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Episode Transcript
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Speaker 1 (00:00):
Lock host Radio.
Speaker 2 (00:40):
Hello everyone, and welcome to New Heights Educational Group talk
show on education. My name is Kayden Bhan, your host
and a volunteer for New Heights Educational Group. Here with
me is founder and director of Pamela Clark.
Speaker 3 (00:53):
Hello, Pamela, Hello, how are you tonight?
Speaker 2 (00:56):
I am very well, thank you, How are you great?
Speaker 4 (01:00):
Thank you?
Speaker 1 (01:01):
And before we.
Speaker 2 (01:01):
Get into our topic today on ALS and CLIX disease,
I would just like to thank our many listeners that
we've had over the course of our beginning of our
radio show. We've had about twelve to thirteen averaged a week,
and we just like to take this time to appreciate
our listeners, and we definitely really do appreciate you listening
(01:22):
and those who have called in and everything. So thank you,
and let us move on to our topic today. So
first we're going to start talking about ALS, which is
a myotropic lateral sclerosis. This is a terminal disease, a
very very catastrophic disease that affects many people. ALS is
(01:47):
also known as Lugaric's disease, and it's so rapidly progressive
and fatal, As I said, neurological disease that attacks the
nerve cells responsible for controlling voluntary muscles. This disease belongs
to a group of disorders known as motor neuron diseases,
which are characterized by the gradual degeneration and death of
(02:08):
motor neurons. Motor Neurons are the nerve cells located in
the brain, brain stem, and spinal cord that serve as
controlling units and vital communication links between the nervous system
and the voluntary muscles of the body. Messages from motor
neurons in the brain called upper motor neurons, are transmitted
to motor neurons in the spinal cord called lower motor neurons,
(02:29):
and from them to particular muscles. In ALS, most the
upper motor neurons and the lower motor neurons degenerate or die,
ceasing to send messages to the muscles. Unable to function,
the muscles gradually weaken and waste away. This is known
as atrophy, and they also can twitch. Eventually, the ability
(02:51):
of the brain to start and control voluntary movement is lost,
so essentially, those suffering from the disease become paralyzed. ALS
also causes weakness with the wide rains of disabilities. Eventually,
all muscles under voluntary control are effected, and patients leaves
their strength and the ability to move their arms, legs,
(03:11):
and body. When muscles in the diaphragm and chest well fail,
patience leades the ability to breathe without ventillary support. Most
people with ALS die from respiratory failure, usually within five
to three to five years from the onset of symptoms. However,
about ten percent of ALS patients can survive for ten
(03:32):
or more years. Although this disease usually does not impair
a person's mind or intelligence, several recent studies suggest that
some ALS patients may have alterations in cognitive function, such
as depression and problems with decision making and memory. ALS
does not affect a person's ability to see, smell, taste, here,
(03:54):
or recognize touch. Patients usually maintain control of eye, muscles,
and bladder in balf functions, although in the late stages
of disease, most patients will need help getting to and
from the bathroom. So as you can tell, this disease
is very debilitating and quite terrible, as one eventually loses
their ability to function on their own and become paralyzed
(04:18):
but able to experience site sound, taste and everything like that.
So essentially you're living in the prison of your body.
It's a terrible disease. And now, Pamela, it's going to
tell you about who can get ALS.
Speaker 3 (04:31):
Yes, and I can see why there would be depression issues,
which can also be very dangerous. I mean, anyways, Tom
who gets ALS? As many thousands of twenty thousand American
excuse me, have ALS, and it estimated five thousand people
in the United States diagnosed with the disease. ALS is
(04:57):
one of the most common neuro muscular des thees worldwide,
and people of all races and ethnic backgrounds are affected.
ALS most commonly strikes people between the ages of forty
and sixty years of age, but younger and older people
also can develop the disease. Men are affected more often
(05:18):
than women, in ninety to ninety five percent of all
ALS cases. The disease occurs apparently at random, with no
clearly associated risk factors. Patients do not have a family
history of the disease, and their family members are not
considered to be at an increased risk for developing ALS.
(05:40):
About five to ten percent of all ALS cases are inherited.
The familial The familiar form of ALS usually results from
a pattern of inheritance that requires only one parent to
carry one gene responsible for the disease. About twenty percent
(06:00):
of all familiar cases result from a specific genetic defect
that leads to mutation of the enzyme known as the
superoxide dis mutist. I might be saying that one research
or well the mutis one or in for me, it
has the parentheses of sood one. Research on this mutation
(06:24):
is provided clues about the possible causes of motor neuron
death in ALS. Not all familiar ALF cases are due
to this the sood one mutation. Therefore, other unidentified genetic
causes clearly exist. And Katiene, you want to talk about
some symptoms, correct.
