ALS Chat Clinical Care Experts
dr-cwik (Feb 13, 2007 1:45:48 PM)
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ChatMaster (Feb 13, 2007 1:46:06 PM)
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ChatMaster (Feb 13, 2007 1:46:14 PM)
hello valerie
Annie (Feb 13, 2007 1:46:37 PM)
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dr-cwik (Feb 13, 2007 1:46:38 PM)
Hello Chatmaster.
Annie (Feb 13, 2007 1:47:45 PM)
Good afternoon!
dr-appel (Feb 13, 2007 1:50:34 PM)
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dr-appel (Feb 13, 2007 1:51:08 PM)
Many thanks, Penny, for all your help!
dr-cwik (Feb 13, 2007 1:51:08 PM)
Welcome, again, Stan
ChatMaster (Feb 13, 2007 1:51:32 PM)
thanks Dr. Appel
dr-appel (Feb 13, 2007 1:52:15 PM)
Valerie, it's good to be aboard, but you may have to hold my computer-illiterate
hand during the process.
dr-cwik (Feb 13, 2007 1:52:55 PM)
You're doing great, Stan!
Annie (Feb 13, 2007 1:53:56 PM)
Thank you both for taking time out of your busy schedules for this today - I
know that many people were looking forward to the opportunity to chat with you
both.
l-h (Feb 13, 2007 1:56:15 PM)
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ChatMaster (Feb 13, 2007 1:57:56 PM)
hello l-h
ChatMaster (Feb 13, 2007 1:58:11 PM)
Welcome to the ALS Clinical Care Experts Chat!
ChatMaster (Feb 13, 2007 1:58:33 PM)
We will be starting in 2 mins! Do you have a question for the doctors? If so
I will put you first on my list.
l-h (Feb 13, 2007 1:59:48 PM)
Not right now.
ChatMaster (Feb 13, 2007 2:00:14 PM)
ok thanks,
ChatMaster (Feb 13, 2007 2:00:38 PM)
Hello everyone! Welcome to the ALS Chat with Clinical Care Experts Dr. Stanley
Appel and Dr. Valerie Cwik.
ChatMaster (Feb 13, 2007 2:01:02 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please
type the following "ChatMaster, I have a question" and I will add
you to the list of chat names and call on people to ask their questions one
at time.
ChatMaster (Feb 13, 2007 2:02:39 PM)
Dr. Stanley Appel, a neurologist and neuromuscular disease specialist, is a
long-time MDA research grantee and clinician, as well as an MDA Board member.
ChatMaster (Feb 13, 2007 2:02:50 PM)
Dr. Appel is chairman of neurology and co-founder of the Methodist Neurological
Institute, where he’s also director of the MDA/ALS Center and co-director
of the MDA Neuromuscular Clinic.
ChatMaster (Feb 13, 2007 2:03:11 PM)
Dr. Valerie Cwik is MDA's Vice President of Research and Medical Director.
ChatMaster (Feb 13, 2007 2:03:24 PM)
Dr. Cwik is a neurologist and has an extensive background in neuromuscular disease
management and research. She previously was the director the MDA/ALS Center
at the University of Arizona in Tucson, AZ.
ChatMaster (Feb 13, 2007 2:04:12 PM)
Let's start with a question we received previously
ChatMaster (Feb 13, 2007 2:04:28 PM)
I have been trying to follow along with all of the announcements made about
MDA's collaboration with ALS TDI. What does this mean for me, as a person with
ALS?
dr-appel (Feb 13, 2007 2:05:11 PM)
Is that question for me or for Dr Cwik?
dr-cwik (Feb 13, 2007 2:05:28 PM)
Dr. Appel - why don't you take this one?
ChatMaster (Feb 13, 2007 2:05:35 PM)
Let's start with you Dr. Appel
dr-appel (Feb 13, 2007 2:09:52 PM)
This is one of the most exciting times for ALS patients because of the potential
which the collaboration between MDA and ALS TDI will mean for therapeutic intervention.
Large sums of money have been invested in this collaboration from Augie's Quest
as well as the MDA and ALS-TDI. An outstanding Scientist Dr. Steve Perrin has
been hired to lead the effort of ALS-TDI to bring novel therapies to patients
with ALS. Dr. Perrin and his team will start with developing novel approaches
to the animal model of ALs, and then begin to examine ALS patient tissues to
define the factors that contribute to neuronal injury, and then will apply this
knowledge to the development of new therapies on a scale that has never before
been possible.
ChatMaster (Feb 13, 2007 2:11:07 PM)
Dr. Cwik do you have anything to add to this answer from Dr. Appel?
dr-cwik (Feb 13, 2007 2:12:17 PM)
As Dr. Appel mentioned this is a very exciting time. What this collaboration
provides is hope that new targets for treating ALS, and drugs that work against
these targets, can be identified. The hope is to get new potential therapies
into clinical trials as rapidly as possible.
