Lou Gehrig’s Disease (ALS) webinar hosted by Griswold Home Care highlights Fighting ALS from the Beginning.
Derek: Good afternoon everybody. Welcome to the Griswold Solution Series webinar
titled fighting “ALS From the Beginning”. I’m really excited to have this webinar with you today. We have an absolutely fantastic agenda to share with you.
Just a few housekeeping items. All of your lines are muted. We will take Q&A at the end of the call and we’re going to take about at least ten, maybe 15 minutes of Q&A at the end of the call.
However, during the webinar as these questions come up, feel free to type those in the question panel in the go to meeting channel. My name’s Derek Jones and we’re really excited to be here presenting on the topic of ALS and May is ALS awareness month.
At Griswold Home Care a lot of our clients have ALS so this is a very personal topic for us and we’re also glad to partner with our local ALS chapter here in Philadelphia and the whole premise of this solution series webinar, this webinar is all about identifying a topic and bringing solutions to you.
Those of you who are on the webinar, so you can work better with patients or clients who may have ALS. We think that the topic and the agenda today align perfectly with the mission priority from the ALS Association, which is to provide every person with ALS and their families access to high quality, consistent and compassionate support services.
A lot of great activities have been going on this month during May. The ALS Association kicked off their advocacy day, May 8-11 in Washington D.C. This is an annual event to kick off and raise awareness and here we are at the end of the month recapping some of those findings, but also bringing tools to you as well.
Really we want to take a step back and thank all of you. We have almost 150 to 175 registrants to this webinar across the country and what’s neat about this webinar series is that it’s not just geared towards one person. We have individuals who are health care providers on this call.
Those who are professional caregivers who are working with clients who may have ALS today. Family caregivers, you may be personally dealing with a loved one who has recently been diagnosed with ALS and those who may be living with ALS directly.
We think no matter who you are on this call, that the information and tools we’re bringing to you are relevant and we’re glad and very thankful to have you on the call today.
So the goal for the call today is to provide real stories and innovative tools that empower clients, family caregivers and health care providers to really do three things; recognize, diagnose and manage ALS and we’ll put the emphasis on the tools.
The Solution Series webinar is all about bringing you practical tools which we’re going to demo during this call so you can immediately after this webinar use those, whether it’s a loved one or a patient or a client.
Here to present, today, we have two fantastic speakers. We have Chris Kelly and we also have Wendy Barnes who is a licensed social worker with the ALS Association here in the greater Philadelphia chapter.
So what we want to do is I’m going to open the mic to have the presenters introduce themselves and we’ll start with Wendy. Wendy, welcome to the call.
Wendy Barnes: Thank you very much for having me on the call today. I have been a social
worker with the ALS Association in the greater Philadelphia chapter for about 13 years, since 1990 and since I’ve been there that long, obviously you can tell that I love what I do and I love working with the families that we have the privilege to meet through the chapter.
Some of the roles that I take on with the chapter include attending the ALS clinic. That’s a local hospital. I facilitate different support groups for current patients or caregivers. We also do bereavement support groups.
I do home visits with families and there are several programs through the chapter that I facilitate and coordinate for all of our families, so thanks again for having me on the call and I look forward to answering some of your questions.
Derek: Excellent. Thank you Wendy. Wendy, as you can hear, 13 years experience
working with the ALS Association is going to be on the call and answering questions during out Q&A session, so thank you again Wendy for being on the call.
Our primary speaker today is Chris Kelly.
Chris: Thanks Derek. Hi everyone. Really, really excited to be a part of the webinar
today. Much like Wendy, I spent most of my career working directly with people living with ALS and family caregivers, primarily as an activities director in a long term care setting.
Just want to recognize again as Derek did, how fortunate we are to have Wendy with us today to leverage all her great experience.
I just want to mention how much I admire all of you. I know Derek mentioned the different people we have on the webinar right now. If you’re a client or a family member, I just admire your courage, your persistence.
If you’re a healthcare provider, your skill and dedication and for the Griswold Associates and Franchises, again I just want to admire you for your great work you’re doing out in the field.
What I wanted to do now is provide some context related to the theme. When we say fighting ALS from the beginning, it really has two meaning. First we wanted to make sure that we were learning from and using the transcripts in great quotes that Lou Gehrig actually offered to us as he started to battle with ALS throughout his condition back in the ’30’s.
In the beginning, meaning from the beginning of his experience throughout his condition and then also want to make sure that we’re emphasizing the importance of recognizing growing symptoms and taking action related to the growing symptoms of ALS. So, fighting ALS from the beginning when symptoms first start.