Speaker 2 (06:44):
Just to some of the symptoms of LS. We talked
a little bit about what happens in the beginning in
our introduction, but the onsets of LS may also be
so subtle that symptoms are frequently overlooked. The earliest symptoms
may include twitching, cramping or stiffness of the muscles, muscle
weakness affecting an arm or leg, slurred and nasily speech,
(07:09):
or difficulty chewing and swalling. These general complaints then develop
into more obvious weakness or etch feed that may cause
a physician to suspect ALS. The parts of the body
affected by early symptoms of ALS depend on which muscles
in the body are damaged first. In some cases, sentence
(07:29):
initially affect one of the legs, and patients experience awkwardness
when running or walking, or they notice that they are
tripping or stumbling. More often, some patients first see the
effects of the disease on a hand or arm, as
they experience difficulty with simple task requiring manual dexterity, such
(07:51):
as buttoning a shirt, writing, or turning a key. Other
patients notice speech problems. Regardless of the part of the
body that is first affected by the disease, Muscle weakness
and atrophies spread to other parts of the body as
the disease progresses. Patients have increasing problems with moving, swallowing, dysphasia,
(08:12):
and speaking or forming worves, which is known as dysarthia.
Symptoms of upper motor neuron involvement include tight and stiff muscles,
which is called specticity, and exaggerated reflexes hyperflexia, including an
overactive gag reflex, an abnormal reflex commonly called Babinski sign,
(08:34):
where the large to ex ends upward as the soul
of the foot is stimulated in a certain way, also
can indicate motor neuron damage. Other symptoms can include lower
motor neuron degeneration, which also leads to muscle weakness and atrophy,
muscle cramps, and sleeting twitches of muscles that can be
(08:57):
seen under the skin. In order to be diagnosed with ALS,
patients must have signs and symptoms of both upper and
lower motor neuron damage that cannot be attributed to other cases.
Although the sequence of emerging systems and the rate of
the disease progression vary from person to person, eventually patients
(09:18):
will not be able to stand or walk, get out
of bed on their own, or use their hands and arms.
Difficulty swallowing and chewing impair the patient's ability to eat
normally and can increase the risk of choking and aspiration.
Maintaining weight will become a problem because the Because the
disease does not usually affect cognitive abilities. As I mentioned before,
(09:39):
patients are aware of their progressive loss of function and
may become anxious and depressed. A small percentage of patients
may experience problem with memory or decision making. As I
also mentioned before, and there is a growing evidence that
some may develop a form of dementia. Healthcare professionals need
to explain the course of the disease and describe available
(10:01):
treatment options so patients can make informed decisions in advance.
In later stages of the disease, patients have difficulty breathing
as the muscles of the respiratory system are weakened and
eventually become paralyzed. Patients will eventually lose the ability to
breathe on their own and have to maintain mentally support
for survival. Patients can also, because of this, have an
(10:25):
increased risk of pneumonia during the later stages of als. Wow,
it's very, very catastrophic disease, and unfortunately there's not much
known on the disease except for how to diagnose it,
and unfortunately wants to diagnose. There's really nothing to do
(10:47):
except for weight and this is a huge problem for
patients because you definitely can relate to how patients become
anxious and depressed seeing their own body kind of deteriorate
and eventually becoming trapped within their paralyzed body having to
(11:08):
be Maybe they might feel like a nuisance to their children,
or that they can see the effect on their children,
and so it's very important, you know, to care for
the person's mentality and not only their body. And I
think a lot of times when we deal with patients
that are paralyzed, you can often forget that they have
(11:32):
the ability to hear and to see, and so it
is important to maintain a relationship with that patient or
with that family member or with that friend and have conversations,
tell stories, spend time with because they're still there even
though they can't move. And I know that Pamila has
joined many support groups considering that support als and research
(11:58):
and education on ali US, and I hope that we
were able to have some listeners tonight or some callers
that would love to share their experience or if there
you know healthcare providers, how the system deals with paitians
of the als, what experience they've had in session, Jeff,
(12:20):
you we really love input from families and friends who
have suffered having somebody in their lives have this disease.
Speaker 3 (12:29):
Yeah, please call in if you want to talk about this.
If you haven't found a support group, so I personally
don't have it. I've known some people that do, and
and that was the purpose for our show is well,
when you know, I've helped families for a long time,
and boy, I've talked to so many families with different issues,
(12:54):
you know, from add to ADHD, autism to multiple sclerosis
and lugary, all sorts of things cancer, and it goes
on and on, and our purposes. We're not doctors, we're
not professionals on all of these subjects, but we do
(13:16):
believe in giving a way for people to.
Speaker 4 (13:20):
Talk about things and to relate and providing information, you know,
to help provide support to these families that maybe aren't
getting support or haven't even.
Speaker 3 (13:31):
Started looking for support. I just did a brief search
on Facebook and found many groups for ALS and many resources.
And I would really stress anyone that has that disease
or any to just run regular searches online, if not
(13:52):
on Facebook, you know, even just doing a search engine
for resources. One I found online the ALS Therapy Alliance
for lou Grigg's Disease. There's you know, seven five hundred
and sixty six people that take part and just that
one site alone, and there was another one I had
(14:15):
found also, Let's see if I can get that address
it's the second.
Speaker 4 (14:30):
Well, let's see that was.
Speaker 3 (14:34):
But there's regular groups like open groups, but people just
discuss things. And then there's Price for Life, which is
the number four, and that's for research and that has
twelve thousand people that belong to that. The open groups
they only have like seventy one members. There's one with
(14:54):
twenty six members, but there's still there. Those are resources
that you may want to look into. A few others
that I have found over the years that are listed
on our website. Let me get to that. Here, there's
Human Brain and Spinal Fluid Resource Center Neurology Research and
(15:18):
that you can visit their site at www dot l O,
n I, dot U, c l A dot ed U,
and that's in Los Angeles, California. And then there's another
site that it's Brain Resources and Information Network and it's
called brain and their website is www dot als dot net.
