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Thank you dalvin!
 
I don't see anything for attachments, everything but that. I may just be tired and missing it.
 
I love your photos, Max. You have some great companions. :)
 
>I don't see anything for attachments, everything but that. I may just be tired and missing it.

you need to go down to the Go Advanced button, the below that the Manage Attachments button will appear, pick your files, don't forget to hit the Upload button, the write your msg and post it ...
 
Your Rocky is absolutely beautiful, Max. Thank you!
 
>Your Rocky is absolutely beautiful, Max. Thank you!

unfortunately, his story is a sad one.

our breeder brought him to us at 4 weeks old as a fading puppy expected to live a day or two longer. we nurtured him and just at 6 weeks he drank water from the dish - see picture.

from that moment on he became a total character :). at that time i was hosting an email list server for sharing setter pics. several hundred folks fell in love with him as i posted pics daily.

at 16 weeks he seized while in my arm out on the deck. acute renal failure. we took him to the vet for his trip to the Bridge two days later :-(
 

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Hi Nikki,
I will be happy to share the results of the tests. The originally did them in February but lost them so they have redone the tests on July 7th.
It's nice to meet you.


Here is an update:

I just wanted to let you know we got Steve's DNA Tests back and SOD1 is negative but the C90rf72 is positive.

Steve's breathing levels had been dropping rather slowly, about 3-4 points every 3 months for example if it was 72 then 3 months later it would be 69 but from April to July it went from 69 to 49 percent.
We went to Johns Hopkins on Monday 8/11/14 and it had went from 49 percent in July to 37.4 percent.

We are going to Washington D.C tomorrow by train, Steve has always wanted to see the White House so I managed to get a friend to arrange it since they stopped public tours awhile back.
We will be going on the tour on Saturday 8/16/14 and after that a tour of the Capitol Building.
We will be staying for 6 days so we will be seeing other sights also.

Trish
 
I am so truly sorry for the loss of Rocky, Max.
 
>Your Rocky is absolutely beautiful, Max. Thank you!

unfortunately, his story is a sad one.

our breeder brought him to us at 4 weeks old as a fading puppy expected to live a day or two longer. we nurtured him and just at 6 weeks he drank water from the dish - see picture.

from that moment on he became a total character :). at that time i was hosting an email list server for sharing setter pics. several hundred folks fell in love with him as i posted pics daily.

at 16 weeks he seized while in my arm out on the deck. acute renal failure. we took him to the vet for his trip to the Bridge two days later :-(

I am so truly sorry for your loss, Max. He was beautiful.
 
I am sorry. The good news is they are working hard on C9 because it is the most common cause of FALS and also can cause dementia. Down the road from you there is a study on the " natural history" of c9 meaning observational no intervention. If you are up for it it is a great experience.
Have fun tomorrow
 
>I am so truly sorry for your loss, Max. He was beautiful.

thank you ...
 
Here is an update:

I just wanted to let you know we got Steve's DNA Tests back and SOD1 is negative but the C90rf72 is positive.

Steve's breathing levels had been dropping rather slowly, about 3-4 points every 3 months for example if it was 72 then 3 months later it would be 69 but from April to July it went from 69 to 49 percent.
We went to Johns Hopkins on Monday 8/11/14 and it had went from 49 percent in July to 37.4 percent.

We are going to Washington D.C tomorrow by train, Steve has always wanted to see the White House so I managed to get a friend to arrange it since they stopped public tours awhile back.
We will be going on the tour on Saturday 8/16/14 and after that a tour of the Capitol Building.
We will be staying for 6 days so we will be seeing other sights also.

Trish

Thanks, Nikki
We are hoping to have a fun time, the pain is all the stuff I have to remember to arrange and bring. Luckily the MDA and ALS Association are loaning us medical equipment and it has been sent to the hotel. I really didn't want to drag a Hoyer Lift onto the train. :)

Steve's brothers and sister had planned on visiting us in November but they have all changed it to September due to his breathing change and he is beginning to lose his ability to talk.
 
Welcome Trish,
This is a great place for information or just to vent. I too have a zoo, 3 cats and 4 dogs, all rescues, their food costs more than mine, lol
 
Oh ,forgot to say there is a group for familial ALS on Facebook if you and your husband or your in laws are interested. There are people there both diagnosed with FALS but also those who know they are gene carriers or fear they might be.
 
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