We’d like to start on this first slide with just a brief overview of ALS. From the standpoint of the term that we typically use, I think ALS is used because it’s easy. It’s an easy term to use. The technical term or official term is amyotrophic lateral sclerosis, which is a mouth full.
So just very quickly, amyotrophic, the meaning is lack of muscle mass or muscle nourishment. Lateral means area of the spinal cord and sclerosis means hardening of the nervous system.
So due to the lack of muscle mass nourishment around the areas of the spinal cord, there’s this hardening of the nervous system. Even though we use the term ALS, I wanted to make sure that you understood the full term.
Obviously the other term that we’re very common with is Lou Gehrig’s disease and obviously related to Lou Gehrig’s prominence and just the impact that ALS had on his life. ALS is a neuromuscular disease that effects motor neurons which are like the messengers in the brain and the spinal cord and they really help the brain and spinal cord to control and effect muscle movement.
With ALS, the ongoing damage that occurs over time can cause motor neurons to die and again this effects muscle mass and the ability to move. When this occurs, it’s really, really difficult to initiate control of the muscle movement throughout the body.
Then in many cases as the condition progresses, it can even lead to paralysis. So obviously a really, really challenging condition.
On the right, we just wanted to provide a graphic so that it’s something you can refer back to, to see where the upper and lower motor neurons are and then specifically where the muscle groups are that are often effected with ALS.
Derek mentioned this term ‘solutions’. We have a really unique methodology that we’re proud of and that is proprietary to Griswold that we’re calling the Solutions Mining Process, where we want to make sure that from the solution standpoint, instead of requiring a lot of reading and searching on website that we actually bring the tools and solutions to you really to make things easier for you.
Whether you’re a client, caregiver or healthcare provider. The mining aspect is, rather than taking existing content and putting it out there, we wanted to really dig for new, current, relevant, reliable issues. Specifically barriers that people with ALS are facing.
So there’s really four layers to the Solutions Mining Process. The first is literature review. So to inform our blog in this webinar, we reviewed seven peer review journal articles and what’s great about these research articles is that they’re reliable.
A lot of rigor goes into development of research progress and the sample size that we reviewed totaled to a group of 9,000 clients and caregivers, which is great.
From a social media standpoint, we reviewed 500 discussion board postings so if you’re a client or a family caregiver and you’ve gone on a social media portal where people without, really unfiltered, just raw discussions that people had about their condition.
So 500 discussion board postings. We came away from those two layers with this idea of the importance of understanding the early signs of ALS, how to understand how those impact your life and really attack these issues from the beginning.
Our next step is to reach out to Wendy Barnes and share the topic, share all the materials, share the theme and really get a perspective from an expert that is working every day with clients with ALS and the families and then the final really is today.
The final layer is that in addition to presenting this information, as we go through the presentation there will be portions where I will ask you to actually go into your chat bar which we’ll talk about in a second and share your experiences with us.
The last layer is really learning from you and a lot of that information will be shared after the webinar. We’re really excited about the methodology that we used to come up with our topic.
Derek: Chris, thanks for covering the methodology there. When you reviewed the
literature review and social media aspects, the topics that were relevant and timely, what topics were you finding that were out there?
Chris: I think the two that were most common and you’ll see as we capture some of
these groups, are just number one, the ambivalence about what are the signs of ALS?
A lot of clients out there and family caregivers have seen symptoms that they’ve never noticed before, wondering what the symptoms are and then next, the people that have been diagnosed just wondering what the prognosis is and what to do.
That theme of “from the beginning”, let’s start from the very beginning and recognize the signs and symptoms and then help people move through the disease and live the fullest life possible.
I mentioned earlier this idea of chatting with us which we’re excited about. There’s a term we like to use called ‘brain writing’. It’s just a fun way that we can make sure we’re learning from your experiences and best practices so throughout the presentation listen for our questions.
When we prompt you, you see this graphic here? You can go into the chat bar and just answer the questions or add any insights that you would like to share that not only we could benefit here, but also the people on the webinar.
Don’t over think or agonize anything that comes to your mind. Just make sure you add it there. We learn through interaction between learners, instructors, caregivers, healthcare providers and that’s one of the great things about having a mixed audience with a webinar like this.
Derek: Fantastic. As you type in your questions there for the brain writing, we will
leave 10 to 15 minutes at the end of the webinar to answer any questions.
