into Phase 1, both targeted to alpha-syn. I would think, an antibody binding to alpha-syn in the brain or a mechanism generating regulatory T cells would need to be coupled with anti-inflammatory strategies. That may be a part of clinical design, but I donot know that at t his time.

3. Stem cells: Most promising in my opinion. Patients are already selected for phase 1 and their cells are growing in culture. So will have to wait till phase 1 is done, and results are out. another 2 years at minimum.

4. fetal cells: same story as above. Honestly, I would go for stemcells rather t han fetal cells.

SO whats left if I want immediate relief is DBS. Many people who had DBS told me "you would know when you are ready". I am at that stage right now. My surgery is scheduled for next week. I am going in for DBS knowing very well that it is not a cure, has its limitations (speech for example). My hope is to be able to move and live without muscle rigidity and dystonia. I might have to keep my mouth shut in order to move.....which may not be a bad idea!!

Girija

thoughts are with you
 

Hi Girija, I sent a private message. I send you good thoughts and prayers for a great result and fast recovery. Hugs from Madelyn

First, good luck Girija.

The article pointed to by Nan is certainly very interesting, but I can't believe that the laser technique described will lead to generally available therapies within the next 10 years.

I don't see how the technique scales up: even if you were able to detect and remove the clumps in one neuron, how would you be able to deal with all the surviving neurons in the substantia nigra of a PwP?

Pakkenberg et al. report [1]:
"Using an unbiased stereological technique, the total numbers of pigmented and non-pigmented neurons were estimated in the substantia nigra of seven patients with Parkinson's disease and seven control patients. Compared with the controls, in which the average total number of pigmented neurons was 550,000, the number of neurons was reduced by 66% in the patients."

It seems to me that a more immediate approach is to use therapies that reduce the rate of alpha-synuclein misfolding and aggregation (e.g. exercise leading to an increase in Hsp70 [2][3] and curcumin [4]) and try to avoid those chemicals that accelerate the rate of the process ( e.g. aluminium [5]).

Tag johnt:alpha-synuclein

References

[1] J Neurol Neurosurg Psychiatry. 1991 January; 54(1): 30–33. PMCID: PMC1014294
"The absolute number of nerve cells in substantia nigra in normal subjects and in patients with Parkinson's disease estimated with an unbiased stereological method."
B Pakkenberg, A Møller, H J Gundersen, A Mouritzen Dam, and H Pakkenberg
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014294/

[2] Acta Physiol (Oxf). 2006 Aug;187(4):495-501.
"Exercise is the primary factor associated with Hsp70 induction in muscle of treadmill running rats."
Noble EG, Ho R, Dzialoszynski T.
http://www.ncbi.nlm.nih.gov/pubmed/16866780

[3] J Biol Chem. 2004 Jun 11;279(24):25497-502. Epub 2004 Mar 25.
"Hsp70 Reduces alpha-Synuclein Aggregation and Toxicity."
Klucken J, Shin Y, Masliah E, Hyman BT, McLean PJ.
http://www.ncbi.nlm.nih.gov/pubmed/15044495

[4] J Biol Chem. 2012 Mar 16;287(12):9193-9. doi: 10.1074/jbc.M111.325548. Epub 2012 Jan 20.
"Curcumin prevents aggregation in α-synuclein by increasing reconfiguration rate."
Ahmad B, Lapidus LJ.
http://www.ncbi.nlm.nih.gov/pubmed/22267729

[5] November 23, 2001 The Journal of Biological Chemistry, 276, 44284-44296.
"Metal-triggered Structural Transformations, Aggregation, and Fibrillation of Human α-Synuclein
A POSSIBLE MOLECULAR LINK BETWEEN PARKINSON′S DISEASE AND HEAVY METAL EXPOSURE
Vladimir N. Uversky, Jie Li and Anthony L. Fink
http://www.jbc.org/content/276/47/44284.full

John

Hope all goes well
 

Wishing you all the best with your DBS, and thank you for sharing you insight into therapy offerings, your insight means a lot to us, lfac

Girija & all
 

Thank you first for this open discussion. I learned be more from this thread than I have in the past two years of research. I appreciate each of you for contributing.

Next, I offer good vibes and prayers for you, girija. I will have to agree with one of you who said that you will know when you are ready for DBS. My dad's favorite saying was "When in doubt . . .don't."

So best to you, girija. Hugs and keep us posted

Peggy

Girija,
We are all on your shoulder giving you extra strength and love.

Girija...prayers coming your way. You are an overcomer. By the way, my ground is plowed now..closer to being able to plant favas in March Love & prayers Aunt Bean

thank you
 

Hi All,
I am done with Part 1 of DBS, got home a couple of days ago and resting at home. Neurosurgery went well and waiting for the batteries to be inserted in another week and wait for two more weeks for programming. Thank you all for your good wishes and prayers, it means a lot to me.

Girija