(15:45):
And I guess those are the main sites that I
have come across just you know, just looking into it
a little bit. I'm talking five ten minute research. So
there's so many things, so many resources is out there,
and so many support groups of people want to talk
about it and to talk about it. Could also help
(16:08):
with research could lead to other realizations and things that
people don't know about. The more people talking about a subject,
the better off the people that are suffering from the
disease you know benefits from.
Speaker 2 (16:24):
So and that's what we also start to do. Oswell's
provide resources in educating people on diseases such as ALS
and the other disease and the other conditions we've talked about,
such as add and bipolar disorder. And since we don't
have any colors at the moment, we can talk a
little bit about how ALS is diagnosed in case anyone
(16:47):
is curious as to what tests they use to diagnose it.
Since doctors and researchers aren't really sure as to the
causes other than that there's mutation in the dismutation gene,
so no one as can be assumed, no one test
can provide a definitive diagnosis of ALS, although, as I
(17:09):
mentioned before, if a person has the presence of upper
and lower motor neuron signs that are debilitated in a
single limb or throughout their body can strongly suggest that
they have ALS. Instead, the diagnosis of ALS is primarily
based on the symptoms and signs the physician observes in
(17:30):
the patient and a series of tests to rule out
other diseases. Physicians obtain the patient's full medical history and
usually conduct neurologic examination at regular interval to assess whether
symptoms such as muscle weakness, atrophy of the muscles, hyperflexia,
and soacicity are getting pressfully worse, because that will definitely
(17:53):
tell them if the disease is there and if it's progressing.
Because the symptoms ALS can also be similar to a
wide variety of other, more treatable diseases or disorders, appropriate
tests must be conducted to exclude the possibility of other conditions.
So basically, in order to diagnose this it's a guess
(18:14):
in check method, they have to exclude all of the possibilities.
One of these tests used to do this is electromyography,
an EMG and special recording technique that detects the electrical
activity in the muscles. Certain emg's findings can support the
diagnosis the diagnosis of ALS. Another common test measures nerve
(18:37):
condition velocity. Specific abnormalities in this test may suggest, for example,
that the patient has a form of perpheral neuropathy damaged
to peripheral nerves or myopathy muscle disease can be dediagnosis
rather than ALS. The physician may also order magnetic resonance imaging,
(19:01):
a non invasive procedure that uses a magnetic field and
radio waves to take detailed images of the brain and
spinal cords. Although these MRI scans are often normal in
patients with ALS, they can reveal an evidence of other
problems that may be causing the symptoms, such as the
spinal cord tumor or her needed disc or cervical spondylosis.
(19:24):
Based on the patient's symptoms and findings from the examinations
and from these tests, the position may order more tests
on blood and your in samples to eliminate the possibility
of other diseases, as well as the physician may order
other routine laboratory tests. In some cases, if the physician
(19:45):
suspects that the patient may have myopathy rather than ALS,
a muscle biopsy may be preferred, and this is where
they take a sample of the muscles the affected muscle
and they look at it under a microscope of its
disease tissue. Infectious diseases such as human immuno deficiency virus
(20:05):
HIV and human T cell leukemia virus and lime disease
can in some cases cause ALS like symptoms. Neurological disorders
such as multiple sclerosis, post polio syndrome, and multifocal motor
neuropathy and spinal muscular atrophy. Alstole can mimic certain facets
(20:28):
of the disease and should be considered by the physician
attempting to make the diagnosis. Because of the prognosis carried
by the diagnoses of ALS and the variety of diseases
and disorders that can resemble ALS. In the early stage
of disease, patients may wish to obtain a second neurological opinion. So,
as I said before, diagnosing disease is a lengthy process
(20:51):
since they can't determine exactly what causes the mutation in
a decmutase gene, so they can't detect for it with
just one test. So basically, as you can see from
the information, they have to rule out every other possibility
because they definitely don't want to give a person a
diagnosis that is terminal if there are other diseases that
(21:15):
the person is suffering from that they can treat.
Speaker 3 (21:18):
Yeah, and a lot for myself and others, because I
have some health issues, but that you know, there's so
many diseases that you know, parts of diseases are like
other diseases and can be very complicated.
Speaker 2 (21:40):
Especially for the diseases that aren't you know as well researched.
Oh why we want to raise awareness for diseases such
as this, to get those thoughts out there, to evoke research,
provoke support for those who are suffering from this disease,
to hopefully find a way of treating this disease more effectively.
(22:02):
Right now, I know from my school, we'd had to
do a study on therapy for hostage patients are terminally
ill patients, and what seemed to be the best treatment
of patients who unfortunately don't have a chance of surviving
their disease is to make the process much more comfortable.
(22:28):
And we found that those who did this with speech therapy,
specifically for ALS. The speech therapy would include having a
board of letters, and because ALS patients can see and hear,
the person would have a conversation with this patient by
(22:48):
asking the patient to blink their eye when when she
picked a letter that she wanted to say, so you
were able to have conversations with the patient and make
them feel more like themselves by having those interactions with
other people. And I think that's the most important thing
(23:08):
when dealing with someone who's suffering from eternal disease, is
to make them feel as loved and as comfortable as possible,
you know, as also anytime to our listeners, you can
call any time you want and discuss any of these,
you know, subjects that we're talking about. But we're just
going to move it over in our last bit of
(23:30):
the sect of our radio show today to Celiac's disease.