Chris: Awesome. As you all notice as we move through the presentation, we really try
to tell the ALS story through the words and experiences of Lou Gehrig and those people around him.
This first quote came from a great book called, “The Luckiest Man: The Life and Death of Lou Gehrig,” which was written by Jonathan Eig and it really captures this challenge of early symptom recognition. I’ll read you the quote.
He says, “I just can’t understand. I’m not sick. My eye is sharp, yet I was not swinging at the ball. I reduced the weight of my bat, 36 to 33 ounces thinking a change would work to my advantage, but it didn’t.”
The part about this quote that really jumped out at me was the first line, “I just can’t understand. I’m not sick.” We all really define being sick based on our past experiences with illness because ALS is such an unusual condition.
He was noticing that he couldn’t hold the same bat, swing the same bat and that he was potentially getting weaker but was really in denial that this in any way related to a health condition and it’s just expressing his frustration.
“I just can’t understand why this is happening?” It’s a really common challenge. One of the first articles that we reviewed related to this challenge that was from Anne Hodgson [SP] from 2012.
This was a study of 40 healthcare providers who were asked to identify some of the key barriers of early symptom recognition and diagnosis and we just pulled a great quote that says it all very briefly.
“Common ALS client barriers include access to ALS specific resources, symptom recognition”, which we just captured in a quote by Mr. Gehrig. “The timing of diagnosis”, meaning that people do eventually get diagnosed but there’s too much of a delay.
That people notice the symptoms earlier and take action and see the right healthcare providers that that diagnosis should be more timely.
When people are diagnosed, there’s an emotional barrier or people just have a difficult time accepting it. They have this idea that, this can’t be. It must be something else because I’ve not heard of ALS and this could be some other condition.
Then, finally that “once people actually start to see healthcare providers”, particularly if they’re staying healthcare providers that don’t have ALS experience “there are often disconnected in terms of the communication between care team members.”
Some really great findings that we’re going to speak to when we start to go through our tool kit.
What are some of the early signs of ALS? The National Institute of Neurological Disorders of Stroke calls out the following signs and I will walk through them.
What I’d like to do as I walk through these is look at your chat bar as we mentioned and as I’m mentioning each of these early signs, I want you to write in what you think other than ALS could be a cause.
The reason we’re doing this is to really show how these symptoms could be a number of different conditions and how it’s really difficult for people in the early stages to identify the challenges of ALS.
Any other thing that comes to mind that could be causing things like slurred and nasal speech, twitching particularly of the hands and knee, cramping in the feet particularly, a difficulty chewing or swallowing, muscle weakness affecting an arm or a leg.
Remember back to the quote Lou Gehrig mentioned just about the fact that he had to use a lighter bat and then finally stiffness of muscles. Many of these early signs, it’s not typical that people have these signs they think, “Oh, I have ALS.” People notice them, they don’t know what they are.
Often times they overlook them and don’t talk to a healthcare provider and then towards the bottom of the slide here, we really want to mention that as these symptoms progress and ALS progresses, these signs could become more severe, particularly difficulty with breathing and swallowing, particularly in the later stages of ALS.
Again, if you’re a person out there that has not been diagnosed and you have some of these conditions, it really would never hurt to bring that up with your healthcare provider and make sure that they’re aware and ask if there’s anything that you can do.
We really wanted to emphasize the importance of knowing the early signs.
The next component of the presentation that’s important I think is that there are early symptoms or early signs of ALS, but the other important pieces other than the symptoms as ALS progresses, someone may notice actual changes in their daily activities.
This is a quote, again capturing some of the challenges that Lou Gehrig dealt with, particularly around daily activity. This was from a player that had noticed that when Lou Gehrig was with the Washington Senators and they went to Detroit, they heard from some of the bellhops that Gehrig had fallen down the lobby staircase on his most recent visit.
Now imagine at this point when this quote was stated, Lou Gehrig was still playing baseball. That’s again, he may have thought he tripped down the stairs, but we want to make sure that not only the early signs is important, but we also want people to look for any changes in their daily activities, particularly patterns that occur.
Let’s look at some of the other daily challenges that can occur. This is again a great, great list of things that can happen related to ALS. They came from a journal article review by Richard [inaudible 0:18:23] and this was an article from a few months ago.
“That if someone has ALS, it can impact the following activity: you may notice changes in your ability to write, how quickly you write, the way you write your letters. Your ability to articulate your thoughts in writing. Your ability to eat and that could actually be using utensils and then also your ability to swallow while you’re eating.”
