Hello team,

I have a news to share with you. I live in Collingwood, Ontario and my family doctor is Peter. His wife stephanie was diagnosed with ALS about 2 years back. And gradually her health deteriorated and she was put on life support. Now, after administering an experimental drug on her, quite miraculosly she was walking back again a month ago and now I heard she is even cooking now. I do not know any details of this drug except that it costs about $500 per month for the dose. Besides money, it is still experimental and available only to select people. Her husband being a doctor, and being a member of ALS society of Canada, I guess he is on a different page.

After going throuigh a month treatment at a Kerala Ayurveda center, my mom didn't show any signs of improvement. Peter advised me to bring my mom here immediately, so I am going to India next friday. I shall be in Visakhapatnam, India till 14th of August. I am planning to go to Hyderabad couple of times for getting visa for my parents.

I am speaking with my doctor this week again before I am going to India next week.I shall post it here if I hear more details.  

Padma:

My sister lives in Woodland Hills, LA. She is looking for ALS support there. If it:s ok with you, could you please me your contact #, she shall call you. She is looking for support about ALS in US.

I can be reached at

705-293-0323

705-888-1246

891-2708330 (Visakhapatnam)

Gopal

--- On Fri, 7/18/08, gauravjain_80 <gauravjain_80@...> wrote:

From: gauravjain_80 <gauravjain_80@...>
Subject: [ALS_India] Re: Support group
To: ALS_India@yahoogroups.com
Date: Friday, July 18, 2008, 2:08 PM

Hey Padma,
I think it's a good idea.
Although, I am not sure how many of the group members are available
online on those days?
Let's leave the question to the house and see what responses we get
in a week's time.
So people, wake up and post your question, concerns, queries etc.

I have been talking to a lot of CALS and PALS who do not have
Internet access. For them, phone works best. It's amazing to see how
there are so many people out there who do not even understand what
is happening to their bodies and how to cope with it.

Padma, if you come across any CALS who have their PALS in India,
please forward our group address and let's talk to their PALS and
provide some support.

I know for sure that emotional support is the biggest requirement.
I for 1 know that I haven't greived the loss of my father still.
Blame it on situation, blame it on the timing. I guess I just didn't
get time from being the stronger one for everyone to depend on.

Let's see how many people respond to this message and let's tae from
there..

Thanks for all your support Padma...

We are glad to have you on board with us.

Cheers.
G.

--- In ALS_India@yahoogrou ps.com, Padma Varanasi
<padma.varanasi@ ...> wrote:
>
> Hi Gaurav.
>
> I'm back in Los Angeles.
>
> Once a month we have support group where the patients and their
care
> givers meet and discuss not only
> about what is available but also emotions they are going through
and
> the stress, worries. It is more pyschological support
> too.
>
> Since everyone in india spread out instead of meeting real-time,
I
> thought we could set aside a day/time per month and discuss
> over internet? Say the 3rd thursday of the month or something
like
> that.
>
> IT is really nice to be able to talk about our feelings, worries,
and
> also get the knowledge on ALS and what is available resource wise
etc.
>
> Also, being in the US I'm happy to help in anyway...
>
> I'll be in INdia in August.
>
> Let me know your thoughts.
>
> Hope your mother is doing well.
>
> Regards,
> - Padma
>