And so we should mention.
Speaker 3 (23:37):
Too that we discussed Sally ect Di Sason on February
night and February twenty third, and those shows are both
on our home page of our website at New Heights
Education dot org. So if anybody wants to go back
and listen to those shows, they can definitely do that.
But we did want to touch on it again because
(23:58):
a lot of the people that I know in this
area that are homeschoolers or not. I mean, it doesn't
have anything to do with them being homescholars, but a
lot of the people that are homeschoolers that I know
have the silly act gluten sensitivity, and of course like
I said, that's not just homeschool, you know, it's just
(24:20):
the people I know that suffer from this. So I
did want to touch on it again just in case
somebody else wanted to discuss it and call in, and so, yeah.
Speaker 2 (24:32):
Okay, So just give a brief overview of what it is.
And as we said before, we talked about it from
one of our previous shows that you can access on
our website. Cilia's disease basically is a severe allergic reaction
to gluten and gluten and it's also gluten intolerance. Gluten
(24:55):
is basically a product of wheat, so it can be
found in all carbohydrate foods that are specifically made by
the wheat grain. I was also found in other grains,
but the easiest to spot and just stay away from
it is the wheat, and that's all your breads, your cakes,
(25:15):
your pasta, and things like that you would have to
avoid if you had this sensitivity. Uh. The causes for
theolic disease is not really known, but it can be
found by testing how while your body is absorbing nutrients.
In my case, I had a little bit of a
(25:37):
reaction to gluten for some time, and we were able
to discover this by finding out the reason why my
vitamin D levels were so low, and we found that
even with supplements they remained low. So we concluded, and
much in the sense through als that you conclude by
guess and check and elimination, that I had a gluten
(26:01):
intolerance to some degree. And so what it causes is
that it can cause cramping, kind of feels like you
ate something spoiled. You'll get really really bad cramps, you
might feel nauseous, you might have difficulty going to the bathroom,
(26:21):
and it's just it's a very very uncomfortable feeling. It
can inflame your intestines, and it just it's just it's
a very very awful to experience. It's kind of like
having severe, severe contractions is the only thing that I
could think of to compare it to. And it also
(26:42):
for those who had the actual disease, which is the
more serious form of gluten intolerance, it can lead to
Crone's disease, which is a disease of the intestine. If
you contind if one who diagnoses that thelia disease continues
to eat gluten and upset their intestines, and it can
also we can the ability of the intestines to absorb nutrients,
(27:06):
which can cause growth delay in children. Children have it
can cause depression or anxiety, bruising easily, fatigue, mis mentionable periods,
alter muckle, cramps as I said, and pain and those leaves.
So for those who are intensely suffering from this glute
and allergen, it can be very very serious. Then you
(27:29):
definitely want to make sure that if you're experiencing, if
you notice that when you have maybe a bold pasta,
you get a little crampy leader or you feel uncomfortable,
even if you think it's silly, definitely go visit your doctor.
You know, we're not doctors are not suggesting that you
should be diagnosed with to you elexities, but it is
an important to ask your doctor. There's a very non
(27:51):
adasood test for me. Like I said, it is basically
just a routine blood test, and she was able. My
doctor is able to check to see why my levels
for certain vitamins are so low, and then I found
out that I was a little bit sensitive to glutenants.
So definitely, in your experience symptoms, if your children are
(28:11):
experience these symptoms, it's more important to go talk to
your doctor, because you definitely don't want to stunt your
child's growth in case they have this disease or limit
the amount of nutrients that their body can absorb during
the precious time that they're becoming adolescent.
Speaker 3 (28:30):
Right, and they can suffer from other things too, like
filiac disease can lead into other things, or they can
have other things along with it, like the auto immune disorders,
or some people with Down syndrome have it. Intestinal cancer,
which you don't want to scare anybody, but that is
(28:52):
sometimes related intestinal lymphonamphone lymphoma, lactose and tolerance, thyroid disease,
type one diabetes. Those can all be related or have
something to do with it in one way or another.
(29:15):
Or interesting too though, is thyroid problems in general can
cause a wide variety of issues. So you know, people
that are having any kind of medical problem should have
their thyroid checked. And I don't know how common that is,
but you know it should be looked at.
Speaker 2 (29:36):
Yeah, So basically, you know you're experiencing problems in your diet,
just add CELIAX or gluten intimes. Not to jump to
the worst worst of possibility, but it's good to be
aware and to be educated on becusing you know the problems,
and so definitely ask your doctor if you feel like
you're having these sensitivity issues and see a professional and
(29:59):
see if you can get help.
Speaker 3 (30:03):
Yep. Well, thank you all for joining us tonight.
Speaker 2 (30:07):
A problem and thank you Pamela. We'll see you next week.
Speaker 3 (30:11):
Yep for our reading tips and difficulties.
Speaker 2 (30:15):
Mm hmm. Have good night everyone, Bye bye.
Speaker 5 (30:33):
When I am done, unto my soul so weary, when
troubles come and my heart burden be, then I am seen.