Really, really interesting, I noticed on the ALS Association website that not only when people notice changes in walking, but what seems like a signature symptom or change in activity is tripping over the carpet edges, as people walk in areas where there are carpets that people might trip over or changes in the height in peoples walking path.
The ability to dress, particularly, we’re showing a button here, particularly around fine motor skills, things like buttoning your shirt. The ability to climb stairs, and in this case we’re not talking so much about the exhaustion as the physical ability to put one front in front of the other and to climb a staircase.
Salivation, some people describe that they salivate more than they typically would. Then finally, the ability to turn in bed and not only do that, but we all at night might turn and adjust our clothing and people that were able to do that easily found that it was more difficult to do those things.
I really want to stop at this point and just emphasize again that sometimes it’s important to not only know the early signs, look for the early signs, but also think about how ALS might be impacting your daily activities and when you combine those things and look at the big picture, if you have any concerns definitely reach out to the ALS Association and talk to your healthcare provider.
In your chat function this is another great opportunity, if you’re someone that has ALS and has dealt with some of these earlier signs had any others to add or any other experiences to share, you can just go right into your chat bar and share those with us, so we can learn you.
The next quote came from an actual Doctor, Lou Gehrig’s Physician in the Mayo Clinic when he was being evaluated and again some, really what I like to call, power words in the quote, and I’ll read it. “When I evaluated Mr. Gehrig, there was some wasting of muscles of his left hand, as well as the right, but the most serious observation was the tell tale twitching or tremors of numerous muscle groups.”
That very insightful quote came in the 30’s, I just was interested in seeing how this Physician was so knowledgeable and it actually turned out that he had a family member that had ALS and had learned a lot about it and knew that one of the first tell tale signs to look for is this twitching or tremoring that you might see in muscle groups, particularly in the hands.
Then, when we say ‘wasting’, we mean that a person actually loses muscle mass, so you’ll see people that look like they’ve lost weight to certain parts of their body and they might actually lose the volume or muscle due to the ALS progression.
Those were some of the great findings that we wanted to share, both the transcripts with Lou Gehrig and those around him and then also from some of the articles that we reviewed.
We want to shift now and talk about our social media, the social media work that we did, and again these were reviews of 500 discussion board postings and what we do instead of showing the entire quote that people have posted is we actually look at the subjects that they’ve used.
If anyone has ever written an email or posted on a discussion board, the subject is your way of in a very brief way, sharing what your issue is. It’s amazing to read these quotes in the year 2013 and see how similar they are to what Lou Gehrig was talking about in the ’30’s.
I’ll start on the top right. “It is probably stress related, but I have to ask.” This was someone that was having early signs and had already made the judgment or assessment that it was stress related. They’re already sort of coming in with a double answer, thinking it’s probably nothing, but I have to ask and then a number of clients had come in and encouraged that person to get evaluated.
Moving down to the right. “Right and left leg feels weird.” Now again, when I read this I thought it really, really captured how difficult it must be for clients to describe the feeling and how difficult it must be if you’re a healthcare provider trying to evaluate ALS when someone says, “My right or left leg feels weird.”
Think about all the different things that might cause that and how vague that statement is in terms of what this feels weird means. Another really common state of ALS or cervical stenosis, so I would say about 30% of the subjects I went through were people asking is it ALS or another condition?
Again, there’s a lot of cross over between ALS and neurological disorders. Any possible way that it’s not ALS. This person, when I read through their postings, there just was a lot of anxiety where they were told that they had ALS and were coming on to it, they didn’t think they did and wanted to ask is there any way I don’t have ALS?
Then, at the top left, the final subject that we wanted to share. “Severe breathing problems, twitching, atrophy, no diagnosis, please help.” In this case, it was someone who was dealing with all these symptoms, which if you think back to the early signs and symptoms list are almost identical.
In this case, they were told they don’t have ALS and were asking for a second opinion, another Physician or healthcare provider agency for a diagnosis. Again, the social media findings again reinforce this idea of the importance of early symptom recognition.
Let’s shift and talk about the next barrier we called out in one of our first articles and that is, “How do you get an early accurate diagnosis? Especially with a condition that is so rare and difficult to explain?”
This was really the layer where we reached out to the ALS Association. We had a number of discussions with Wendy, looked on the ALS Association’s website and came away with these following recommendations.
A person would want to get blood and urine studies, x-rays and the two that are most common are MRI and myelogram and for those of you who aren’t aware what a myelogram x-ray is, it’s really where someone gets an x-ray with a special dye that they use to view the spinal cord for some of the changes that we talked about earlier.
