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[Iskander] Hello I'm Dr. John Iskander,
welcome to CDC's Beyond the Data.
As part of this month's Grand Rounds Session
on the ALS Registry, I'm here today
with Becky Kidd a person living with ALS.
Thank you very much for joining us today.
[Kidd] Thank you for having me, John.
[Iskander] So, Becky could you just share
with us your personal experience?
[Kidd] Living with ALS, sure.
I was diagnosed about five years ago,
a little over five years ago in January 2012 just
down the street at the Emory ALS clinic by Dr. Jonathan Glass.
I celebrated which is weird phrase, my five year anniversary
in January but something that people really need
to be aware of, this disease is fatal.
It's terminal there are no treatments.
There are no cures.
And 80% of the people who have ALS die within 3 to 5 years,
so as I hit my five year anniversary, it occurred to me
that 80% of the people who are diagnosed when I was, are gone.
So it's a tough disease to live with without a doubt.
Mine started in my right leg with some twitching
and some cramping and so I have what's called lower limb on-set
which again, if you have to have this damn disease,
that tends to be a sign of a slower progression so the fact
that in five years into it, I feel pretty fortunate
that I've made it this far.
But things are starting to change, clearly.
I need to probably spend more time
in a wheelchair per my doctor's advice as much as I wanted to
hit him over the head with my cane when he told me that.
But it's the right thing to do my hands
and arms are getting really weak so you know
when you can't do things like pour a cup of coffee
for yourself anymore or twist the cap off
of a bottle of water.
It's, it's...
You don't realize how critical all those systems are
to just day-to-day living until those things
start being taken away from you.
[Iskander] This is really a remarkable perspective
that that you have on this.
I'm not sure I would frankly have that perspective.
You shared earlier about what you said were some
of the gifts this has given you.
[Kidd] Yeah [Iskander] I think people would be very interested
to hear about that.
[Kidd] Yeah one of the things I sometimes say when people ask me
to talk about this is, believe it or not, there are gifts
with disease, now of course you don't want
to have the disease but several gifts.
One is that nonsense just goes away.
You never feel more in the moment then when you are living
with a terminal disease.
The nonsense at PTA meetings and gossip in the neighborhood
and around the pool all that just goes away
because it's simply not important.
And what God has taught me is to stay in the moment,
appreciate what you have right now and love it.
And appreciate everything you do have instead
of everything you're losing.
And that's not always easy to do don't get me wrong.
This thing it's a horrible disease and...But there are
gifts associated with it.
One of the gifts that I tell people is,
I have a 14-year-old son.
He was eight years old I was diagnosed and we waited a while
to tell him because of my progression was
so slow...it wasn't impacting his life.
But we've told him obviously a few years ago and a gift as much
as you don't want your child to go through this,
you watch your child grow.
You watch his heart expand.
You watch his ability to deal with stress and sadness grow.
He, I know I won't be here someday when he gets married
or to meet my grandchildren.
But what I have right now is a great gift with him
and my husband is just an amazingly real deep
and loving relationship in the here and now
and the nonsense just goes away.
And that another gift is, I've met some amazing people
who are living with this disease.
They call it kind of the nice person's disease?
I don't know.
I wouldn't apply that to me.
I'm kind of wench sometimes, but truly some
of the nicest people I've ever met are people living with ALS.
I don't know why that is.
I'm sure in the registry they should probably do a study
on that but, that's one of the gifts as well.
[Iskander] So you you mentioned the registry and
and I think many of us who work
in public health would would be interested
to hear a patient's perspective on the registry
of what your experience is and how you see it.
[Kidd] Yeah, well again I think the registry is essential.
Um... Again, ALS is a rare disease
or what you might sometimes call an orphan disease.
So there's typically 30,000 of us living with it
at any given point in time
and about 30,000 people a year die of it.
But we have to understand what causes it.
How do we create a treatment and a cure for this thing?
And I know that might not happen in my lifetime
but it's essential and that's
where the ALS registry is playing a key role.
Obviously, gathering essential data,
in working with all of the neurologists.
I've sat in several of their annual meetings...
And I've been just so impressed by how these neurologists
from around the country come together to share their findings
and their learnings, to recruit for trials, so believe it
or not you think anyone would sign up for ALS clinical trial
in a heartbeat, but that's not the case it's actually very
difficult to recruit people to participate
in these trials for a lot of reasons.
One because of its proximity.
A lot of people feel like, I don't have that much time left,
I'm not going to, you know take the risk of having
that time shortened by being in a trial or whatever.
So where the ALS Registry is just essential is
to bring the community together around this
so that we can all work together in terms of generating interest,
generating data and generating participation
in clinical trials.
[Iskander] Are there any other perspectives on either research
in general or on on clinical trials again,
many of us are much more used to the perspective
of were looking at the results.
Are there any additional insights in those areas
that you'd like to share?
[Kidd] Well yeah, you know I think again,
being a person living with ALS I know the research is going up
and getting better and more of it which is good.
But t's, I'm not going to lie, it's very frustrating
when you do hear about the research
that I don't know the exact statistic but most
of it are still being done
in fricking mice, and not in people.
So we need to figure out how to speed this up
and get these trials and get these potential treatments
in people living with ALS.
And were willing to take that risk.
Here in Georgia the Right to Try Bill was passed
about a year or so ago.
And you know when you're living with a fatal disease,
where there are no options except prayer, you are willing
to try anything and so I would hope that our doctors
as well be willing to take that risk as well.
But, a lot of it is also controlled by the FDA
and all the bureaucracy
that surrounds getting something to market.
I think, I can't remember the exact statistic
but I think it's something like, to get a drug to market,
a new drug is something like 50 million dollars in 10 years.
I might have that wrong.
But again, when you only have a 3 to 5 year life span...Come on,
it's not gonna' help you and my philsophy
it's probably not going to help me in my lifetime
but I'm here to help everyone behind me and as much as I can
so I consider myself one of the head Guinea pigs
over at the Emory Center but, we got to speed this up.
And I think that ALS Registry it will be a really critical part
of that.
[Iskander] Well thank you very much
for for sharing those those very important perspectives
with us today.
[Kidd] You're quite welcome, thank you.
[Iskander] Please join us next month for Beyond The Data.
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