ChatMaster (Feb 13, 2007 2:12:48 PM)
Thank you!
ChatMaster (Feb 13, 2007 2:13:11 PM)
Annie do you have a question for either Dr. Appel or Dr. Cwik?
francis (Feb 13, 2007 2:13:32 PM)
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ChatMaster (Feb 13, 2007 2:13:47 PM)
welcome Francis!
ChatMaster (Feb 13, 2007 2:14:02 PM)
If you would like to ask a question please tell me.
francis (Feb 13, 2007 2:14:16 PM)
yes I have a question
ChatMaster (Feb 13, 2007 2:14:28 PM)
I will put you on the list after Annie
ChatMaster (Feb 13, 2007 2:14:31 PM)
thanks!
ChatMaster (Feb 13, 2007 2:15:40 PM)
Dr. Stanley Appel, a neurologist and neuromuscular disease specialist, is a
long-time MDA research grantee and clinician, as well as an MDA Board member.
Dr. Appel is chairman of neurology and co-founder of the Methodist Neurological
Institute, where he’s also director of the MDA/ALS Center and co-director
of the MDA Neuromuscular Clinic.
l-h (Feb 13, 2007 2:15:51 PM)
I have a question Chartmaster. Question for Dr. Cwik. I was diagnosed in April
'05. Lately I have had trouble sleeping because the toes of my right foot are
stiff and I feel like I need to press down on them constantly. How might I resolve
this problem. (Whoever said there is no pain with ALS is absolutely wrong.)
Annie (Feb 13, 2007 2:16:11 PM)
As you know, a diagnosis of ALS is completely overwhelming. What do you think
are the first clinical steps someone should take when beginning to manage their
own care? What medical professionals should be on my personal care team?
ChatMaster (Feb 13, 2007 2:16:17 PM)
ok great, Dr. Cwik please reply
ChatMaster (Feb 13, 2007 2:16:31 PM)
let's reply first to Annie and then to l-h
ChatMaster (Feb 13, 2007 2:16:38 PM)
Francis will come after l-h
ChatMaster (Feb 13, 2007 2:20:51 PM)
thank you for your patience Annie and l-h
ChatMaster (Feb 13, 2007 2:21:11 PM)
your questions will be answered soon by Dr. Appel and Dr. Cwik
dr-cwik (Feb 13, 2007 2:21:13 PM)
ALS is a relatively rare disease, so it is important to find doctors and other
medical professionals who are knowledgeable about the disease to help guide
you through the process. A neurologist, physical therapist, occupational therapist
and other clinic team members can assist you with the physical and medical aspects
of the disease. There are also emotional aspects to address, for both you and
your family member. Your MDA clinic is an excellent resource to help get you
started. In addition to the medical team, the MDA Health Care Service Coordinator
can provide you with printed information about ALS and resources that are available
to you.
dr-cwik (Feb 13, 2007 2:22:14 PM)
l-h: by stiffness in your toes, do you mean that the toes are cramping?
ChatMaster (Feb 13, 2007 2:22:16 PM)
Thank you Dr. Cwik for answering Annie's question!
l-h (Feb 13, 2007 2:24:56 PM)
No. the toes are not cramping; they are stiff and I feel like I need to press
them down. My legs and arms do cramp on a daily basis, but the foot problem
is causing my lost sleep.
dr-cwik (Feb 13, 2007 2:26:31 PM)
l-h, You may want to try stretching the toes to see if that helps relieve some
of the stiffness and discomfort. You may also wish to talk with your therapists
or an orthotist. They may be able to design some sort of brace or support to
help stretch the toes.
dr-cwik (Feb 13, 2007 2:26:42 PM)
Dr. Appel, if you have any thoughts, please weigh in.
dr-appel (Feb 13, 2007 2:26:48 PM)
Anne: Since breathing is so important, especially in ALS, I would also add a
lung specialist, a pulmonologist, to the team so that we can provide optimal
care and prevention of respiratory problems. Also, a good internist or family
practioner should be available to help treat any infection that may arise.
Annie (Feb 13, 2007 2:27:12 PM)
Thank you.
francis (Feb 13, 2007 2:27:30 PM)
Can I ask my question now?
ChatMaster (Feb 13, 2007 2:28:11 PM)
l-h, are you done asking your questions?
dr-appel (Feb 13, 2007 2:29:19 PM)
Most often the stiffness in the toes would respond to medication like baclofen
which is used to treat cramps. However, I have taken care of several patients
with the stiffness may not respond to medications like baclofen, but may respond
to medications used for stiffness seen in other disorders such as Parkinsonism.
l-h (Feb 13, 2007 2:30:01 PM)
I do go to PT, and that stetching hasn't helped. What about a cortazone shot?
