Drug that Stops Progression of Parkinson's

Originally Posted by soccertese

you can always contact the author(s) of the paper or researcher via email,
i find that they usually respond.

Thanks for the tip.

[Conductor71]

This is all rather encouraging but I must caution that any time you read of a novel new treatment involving a particular gene and they extrapolate that into a potential new therapy for all of us with PD, that is not possible. They are assuming one genetic mutation is the model for all with PD. This sadly is not the case; has many different pathways and all we share in common is symptom cluster. The articles are misleading and usually there is disclaimer hidden amidst all the hype. For example, at the DDN site you will find the sentence:

However, the key is early diagnosis or knowledge of a genetic predisposition to the disease, says Freed.


Since they can't be bothered with those of us who do not have parents or sibs with PD to run genetic tests, it means very little to most of us.

Not all of us have alpha-syn aggregation. Frankly, specialists cannot even define what PD is now that our Hallmark Lewy Body is not toxic. Hate to be a downer, but all this genetic mutation based potential "cures" do not address the hard fact that scientists cannot even reach a consensus on what PD is.
How can they cure us, when they ignore defining what they are dealing with?

Laura

Originally Posted by Conductor71

This is all rather encouraging but I must caution that any time you read of a novel new treatment involving a particular gene and they extrapolate that into a potential new therapy for all of us with PD, that is not possible. They are assuming one genetic mutation is the model for all with PD. This sadly is not the case; has many different pathways and all we share in common is symptom cluster. The articles are misleading and usually there is disclaimer hidden amidst all the hype. For example, at the DDN site you will find the sentence:

However, the key is early diagnosis or knowledge of a genetic predisposition to the disease, says Freed.


Since they can't be bothered with those of us who do not have parents or sibs with PD to run genetic tests, it means very little to most of us.

Not all of us have alpha-syn aggregation. Frankly, specialists cannot even define what PD is now that our Hallmark Lewy Body is not toxic. Hate to be a downer, but all this genetic mutation based potential "cures" do not address the hard fact that scientists cannot even reach a consensus on what PD is.
How can they cure us, when they ignore defining what they are dealing with?

Laura

I know. I contacted the professor yesterday and asked him whether his results are promising for everyone or just a small subset of people with DJ-1 gene problem.

You say alpha-synuclein is not present in all PD patients ? A few days ago I thought I read somewhere that more than 80 % of PD patients have problems with alpha-synuclein.

[Conductor71]

Originally Posted by Diego24

I know. I contacted the professor yesterday and asked him whether his results are promising for everyone or just a small subset of people with DJ-1 gene problem.

You say alpha-synuclein is not present in all PD patients ? A few days ago I thought I read somewhere that more than 80 % of PD patients have problems with alpha-synuclein.

Diego,

Mere speculation. Unless something has profound has occurred, no standard measure exists for living patient, and the old standara of Lewy bodies upon autopsy mean nothing anymore. Did your source reveal how that 80% was arrived at? I may have missed something. I would love it if they had a valid and reliable measure in place.

Relying on Lewy Body formation as an alpha-syn measure is now what I would call bad science. Again there are people who have brains riddled with these clumps and never a tremor. We also have a genetic young onset PD with Park2 mutation that do not accumulate Lewy Bodies which are part of the aftermath of alpha-syn aggregation, toxicity, and neuronal death. Yet they look very much Parkinsonian; many of us with YOPD may have such a mutation but would never know it because those of us without a direct relative with PD are ignored by research. Never mind that only a tiny fraction of genetic PD cases (20 % over all) follow the classic Mendelian inheritance model.

This is why I get so annoyed by PD research. On the one hand they are saying that so few people have genetic mutations, so the vast majority of us are not worth testing. On the other hand, they will take a study like the one on DJ-1 and promote with abandon as a breakthrough for all of us. Just a wee bit of a problem, I find.

I have researched PD exhaustively for three years and decided that if they really had more heart in it and less ego we wouldn't be having this exchange right now. The CDC has no epidemiological data on neurodegenerative disease. Why is that? By keeping us ill and feeding us hope, we are the bread and butter of an industry. This is not a conspiracy theory, but the hard truth that in a Capitalist economy, disease is a commodity.

BTW, you are waiting on the researcher's reply?

Conductor71, unfortunately the researcher still didn't reply.

Originally Posted by Conductor71

Diego,
Mere speculation. Unless something has profound has occurred, no standard measure exists for living patient, and the old standara of Lewy bodies upon autopsy mean nothing anymore. Did your source reveal how that 80% was arrived at? I may have missed something. I would love it if they had a valid and reliable measure in place.

I don't know anymore where I read this. But I found this new one, for example: http://www.hindawi.com/journals/pd/2012/614212/

I am not saying all PD is caused by a-synuclein. But given all research I read, I do have the feeling that majority of PD is caused by a-synuclein. Of course, my opinion is based on current result. If current is wrong, so will be my opinion.

A week or 2 later ... still no reply. This professor is really an idiot. I have also been working in the academic world and whenever people contacted me about my research I always replied them. I wonder how people can be like this.