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Topic Possible test for Parkinson's Disease Go to previous topic Go to next topic Go to higher level

By LotsaBob On 2012.05.17 12:08
My wife sent this to me the other day. This web-site is rather long.

www.foxnews.com/health/2012/05/16/earlysignsparkinson-might-be-seen-in-colon/#ixzzlv2dwfnlf

This sounds like the experts may be on to something.

By karolinakitty On 2012.05.18 09:43
I saw this too Bob....this comes from another study that has been like 20 years in the works with the alpha-synuclein..

I posted a while back about the development in Alzheimers for the same issue as well as how they test for breast cancer using the synucleins also....

Also a few weeks ago I posted about the Gene therapy talk Dr. Beck from Parkinson's Disease Foundation gave in the chatroom. I have had the opportunity to chat with him and follow him on twitter....

They are now, after 20 years, realizing that these synucleins are a better key for testing procedures..... it may be 4 years before anything develops as they are gathering info from both older and younger onset patients. It seems that the testing procedures have been lax in following up in "years"... in other words they were only doing studies in 2 year periods... following patients for only 2 years after testing to see if they had PD or not... turns out they weren't waiting long enough and have developed new studies lasting 4 -6 years and are having better results from those.....

So those who are recently diagnosed, but can figure they have had it for 10 years or more like us....will probably get an earlier diagnosis and be able to slow the progression down faster than many of us have had to endure.....

Also in the pipeline of gene therapy.....it will be quite far off in the distance for any treatment coming to market... the testing in the states is just beginning... they want "pure" PDers without any possible "outside" influences like TBI, Brain surgery, chemical exposure and gene markers....So anybody that has done the 23andme gene test and has the marker will not be used for studies...as well as the other influences I spoke of.....

The stem cell research, that is the "hand" stem cell should be evolving more also...but they too want "pure" patients....and it will be a 4-6 year study also.....

These are all tests and studies which could bring hope... but I take them as a wait and see.......:)

By lurkingforacure On 2012.05.21 11:31
karolinakitty, you mention "slowing down progression"-how are you doing that?

By karolinakitty On 2012.05.21 22:35
OH not us lurking..lol..sorry..guess that read wrong...

They are thinking that with these synucleins..if a test is available...and they are able to "catch" it earlier...that the progression won't be as fast because by getting gene therapy the "virus" that they put in the brain will slow down the progression or possibly stop the progression..at this point most of the gene therapies have temporarily halted progression by 2 years...that's why they want to run the tests longer 4-6 years to see what can be done...

From what i read i assumed there were only 2 types of gene therapy...but through this webinar I learned there are actually 5 different types..and 5 different processes and "viruses" ...

Sorry about the misunderstanding.....

The only thing we have slowed or reversed actually are the dementia issues and I did write a lot about what you can do for that....but he is as of today down to 0mg of Requip and even though he's going through sheer hell with withdrawl today...we know in a few days he will feel much better than he has.....we thought the disease was progressing..so did our former neuros...but in reality the Requip was causing all the issues and his overall progression isn't as bad as we originally thought.....

By lurkingforacure On 2012.05.21 23:05
I am very happy for you! I wish we could get off the damn mirapex, we have tried twice and it was hell and my husband just could not take it, even titrating down slowly. I only know two people who PD who have gotten off mirapex and it took each of them years. I can't help but wonder what my husband's PD would look like if he were off of it.

By karolinakitty On 2012.05.23 16:40
It has been months trying to get off the Requip....Jim has gone through hell too trying to get it done....what helped us was this....our LNPN....our neuros nurse worked slow and gave us little "goodies" to help.....she increased and gave us SinemetCR with comtan...Stalevo did nothing but the two separate ones did...we had sinemetIR for in between tremors....we stepped down in HOURS not days....it was a pain in the butt trying to figure out daily dope schedules but well worth it...also for the withdrawl symptoms..she first prescribed valium..but it didn't really help...she then gave us a script for clonazepam 1mg..worked much better....I'm telling ya'll it was like getting off heroin...one thing our nurse considered if this last routine didn't work...was to be hospitalized...with actual methadone withdrawl help.....so both these drugs Requip/Mirapex can be sooooooo bad...

Would be nice if he would consider it again with a pattern similar to what we did...it was long and painful....i really mean painful.....his tremors worsened, the involutary movements worsened...just all PD symptoms were exhibited during "off" times and severe...he really thought he was going to die...but then we did a silly thing AFTER he went down to 0mg of Requip...I left the sinemet schedule as it was and he ended up with horrible dyskinesia that lasted like 8 hours....thank God for our support through out the country...it so happened another parkie checked in on us by text message....we immediately got with her on Skype and her and her caregiver walked us through a massage/physical therapy treatment for the dyskinesia and after about an hour of massaging and just about ripping his feet off....it lessened...gave him a clonazepam and he slept for 4 hours...more than he had during the whole withdrawl....
NOW...this morning he slept until 8am...are way down on the SInemet and he feels awesome.....

I wish the medical world could see HOW the PDers and their family/caregivers get themselves out fo the predicaments THEY put us in....

"let's just up the dosage"..."let's not try any other drugs" "let's not go against the grain of A-typical schdules of drugs"

Phooey on them...we got this....I love our current medical folks...they listen...they understand he knows his body... and they give us their knowledge combined with our input to keep at bay the best we can the progression.....

By the way here's a link to a new Mirapex lawsuit..interesting read.....

http://www.resource4thepeople.com/defectivedrugs/mirapex.html

By dkleinert On 2012.05.24 21:55
karolinakitty: Where do we go to volunteer for those gene therapy trials? My pd husband is "pure" I think....


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