(30:54):
Lady s
Lock host Radio.
Speaker 2 (00:40):
Hello everyone, and welcome to New Heights Educational Group talk
show on education. My name is Kayden Bhan, your host
and a volunteer for New Heights Educational Group. Here with
me is founder and director of Pamela Clark.
Speaker 3 (00:53):
Hello, Pamela, Hello, how are you tonight?
Speaker 2 (00:56):
I am very well, thank you, How are you great?
Speaker 4 (01:00):
Thank you?
Speaker 1 (01:01):
And before we.
Speaker 2 (01:01):
Get into our topic today on ALS and CLIX disease,
I would just like to thank our many listeners that
we've had over the course of our beginning of our
radio show. We've had about twelve to thirteen averaged a week,
and we just like to take this time to appreciate
our listeners, and we definitely really do appreciate you listening
(01:22):
and those who have called in and everything. So thank you,
and let us move on to our topic today. So
first we're going to start talking about ALS, which is
a myotropic lateral sclerosis. This is a terminal disease, a
very very catastrophic disease that affects many people. ALS is
(01:47):
also known as Lugaric's disease, and it's so rapidly progressive
and fatal, As I said, neurological disease that attacks the
nerve cells responsible for controlling voluntary muscles. This disease belongs
to a group of disorders known as motor neuron diseases,
which are characterized by the gradual degeneration and death of
(02:08):
motor neurons. Motor Neurons are the nerve cells located in
the brain, brain stem, and spinal cord that serve as
controlling units and vital communication links between the nervous system
and the voluntary muscles of the body. Messages from motor
neurons in the brain called upper motor neurons, are transmitted
to motor neurons in the spinal cord called lower motor neurons,
(02:29):
and from them to particular muscles. In ALS, most the
upper motor neurons and the lower motor neurons degenerate or die,
ceasing to send messages to the muscles. Unable to function,
the muscles gradually weaken and waste away. This is known
as atrophy, and they also can twitch. Eventually, the ability
(02:51):
of the brain to start and control voluntary movement is lost,
so essentially, those suffering from the disease become paralyzed. ALS
also causes weakness with the wide rains of disabilities. Eventually,
all muscles under voluntary control are effected, and patients leaves
their strength and the ability to move their arms, legs,
(03:11):
and body. When muscles in the diaphragm and chest well fail,
patience leades the ability to breathe without ventillary support. Most
people with ALS die from respiratory failure, usually within five
to three to five years from the onset of symptoms. However,
about ten percent of ALS patients can survive for ten
(03:32):
or more years. Although this disease usually does not impair
a person's mind or intelligence, several recent studies suggest that
some ALS patients may have alterations in cognitive function, such
as depression and problems with decision making and memory. ALS
does not affect a person's ability to see, smell, taste, here,
(03:54):
or recognize touch. Patients usually maintain control of eye, muscles,
and bladder in balf functions, although in the late stages
of disease, most patients will need help getting to and
from the bathroom. So as you can tell, this disease
is very debilitating and quite terrible, as one eventually loses
their ability to function on their own and become paralyzed
(04:18):
but able to experience site sound, taste and everything like that.
So essentially you're living in the prison of your body.
It's a terrible disease. And now, Pamela, it's going to
tell you about who can get ALS.
Speaker 3 (04:31):
Yes, and I can see why there would be depression issues,
which can also be very dangerous. I mean, anyways, Tom
who gets ALS? As many thousands of twenty thousand American
excuse me, have ALS, and it estimated five thousand people
in the United States diagnosed with the disease. ALS is
(04:57):
one of the most common neuro muscular des thees worldwide,
and people of all races and ethnic backgrounds are affected.
ALS most commonly strikes people between the ages of forty
and sixty years of age, but younger and older people
also can develop the disease. Men are affected more often
(05:18):
than women, in ninety to ninety five percent of all
ALS cases. The disease occurs apparently at random, with no
clearly associated risk factors. Patients do not have a family
history of the disease, and their family members are not
considered to be at an increased risk for developing ALS.
(05:40):
About five to ten percent of all ALS cases are inherited.
The familial The familiar form of ALS usually results from
a pattern of inheritance that requires only one parent to
carry one gene responsible for the disease. About twenty percent
(06:00):
of all familiar cases result from a specific genetic defect
that leads to mutation of the enzyme known as the
superoxide dis mutist. I might be saying that one research
or well the mutis one or in for me, it
has the parentheses of sood one. Research on this mutation
(06:24):
is provided clues about the possible causes of motor neuron
death in ALS. Not all familiar ALF cases are due
to this the sood one mutation. Therefore, other unidentified genetic
causes clearly exist. And Katiene, you want to talk about
some symptoms, correct.
