DM Death Statistics in the GSD among the PDB members - Page 15

It is reassuring in more than a few ways. 

I wonder why no one mentions the doctorate research of Pamela Johnston at Glascow Univ.? 

I also think because of the confusion created by the disparate research results in the US, so far, a wise next step would be to have an audit, something like this:

http://www.hqip.org.uk/what-is-the-difference-between-clinical-audit-and-research/
http://www.humanresearch.msu.edu/audits.html/

i hadnt heard of it, either.

She is mentioned in the Fred Lanting article dated 2010, called "The New Knowledge of DM ('GSD Myelopathy')", I linked it somewhere else, too. Any way,  he outlines about the update in DM research,  http://www.fredlanting.org/2010/02/the-new-knowledge-of-dm-“gsd-myelopathy”/.

I am thinking a type of independent audit would give a blueprint, an assurance to potential, bigger-dollar funders of transparency, including the difficulties. It is okay to have difficulties, if you have thoughts on how to address them and can back them up. Just my 2 cents (and a little experience.)

---> This is compromised in the case of DM, and the dog is unable to sense that its rear feet are not in the right place or doing the right thing, and likewise is unable to exercise normal control over them
As I said in an earlier post- a sensory loss which is a hallmark of  GSDM! In ALS there is no sensory loss.

--->Proprioception was severely affected either unilaterally or bilaterally, depending to some extent on the duration of disease.

None of that in ALS, either. Perhaps now you can understand why I say that GSDM and corgi DM are NOT the same disease!

--->Unpublished reports from the U.K. indicate that, of the dogs diagnosed with DM, 88% of those still walking at 12 months and 80% of those walking at 18 months after symptoms were recognized, were being treated with aminocaproic acid, at least

I may  have worked on that report with people in the UK, if that is the same one, supplying them with info from questionnaire's I had made, when we first began the support group years ago, although I believe we found 80% of the dogs walked, so maybe it was a different study than the one we worked on together.  We gathered data and poured over it for years. We found that the percentage of dogs mentioned in the article on Dr Clemmons' program walked longer than untreated dogs. A friend of mine has taken over the stats and has the DM database now. http://www.DMdatabase.com

Actually, the earliest case of DM was 3 yrs of age. The disease showed up and went back into remission until 5 yrs of age, and then progressed like gang busters. Missie T was dx at 4 1/2 yrs of age, had all the tests and a positive Flash Test (which was found to have the same efficacy of the other more serious tests, so it was a good diagnostic tool.)  If the truth be told, another wouldnt have picked up on the disease as early as I did, having become totally neurotic after my experiences with Jack Flash. Another probably wouldnt have picked up the disease until a year later or so, the signs were so damn subtle, so she would actually have been 5 Yrs old when she was dx, if anyone else owned her.  However, she lived to the age of 11 years and one month. Thats a long time for a dog to have DM, with quality of life.  There was another gal in my support group who also made a very early pick-up ( as she actively had another dog with DM when she was in my support group-OMG- can you imagine having 2 DM dogs at once????) , had all the rule in tests and a positive Flash Test, and her dog walked for another 7 years until they got into a horrid car accident, after whic h Beulah never walked again. The car was totaled :(  I do believe the key to Missie T's and Beulah's longevity, despite DM, is because we had both been down that road before, were fortunate enough to be able to say *in for a penny, in for a pound* and utilized the entire program. People in my support group swear by it, and although there is no cure, it does seem to put the dogs into remission for a while.

I have spoken with Fred Lanting on a few occassions. He also interviewed me regarding DM.

--->I am thinking a type of independent audit would give a blueprint, an assurance to potential, bigger-dollar funders of transparency, including the difficulties.

And where would one get the funds to even do that?? We cant even get enough funds to continue research, in this economy :( 

 

Thanks for the link to the article. I found it very interesting.
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry
BE PROACTIVE!
http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate  


It is still true today. A friend of mine has the DM database, and she is keeping the stats, now. A
Perhaps now you know why I say Corgi  Perhaps now you have a bteer understanding of why I am so adament that GSDM is not the same as the DM of the corgi

--- >But Corgi's experience sensory loss too, and their proprioception is impaired in just the same way. Maybe I am missing something. 
Maybe I am missing something. 