Electrodiagnostic test to evaluate the body’s electrolyte activity. Spinal tap, muscle and or nerve biopsy and then finally a neurological exam.
We wanted to pull up a great, great page on the ALS Association’s website where they can actually link you directly to an ALS Center for Excellence. These are centers where everyone under that roof is an ALS expert, a multidisciplinary care team.
We really recommend that you click on the center drop down, you can search for different types of centers, chapters and support groups and you drop down the ‘select state’, you can actually select your state and when you hit go, you’ll be served up the actual centers that are actually in your territory.
This is not to say that the neurologist you might be seeing isn’t a really good neurologist, but obviously if there’s a Center for Excellence in your area, it’s a great contact for you.
Derek: That’s a great resource. That link is included in the slide that we will send out
after, also for most of you if you use Google, if you Google just ALS, Center of Excellence, the first result will bring you to this page where you can find your local ALS Center of Excellence.
Chris: Thanks, Derek.
Wendy: Chris, I just wanted to mention on that slide, not every state has an ALS
chapter. For example, actually Pennsylvania has two. There’s a chapter in Pittsburgh and there’s a chapter in Philadelphia. North Dakota and South Dakota are covered under one chapter.
Going to our website is a great way to track down the nearest one. It may not be directly in your state, but there typically is a chapter that will cover or that you can contact and help get services.
Then I wanted to just clarify these ALS Centers of Excellence. Many states have ALS Centers. They have ALS certified ALS clinics at them, but for example in Allentown, the Lee High Valley Hospital has an ALS clinic, it’s not an ALS certified center, but it’s an excellent clinic.
The chapters will know that as well when you call them and look for some place to go that’s relatively close to you. They’re not all ALS certified. There’s some that are just supported by local chapters.
Again, just the best thing to do for somebody out there that’s looking for help is to tap into your state, look for the place that’s closest to you and then give them a call.
Chris: Awesome, Wendy. Thanks again. A great, great suggestion and that’s an
example just everyone on the call, the kind of expert advice and background that you can receive by calling the ALS Association, but thanks again Wendy.
The next quote, we’re going to shift a little bit. Once someone is diagnosed with ALS and the condition starts to progress, what we learn from reading through the transcripts from Lou Gehrig’s interviews was that there’s eventually this need to adjust, to role changes, changes in daily life.
This quote is very moving. “I decided last Sunday night on this move. I haven’t been a bit of good to the team since the season started. It would not be very fair to the boys, to Joe McCarthy or to the baseball public for me to try to go on. In fact, it would not be fair to myself.”
As Mr. Gehrig’s condition progressed, he went from playing full time to playing part time to moving to the bench and being a bench coach. He really lived this idea of continuing to fight. Yes, your role may change, but if you adjust there are still ways that, in his case ways that you can contribute to the team as best he could.
Again, just around the great program that the ALS Association has, there is some great information about coping with change. The brief types of changes that often cause clients to adjust or symptoms or number one, as people become weak or unable to maintain some of the physical activities. They may have changed their routine.
As Lou Gehrig mentioned in his statement, he might have to change roles which can be very difficult. Then, based on the prognosis you’ve been given and the rate that your condition progresses, many time it obviously changes your plans for the future and how you plan for the future.
We’re going to show this brochure, but I just wanted to call, as we get through the presentation, I just want to call out the link here that the ALS Association has a great brochure that talks much more in depth about these changes that can occur and how you can manage them over time.
I just want to call out again just from my personal experience working with people with ALS how courageous all of you are and you don’t quite and that’s why we have that word fight everywhere in this presentation and we encourage you to continue to do so.
In keeping with the baseball theme, we felt we’d have a little fun with this slide and call your Care Team, the starting line- up. One of the things I want to point out just to re-emphasize the importance of the ALS Association, is this slide shows all the different healthcare providers and experts that could be a support to someone with ALS in the family, but your first stop should be the chapter of the ALS Association.
What we’ve done here is given you the national associations website and also the 800 number. Obviously, the national associations are a great website and resource, but they can also direct you to your local chapter and that way you can get local resources and work with experts like Wendy Barnes.
In addition to the ALS Association, they can also direct you to a number of different experts and healthcare providers. Number one, most important is the neurologist that specializes in neuromuscular disorders. There are many neurologists out there that are terrific but don’t have ALS experience.
Nurses are playing such a huge role. Social workers are important in terms of making sure that you are able to access resources and also cope with emotional challenges that you and your family may be going through.