Speaker 2 (06:44):
Just to some of the symptoms of LS. We talked
a little bit about what happens in the beginning in
our introduction, but the onsets of LS may also be
so subtle that symptoms are frequently overlooked. The earliest symptoms
may include twitching, cramping or stiffness of the muscles, muscle
weakness affecting an arm or leg, slurred and nasily speech,
(07:09):
or difficulty chewing and swalling. These general complaints then develop
into more obvious weakness or etch feed that may cause
a physician to suspect ALS. The parts of the body
affected by early symptoms of ALS depend on which muscles
in the body are damaged first. In some cases, sentence
(07:29):
initially affect one of the legs, and patients experience awkwardness
when running or walking, or they notice that they are
tripping or stumbling. More often, some patients first see the
effects of the disease on a hand or arm, as
they experience difficulty with simple task requiring manual dexterity, such
(07:51):
as buttoning a shirt, writing, or turning a key. Other
patients notice speech problems. Regardless of the part of the
body that is first affected by the disease, Muscle weakness
and atrophies spread to other parts of the body as
the disease progresses. Patients have increasing problems with moving, swallowing, dysphasia,
(08:12):
and speaking or forming worves, which is known as dysarthia.
Symptoms of upper motor neuron involvement include tight and stiff muscles,
which is called specticity, and exaggerated reflexes hyperflexia, including an
overactive gag reflex, an abnormal reflex commonly called Babinski sign,
(08:34):
where the large to ex ends upward as the soul
of the foot is stimulated in a certain way, also
can indicate motor neuron damage. Other symptoms can include lower
motor neuron degeneration, which also leads to muscle weakness and atrophy,
muscle cramps, and sleeting twitches of muscles that can be
(08:57):
seen under the skin. In order to be diagnosed with ALS,
patients must have signs and symptoms of both upper and
lower motor neuron damage that cannot be attributed to other cases.
Although the sequence of emerging systems and the rate of
the disease progression vary from person to person, eventually patients
(09:18):
will not be able to stand or walk, get out
of bed on their own, or use their hands and arms.
Difficulty swallowing and chewing impair the patient's ability to eat
normally and can increase the risk of choking and aspiration.
Maintaining weight will become a problem because the Because the
disease does not usually affect cognitive abilities. As I mentioned before,
(09:39):
patients are aware of their progressive loss of function and
may become anxious and depressed. A small percentage of patients
may experience problem with memory or decision making. As I
also mentioned before, and there is a growing evidence that
some may develop a form of dementia. Healthcare professionals need
to explain the course of the disease and describe available
(10:01):
treatment options so patients can make informed decisions in advance.
In later stages of the disease, patients have difficulty breathing
as the muscles of the respiratory system are weakened and
eventually become paralyzed. Patients will eventually lose the ability to
breathe on their own and have to maintain mentally support
for survival. Patients can also, because of this, have an
(10:25):
increased risk of pneumonia during the later stages of als. Wow,
it's very, very catastrophic disease, and unfortunately there's not much
known on the disease except for how to diagnose it,
and unfortunately wants to diagnose. There's really nothing to do
(10:47):
except for weight and this is a huge problem for
patients because you definitely can relate to how patients become
anxious and depressed seeing their own body kind of deteriorate
and eventually becoming trapped within their paralyzed body having to
(11:08):
be Maybe they might feel like a nuisance to their children,
or that they can see the effect on their children,
and so it's very important, you know, to care for
the person's mentality and not only their body. And I
think a lot of times when we deal with patients
that are paralyzed, you can often forget that they have
(11:32):
the ability to hear and to see, and so it
is important to maintain a relationship with that patient or
with that family member or with that friend and have conversations,
tell stories, spend time with because they're still there even
though they can't move. And I know that Pamila has
joined many support groups considering that support als and research
(11:58):
and education on ali US, and I hope that we
were able to have some listeners tonight or some callers
that would love to share their experience or if there
you know healthcare providers, how the system deals with paitians
of the als, what experience they've had in session, Jeff,
(12:20):
you we really love input from families and friends who
have suffered having somebody in their lives have this disease.
Speaker 3 (12:29):
Yeah, please call in if you want to talk about this.
If you haven't found a support group, so I personally
don't have it. I've known some people that do, and
and that was the purpose for our show is well,
when you know, I've helped families for a long time,
and boy, I've talked to so many families with different issues,
(12:54):
you know, from add to ADHD, autism to multiple sclerosis
and lugary, all sorts of things cancer, and it goes
on and on, and our purposes. We're not doctors, we're
not professionals on all of these subjects, but we do
(13:16):
believe in giving a way for people to.
Speaker 4 (13:20):
Talk about things and to relate and providing information, you know,
to help provide support to these families that maybe aren't
getting support or haven't even.
Speaker 3 (13:31):
Started looking for support. I just did a brief search
on Facebook and found many groups for ALS and many resources.
And I would really stress anyone that has that disease
or any to just run regular searches online, if not
(13:52):
on Facebook, you know, even just doing a search engine
for resources. One I found online the ALS Therapy Alliance
for lou Grigg's Disease. There's you know, seven five hundred
and sixty six people that take part and just that
one site alone, and there was another one I had
(14:15):
found also, Let's see if I can get that address
it's the second.
Speaker 4 (14:30):
Well, let's see that was.
Speaker 3 (14:34):
But there's regular groups like open groups, but people just
discuss things. And then there's Price for Life, which is
the number four, and that's for research and that has
twelve thousand people that belong to that. The open groups
they only have like seventy one members. There's one with
(14:54):
twenty six members, but there's still there. Those are resources
that you may want to look into. A few others
that I have found over the years that are listed
on our website. Let me get to that. Here, there's
Human Brain and Spinal Fluid Resource Center Neurology Research and
(15:18):
that you can visit their site at www dot l O,
n I, dot U, c l A dot ed U,
and that's in Los Angeles, California. And then there's another
site that it's Brain Resources and Information Network and it's
called brain and their website is www dot als dot net.