I also take baclofen.
dr-appel (Feb 13, 2007 2:31:11 PM)
A cortisone shot is unlikely to help and may in fact do harm if it is repeated
over the long term.
dr-cwik (Feb 13, 2007 2:31:17 PM)
I'm not certain that a cortisone shot is indicated.
dr-appel (Feb 13, 2007 2:32:56 PM)
Also, I don't know what dose of baclofen you're on, but the dose may have to
be increased to help with the toe stiffness, especially at night.
ChatMaster (Feb 13, 2007 2:34:19 PM)
does that help l-h?
l-h (Feb 13, 2007 2:35:20 PM)
I'm taking 4 5mg pills/day, 2x day. I will ask my neurologist about a parkinsons
drug; he also treats parkinsons. Thank you.
ChatMaster (Feb 13, 2007 2:35:31 PM)
go ahead with your question Francis
francis (Feb 13, 2007 2:35:40 PM)
Hello
francis (Feb 13, 2007 2:35:49 PM)
Someone recommended a product to thicken liquids. In ur experience, does this
help prevent choking in people with ALS?
dr-appel (Feb 13, 2007 2:37:16 PM)
When ALS patients begin to have problems with swallowing, it is usually with
"thin" liquids such as water. Thickening liquids really can make a
difference, and may clearly prevent choking !!
francis (Feb 13, 2007 2:37:53 PM)
thank you
ChatMaster (Feb 13, 2007 2:38:19 PM)
I have another question that came in before that chat
dr-cwik (Feb 13, 2007 2:38:30 PM)
I would also suggest talking with a speech therapist, who is also an expert
in swallowing. This person can give you other tips if you are having difficulty
with your swallowing.
francis (Feb 13, 2007 2:38:47 PM)
thank you doctors
ChatMaster (Feb 13, 2007 2:39:15 PM)
Here you go: " I have ALS and am having lots of issues with neck weakness.
Are there exercises that you can recommend that would help strengthen my neck?"
dr-appel (Feb 13, 2007 2:39:51 PM)
Over the years we have not had much success with exercises to "strengthen
the neck."
francis (Feb 13, 2007 2:41:01 PM)
i have another question
l-h (Feb 13, 2007 2:41:03 PM)
My PT does some manipulation of my neck, and so far it has helped somewhat.
dr-cwik (Feb 13, 2007 2:41:17 PM)
A neck brace (and there are a number of different types) can help support the
neck. For situations such as riding in the car, a neck brace can help prevent
the head from flopping forward onto the chest. A neck brace is also helpful
for activities such as reading, to prevent neck fatigue. There are some light-weight,
adjustable neck braces that individuals find to be both comfortable and supportive.
ChatMaster (Feb 13, 2007 2:41:21 PM)
please w8 francis
ChatMaster (Feb 13, 2007 2:42:05 PM)
ok please proceed with your question Francis
dr-appel (Feb 13, 2007 2:43:10 PM)
I agree totally with Dr. Cwik about the value of neck braces. Also for i-h I'm
always concerned about neck "manipulation," since I've taken care
of patietns with many diseases including ALS where neck manipulation has gotten
the, into trouble.
dr-cwik (Feb 13, 2007 2:43:55 PM)
I am not a fan of neck manipulation, either.
ChatMaster (Feb 13, 2007 2:44:50 PM)
l-h do you have any questions about neck manipulation?
francis (Feb 13, 2007 2:46:15 PM)
I am currently using a bi-pap at night, but I was told that some people use
it in the day too. Is this a common practice??
l-h (Feb 13, 2007 2:46:33 PM)
My PT actually uses pressure points and not so much manipulation. So far it
has helped somewhat
dr-appel (Feb 13, 2007 2:49:09 PM)
Yes, many of my patients only are able to use BIPAP for 3-4 hours at might,
and for those patients we do recommend their using it for 3-4 hours during the
day. The key is having the correct mask that fits properly, and allows people
to watch television or read. We find that the SWIFT mask is most helpful in
this regard. Remember that the major benefit of BIPAP requires usage for at
least 6-8 hours/ 24 hrs.
dr-cwik (Feb 13, 2007 2:49:18 PM)
Many individuals use bi-pap during the daytime as well as at night. If you are
feeling fatigued during the day, using bi-pap may help improve your energy level.
The nice thing about non-invasive ventilation, such as bi-pap, is that you can
use it as much or as little as you need.
