Parkinson's Disease Tulip


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Old 11-23-2013, 04:27 PM #11
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Default 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?
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Old 11-23-2013, 04:37 PM #12
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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.
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Old 11-23-2013, 07:08 PM #13
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Default 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
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Old 11-23-2013, 07:45 PM #14
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Default 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
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Old 11-23-2013, 08:57 PM #15
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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
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 11-24-2013, 03:31 PM #16
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Default Hope all goes well

Quote:
Originally Posted by girija View Post
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
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
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Old 11-24-2013, 04:07 PM #17
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Default 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
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Old 11-24-2013, 09:54 PM #18
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Girija,
We are all on your shoulder giving you extra strength and love.
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Old 11-27-2013, 08:24 AM #19
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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
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Old 12-01-2013, 12:28 PM #20
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Default 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
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