(15:45):
And I guess those are the main sites that I
have come across just you know, just looking into it
a little bit. I'm talking five ten minute research. So
there's so many things, so many resources is out there,
and so many support groups of people want to talk
about it and to talk about it. Could also help
(16:08):
with research could lead to other realizations and things that
people don't know about. The more people talking about a subject,
the better off the people that are suffering from the
disease you know benefits from.
Speaker 2 (16:24):
So and that's what we also start to do. Oswell's
provide resources in educating people on diseases such as ALS
and the other disease and the other conditions we've talked about,
such as add and bipolar disorder. And since we don't
have any colors at the moment, we can talk a
little bit about how ALS is diagnosed in case anyone
(16:47):
is curious as to what tests they use to diagnose it.
Since doctors and researchers aren't really sure as to the
causes other than that there's mutation in the dismutation gene,
so no one as can be assumed, no one test
can provide a definitive diagnosis of ALS, although, as I
(17:09):
mentioned before, if a person has the presence of upper
and lower motor neuron signs that are debilitated in a
single limb or throughout their body can strongly suggest that
they have ALS. Instead, the diagnosis of ALS is primarily
based on the symptoms and signs the physician observes in
(17:30):
the patient and a series of tests to rule out
other diseases. Physicians obtain the patient's full medical history and
usually conduct neurologic examination at regular interval to assess whether
symptoms such as muscle weakness, atrophy of the muscles, hyperflexia,
and soacicity are getting pressfully worse, because that will definitely
(17:53):
tell them if the disease is there and if it's progressing.
Because the symptoms ALS can also be similar to a
wide variety of other, more treatable diseases or disorders, appropriate
tests must be conducted to exclude the possibility of other conditions.
So basically, in order to diagnose this it's a guess
(18:14):
in check method, they have to exclude all of the possibilities.
One of these tests used to do this is electromyography,
an EMG and special recording technique that detects the electrical
activity in the muscles. Certain emg's findings can support the
diagnosis the diagnosis of ALS. Another common test measures nerve
(18:37):
condition velocity. Specific abnormalities in this test may suggest, for example,
that the patient has a form of perpheral neuropathy damaged
to peripheral nerves or myopathy muscle disease can be dediagnosis
rather than ALS. The physician may also order magnetic resonance imaging,
(19:01):
a non invasive procedure that uses a magnetic field and
radio waves to take detailed images of the brain and
spinal cords. Although these MRI scans are often normal in
patients with ALS, they can reveal an evidence of other
problems that may be causing the symptoms, such as the
spinal cord tumor or her needed disc or cervical spondylosis.
(19:24):
Based on the patient's symptoms and findings from the examinations
and from these tests, the position may order more tests
on blood and your in samples to eliminate the possibility
of other diseases, as well as the physician may order
other routine laboratory tests. In some cases, if the physician
(19:45):
suspects that the patient may have myopathy rather than ALS,
a muscle biopsy may be preferred, and this is where
they take a sample of the muscles the affected muscle
and they look at it under a microscope of its
disease tissue. Infectious diseases such as human immuno deficiency virus
(20:05):
HIV and human T cell leukemia virus and lime disease
can in some cases cause ALS like symptoms. Neurological disorders
such as multiple sclerosis, post polio syndrome, and multifocal motor
neuropathy and spinal muscular atrophy. Alstole can mimic certain facets
(20:28):
of the disease and should be considered by the physician
attempting to make the diagnosis. Because of the prognosis carried
by the diagnoses of ALS and the variety of diseases
and disorders that can resemble ALS. In the early stage
of disease, patients may wish to obtain a second neurological opinion. So,
as I said before, diagnosing disease is a lengthy process
(20:51):
since they can't determine exactly what causes the mutation in
a decmutase gene, so they can't detect for it with
just one test. So basically, as you can see from
the information, they have to rule out every other possibility
because they definitely don't want to give a person a
diagnosis that is terminal if there are other diseases that
(21:15):
the person is suffering from that they can treat.
Speaker 3 (21:18):
Yeah, and a lot for myself and others, because I
have some health issues, but that you know, there's so
many diseases that you know, parts of diseases are like
other diseases and can be very complicated.
Speaker 2 (21:40):
Especially for the diseases that aren't you know as well researched.
Oh why we want to raise awareness for diseases such
as this, to get those thoughts out there, to evoke research,
provoke support for those who are suffering from this disease,
to hopefully find a way of treating this disease more effectively.
(22:02):
Right now, I know from my school, we'd had to
do a study on therapy for hostage patients are terminally
ill patients, and what seemed to be the best treatment
of patients who unfortunately don't have a chance of surviving
their disease is to make the process much more comfortable.
(22:28):
And we found that those who did this with speech therapy,
specifically for ALS. The speech therapy would include having a
board of letters, and because ALS patients can see and hear,
the person would have a conversation with this patient by
(22:48):
asking the patient to blink their eye when when she
picked a letter that she wanted to say, so you
were able to have conversations with the patient and make
them feel more like themselves by having those interactions with
other people. And I think that's the most important thing
(23:08):
when dealing with someone who's suffering from eternal disease, is
to make them feel as loved and as comfortable as possible,
you know, as also anytime to our listeners, you can
call any time you want and discuss any of these,
you know, subjects that we're talking about. But we're just
going to move it over in our last bit of
(23:30):
the sect of our radio show today to Celiac's disease.