I dont know much about Corgi DM BUT if that is the case, then I REALLY do NOTunderstand how Dr Coates can claim that DM is ALS, and I am missing something, too!! Again, in ALS there is no sensory loss, no loss of proprioception.  People with ALS dont drag their feet, they dont high step, they dont become incontinent-they maintain bladder and bowel control !!! (Do Corgis become incontinent, as well?) If corgis have sensory loss and proprioception difficulties and they do, in fact, become incontinent, I am just thunderstruck that it is being called ALS?????????I dont know how to reconcile this... (Well I guess it could be called anything one would want it to be called, but that doest mean it is necessarily correct.)

. This is VERY puzzling, to me. If Corgis have sensory loss ans. I cannot for the life of me figure out WHY she would say it is the same disease as ALS?????????? I I know the diagnostic test results are very different between Corgis and GSDS ( I had posted them in another thread somewhere on the board) and while Corgi DM diagnostics may be more like ALS diagnostics, the fact that you say there is sensory loss and proprioception difficulties makes me wonder how corgi DM could be ALS??? Someone sent me an email in which Dr Coates claims there is no sensory loss. HUH????
Now I am REEEEEEALLY confused...
 

  Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry
BE PROACTIVE!
http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate  

Marjorie, funding for an audit would be included in any request to any foundation as a needed first step. So, it would be necessary to determine what is the acceptable and customary audit organization to use, and their cost.

Oh, lordy, Bee- audit??? you're talking the M-m-m-m-m-m-a-t-h word?    I know my own limitations and couldnt add 3 figures together and get the same answer more than once,  if one held a gun to my head :(    I suck at anything to do with m-m-m-m-m-m-a-t-h, which is why I gave the info to the group in the UK, from the questionnaire, as I could never figure out PERCENTAGES!!! My webmaster for the GSDBBR does the summary analysis- he put a program into place that does it as I cannot even attempt percentages! I told you I know zero about fundraising.  I didnt know there were audits to be done, either. 

I keep walking into brick walls. I know my limitations and know what I am good at- and thats educating people about GSDM, pushing for GSDM awareness and gathering info pertaining to DM. I know zero about DM of other breeds, as far as symptoms, etc, and am only familiar wiith  diagnostic test results. You could have knocked me over with a feather, I was so shocked, when Abby mentioned sensory loss in corgis.  I am totally stunned- it makes less sense to me, now, then it did before, and it made no sense, before..

My webmaster of the German Shepherd Dog Breed Betterment Registry (www.gsdbbr.org) is writing the code for questions pertaining to the OFA DM DNA Test, ie test results, and other questions pertaining to the lifetime of the dog, if it ever went on to develop DM, regardless of status and was the dog necropsied. If one keeps their confirmation email, after entering their dog, they can always go back and edit their entries to update it. If not, with a letter of permission, I will update it. The only thing I will ever add is if people do not know the final generations of a pedigree- if I know them, I will add them to get a more complete picture of the lines. I am also asking about any progeny that were tested. The OFA DM DNA Test wasnt around when I started the GSDBBR , and it needs to be on there, for the believers. Does anyone know how many numbers are assigned to each dog tested in the test number for the tests? Entries must have their original number and it must be recorded so made up numbers cannot be put into the database. Is the test number assigned to each doga 6 digit number? 7? 14? 20?I just might leave a 250 space entry field so multiple numbers of progeny can be entered, in case people decide to test litters. It will take a while to get the coding done, as we must make major shifts to the positions of questions on the database, and add fields to the summary analysis page, which is an undertaking once everything is in place. Now, if there were only more entries than readers.... If we had the amount of entries as their are lookers, the GSDBBR would be quite a powerful and a wonderful tool for breeders. I honestly dont understand why people dont enter their dogs- no dog lives forever- every dog dies of SOMETHING, so why not make that info available so it wont be doubled up on?
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry
BE PROACTIVE!
http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate