Hello not sure how this works

[Parksy]

We have been looking here for over a year now , it has helped us with so many different problems we have had. My husband has been for treated for CIDP for 12 months untill September 09 and was diaognosed with als. I get very concerned when i think of what is to come. He is taking part in some clinical trials in Sydney. We are just taking one day at a time.

God bless

 

[paleshia]

welcome parksy....sory you have a need to be here...you have our unrelenting support and prayers. vent, ask, and share..it really does help to know we are not alone.

 

[Twinsmom]

Hello Parksy-
Prayers to you and your husband. I'm so sorry for you both. This is an amazing support system. You will laugh, cry and celebrate life here.
Welcome!
Peace,
Melody

 

[Al]

Welcome Parksy. Hope we can be of some help.

AL.

 

[peter57]

Hi Parksy,
Welcome to the site , from another Aussie.
As others have said this is a great site, as you know.
There is lots of info here as well as having some laughs from time to time.

One question I have for you is what is the trial your husband taking part in?
We dont have many trials here so I am interested in any thing, like all of us that is happening to try and nip this in the bud.

Cheers
Peter

 

[Zaphoon]

Hi Parksy!

Welcome!

Zaphoon

 

[SUEZETTE]

H i Parksy,
Welcome, this is an awsome site, and wonderful people. You will find comfort here.
my husband was diagnosed with als 11/08 passed 10/09
my prayers are with you and yours. GOD BLESS

Suezette

 

[Chief]

Hello Parksy, I am new to this site but so very glad to have found it. I no longer feel alone in my struggle. Sorry though that we have to meet like this. May the good LORD Bless us all.

 

[Parksy]

to Peter 57 the trials that Parksy is doing are at the Prince of Wales hospital at Randwick in Sydney in there medical research center. The neurologist he is with there is professor Mathew Kievenan, when Parksy was diagnosed he was asked if he would like to be part of the trail. We had to go to Sydney once a month for 4 months where they did medical checks, then in January he started on the drug which is a sodium blocker, that is if he is on the drug it may be the placebo we won't know until the end of the trial which finishes in August. he also has been taking Rilutek since September.
hope this helps you
God Bless

 

[JennB329]

Parksy, welcome.
Although I wish you didn't have to be here (as with the rest of us), "welcome" is what you will most definitely feel here. Since my dad's diagnosed (3/27/09), this group of people have been my salvation... my life line. There isn't anything that you are going through or will go through that the angles here haven't already experienced. Let them guide you, let them hold you, let them hear you... they will listen.
Jenn

 

[handinhand]

welcome to the forum... sorry for the diagnosed....we are all here to help ... Linda