And so we should mention.
Speaker 3 (23:37):
Too that we discussed Sally ect Di Sason on February
night and February twenty third, and those shows are both
on our home page of our website at New Heights
Education dot org. So if anybody wants to go back
and listen to those shows, they can definitely do that.
But we did want to touch on it again because
(23:58):
a lot of the people that I know in this
area that are homeschoolers or not. I mean, it doesn't
have anything to do with them being homescholars, but a
lot of the people that are homeschoolers that I know
have the silly act gluten sensitivity, and of course like
I said, that's not just homeschool, you know, it's just
(24:20):
the people I know that suffer from this. So I
did want to touch on it again just in case
somebody else wanted to discuss it and call in, and so, yeah.
Speaker 2 (24:32):
Okay, So just give a brief overview of what it is.
And as we said before, we talked about it from
one of our previous shows that you can access on
our website. Cilia's disease basically is a severe allergic reaction
to gluten and gluten and it's also gluten intolerance. Gluten
(24:55):
is basically a product of wheat, so it can be
found in all carbohydrate foods that are specifically made by
the wheat grain. I was also found in other grains,
but the easiest to spot and just stay away from
it is the wheat, and that's all your breads, your cakes,
(25:15):
your pasta, and things like that you would have to
avoid if you had this sensitivity. Uh. The causes for
theolic disease is not really known, but it can be
found by testing how while your body is absorbing nutrients.
In my case, I had a little bit of a
(25:37):
reaction to gluten for some time, and we were able
to discover this by finding out the reason why my
vitamin D levels were so low, and we found that
even with supplements they remained low. So we concluded, and
much in the sense through als that you conclude by
guess and check and elimination, that I had a gluten
(26:01):
intolerance to some degree. And so what it causes is
that it can cause cramping, kind of feels like you
ate something spoiled. You'll get really really bad cramps, you
might feel nauseous, you might have difficulty going to the bathroom,
(26:21):
and it's just it's a very very uncomfortable feeling. It
can inflame your intestines, and it just it's just it's
a very very awful to experience. It's kind of like
having severe, severe contractions is the only thing that I
could think of to compare it to. And it also
(26:42):
for those who had the actual disease, which is the
more serious form of gluten intolerance, it can lead to
Crone's disease, which is a disease of the intestine. If
you contind if one who diagnoses that thelia disease continues
to eat gluten and upset their intestines, and it can
also we can the ability of the intestines to absorb nutrients,
(27:06):
which can cause growth delay in children. Children have it
can cause depression or anxiety, bruising easily, fatigue, mis mentionable periods,
alter muckle, cramps as I said, and pain and those leaves.
So for those who are intensely suffering from this glute
and allergen, it can be very very serious. Then you
(27:29):
definitely want to make sure that if you're experiencing, if
you notice that when you have maybe a bold pasta,
you get a little crampy leader or you feel uncomfortable,
even if you think it's silly, definitely go visit your doctor.
You know, we're not doctors are not suggesting that you
should be diagnosed with to you elexities, but it is
an important to ask your doctor. There's a very non
(27:51):
adasood test for me. Like I said, it is basically
just a routine blood test, and she was able. My
doctor is able to check to see why my levels
for certain vitamins are so low, and then I found
out that I was a little bit sensitive to glutenants.
So definitely, in your experience symptoms, if your children are
(28:11):
experience these symptoms, it's more important to go talk to
your doctor, because you definitely don't want to stunt your
child's growth in case they have this disease or limit
the amount of nutrients that their body can absorb during
the precious time that they're becoming adolescent.
Speaker 3 (28:30):
Right, and they can suffer from other things too, like
filiac disease can lead into other things, or they can
have other things along with it, like the auto immune disorders,
or some people with Down syndrome have it. Intestinal cancer,
which you don't want to scare anybody, but that is
(28:52):
sometimes related intestinal lymphonamphone lymphoma, lactose and tolerance, thyroid disease,
type one diabetes. Those can all be related or have
something to do with it in one way or another.
(29:15):
Or interesting too though, is thyroid problems in general can
cause a wide variety of issues. So you know, people
that are having any kind of medical problem should have
their thyroid checked. And I don't know how common that is,
but you know it should be looked at.
Speaker 2 (29:36):
Yeah, So basically, you know you're experiencing problems in your diet,
just add CELIAX or gluten intimes. Not to jump to
the worst worst of possibility, but it's good to be
aware and to be educated on becusing you know the problems,
and so definitely ask your doctor if you feel like
you're having these sensitivity issues and see a professional and
(29:59):
see if you can get help.
Speaker 3 (30:03):
Yep. Well, thank you all for joining us tonight.
Speaker 2 (30:07):
A problem and thank you Pamela. We'll see you next week.
Speaker 3 (30:11):
Yep for our reading tips and difficulties.
Speaker 2 (30:15):
Mm hmm. Have good night everyone, Bye bye.
Speaker 5 (30:33):
When I am done, unto my soul so weary, when
troubles come and my heart burden be, then I am seen.
(30:54):
Lady s
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