Annie (Feb 13, 2007 2:49:49 PM)
How do you know how much you need to wear the bi-pap?
dr-appel (Feb 13, 2007 2:51:09 PM)
You should start with a goal of 6-8 hours, but as Dr. Cwik just mentioned ,beyond
that point you can use it as much or as little as you need, and as determined
by fatigue.
francis (Feb 13, 2007 2:51:28 PM)
thx
ChatMaster (Feb 13, 2007 2:52:17 PM)
I have another question that we pre-submitted if we are done with Francis' and
l-h's questions
ChatMaster (Feb 13, 2007 2:52:57 PM)
Here it is: "It is about a 2 hour drive to the nearest MDA Clinic. Although
I have heard that there is a good team at the clinic, getting there is difficult
for me and my family. Is it really worth my time to drive so far to get to a
clinic? My community doctor has been very nice and seems willing to learn as
much as he can about ALS."
avery (Feb 13, 2007 2:57:36 PM)
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ChatMaster (Feb 13, 2007 2:57:48 PM)
welcome avery!
ChatMaster (Feb 13, 2007 2:58:17 PM)
We are going to hold this chat on a 'first asked, first answered' basis. Please
type the following "ChatMaster, I have a question" and I will add
you to the list of chat names and call on people to ask their questions one
at time. If you would like to ask a question please tell me.
dr-appel (Feb 13, 2007 2:58:39 PM)
Most of the patients that come to our MDA/ALS clinic in Houston travel more
than 2 hours to get to us. They tell us that the major reason they come is for
the experience and wisdom of the 20 experienced professionals, such as neurologists,
respiratory therapists, pulmonologists, dieticians, physical therapists, occupational
therapists, MDA counselors, and social workers present at the clinic. We are
all upbeat, and can provide the hope that is critical for the ALS patient. It
is just not possible for your community MD to assemble a team experienced in
ALS care to see you. However, it is equally important for you to be followed
by your community MD to treat every day problems that need to be handled, such
as infections, etc.
avery (Feb 13, 2007 2:58:41 PM)
I have IBM and I am curious if you have any new info or experimental trials
for IBM?
dr-cwik (Feb 13, 2007 2:58:57 PM)
2 hour car rides can be tiring for most people and exhausting for individuals
with ALS. However, for a rare disease like ALS, you want a team that is very
knowledgeable about the disease and can anticipate problems and address them
early on. This is so important as ALS is steadily progressive and always changing.
Anticipating the need for interventions, for example a power wheelchair, can
eliminate delays in obtaining care or equipment. To try and keep the number
of long car rides to a minimum, your MDA team can work with your community doctor
to make certain that your needs are met. The important issue is that you clinic
team and your community doctor have good lines of communication.
avery (Feb 13, 2007 3:00:17 PM)
Do you have many IBM patients in Houston?
ChatMaster (Feb 13, 2007 3:00:38 PM)
avery, I can ask our Health Care Services team this question about IBM. This
chat is specifically to address ALS clinical issues. We would be happy to answer
your IBM question offline. please email mda@mdausa.org
dr-appel (Feb 13, 2007 3:01:14 PM)
Yes, I do see a large number of patients with IBm, and do our best to deal with
their disorder.
avery (Feb 13, 2007 3:01:32 PM)
Ok Sorry about that. I am getting desperate? I will send an email. THanks.
ChatMaster (Feb 13, 2007 3:01:58 PM)
Thanks, avery. I will forward it to our Health Care Services team asap!
ChatMaster (Feb 13, 2007 3:02:30 PM)
Any more questions or comments?
ChatMaster (Feb 13, 2007 3:02:51 PM)
The ALS Clinical Care Experts Chat is now coming to an end
avery (Feb 13, 2007 3:03:06 PM)
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Annie (Feb 13, 2007 3:03:24 PM)
Thank you Dr. Cwik & Dr. Appel.
l-h (Feb 13, 2007 3:03:29 PM)
Thanks for your help.
ChatMaster (Feb 13, 2007 3:03:36 PM)
Yes, thank you Dr. Cwik and Dr. Appel
dr-appel (Feb 13, 2007 3:03:53 PM)
Glad to have been of help !!
ChatMaster (Feb 13, 2007 3:03:57 PM)
We look forward to having you again at an Experts chat
dr-cwik (Feb 13, 2007 3:04:07 PM)
Bye, now.
dr-cwik (Feb 13, 2007 3:04:12 PM)
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francis (Feb 13, 2007 3:04:12 PM)
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Annie (Feb 13, 2007 3:04:18 PM)
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ChatMaster (Feb 13, 2007 3:04:20 PM)
Bye all
dr-appel (Feb 13, 2007 3:04:21 PM)
I'm also signing off.
l-h (Feb 13, 2007 3:04:24 PM)
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dr-appel (Feb 13, 2007 3:04:30 PM)
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ChatMaster (Feb 13, 2007 3:04:33 PM)
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