Occupational therapists, speech therapists and physical therapists are really critical for people who want to maintain work roles, maintain communication, maintain strength and activity. Respiratory therapists for changes in your ability with breathing challenges and again, psychologists, psychiatrists, dietitians, massage relaxation therapists can help.
We wanted to make sure that you knew if you go through the ALS Association, they can help you to direct you to experts in the field and that way you don’t have to go searching through the phone book to find them yourselves.
Wendy: One other person I would like to talk about a little bit is called an Assistant
Technology Specialist and what their role would be, and some of the chapters have them or some of the clinics have them, but there’s usually some that are local, maybe at a local rehab hospital. The abbreviation would be an ATP.
What they do is hook you up with communication devices, devices that can help you utilize your computer. They’re the experts in ways to adapt wheelchairs, ways to adapt using a doorbell, opening a window, kind of all the gadgets and gizmos is what we call them that will make life easier for someone who’s dealing with ALS.
I apologize, I forgot to put that one on the slide, but they are a really important person as well to have on your team.
Chris: Absolutely, Wendy. Thanks for adding that and maybe as we get into the tool
kit, Wendy we can have some tools related to some of the actual links where people can find some of those devices and experts. So we can even talk more about that. That’s a great point.
We’ll end the Lou Gehrig quotes with two that really captures the spirit and courage of people that are living with the condition.
The first quote: “You have to get knocked down to realize how people really feel about you. When you have a who has been a tower of strength and shown more courage than you teemed ever existed. That’s the finest I know.”
Then second quote: “I might have been given a bad break, but I’ve got an awful lot to live for.” That is just, across the board with clients that I’ve worked with, with families.
Just as I read through all the transcripts in Lou Gehrig interviews, at the end of the day people come out swinging and they come out wanting to have the best life possible and also with a real appreciation with all the support they have from people around them and the services around them.
Derek: To touch on what Chris said, coming out swinging means a lot of things. It’s the
attitudes of the approach to after you’ve been diagnosed. Maybe you’re a caregiver on this call and you support someone who is living with ALS.
What we want to transition webinar into now is doing just that, is providing you with practical tools that are going to help you recognize, manage and work with either yourself or clients who may have ALS.
Now that Chris has reviewed a lot of findings from literature review and client discussion boards and social media and our conversations with the ALS Association, this is the point where we’re going to transition into actually demoing actual tools that are actually available for you immediately after the webinar for anybody who may be diagnosed or working with ALS. So we’ll transition right into the first tools.
Chris: As we’re going through the tools, again this is a great opportunity for you to go
into the chat bar and if you’ve used any of the tools here that we’re going to go through, let us know how they helped you and if there are tools that we haven’t covered, it’s great if you could share them with us and that way we can learn from you as well.
On the first page, we have what we’re calling our “Fight ALS Action Plan” and have really four key steps. The first one is learn about ALS and how to manage symptoms as a first step. Hopefully this webinar has helped you to do that, to get a start with that.
The second is to advocate and the links here take you to the advocacy portions of the ALS Association website and just gives you great opportunity. The one thing is ALS can make you feel helpless, feel like there’s nothing that you can do.
You hear there’s no cure, but from an advocacy standpoint there’s a lot that you can do to fight back and to advocate for resources and services and improved care. Obviously, donations help the ALS Association to support their programs and services and research.
Then from a research standpoint, we definitely need to make sure that we’re looking for new treatment options, so that instead of having one option that is not a cure, we can get to a point where through clinical trials and research that we’re able to eventually cure, prevent or delay ALS. That’s the fight ALS action plan.
The next slide is really our tool kit that we’re really excited about, so we’re going to dive into some of these tools so that you can see them and again you have the links there so that when you receive the presentation, you can look through the tools again.
The first is the “Living a Full Life with ALS” brochure. As a health educator, I just absolutely love this brochure. I remember sharing this with Wendy. It is a great resource for people regardless of where you are in the progression with ALS.
There’s information, if you look at the table of contents, it includes personal stories, living with ALS, getting a diagnosis, how to talk about ALS to children and family members. It includes personal testimonial so you can see how poignant just these short books are from Lou Gehrig.
It’s even more strong when you can actually read through more detailed stories of people’s experiences. It talks about from a prevalent standpoint who gets ALS. I just love the tone, the creative, just the entire brochure is really spectacular. If you’ve read the brochure and it’s helped you, let us know.
If you haven’t, we definitely recommend that you access it and just because of how comprehensive it is.
The second tool that we want to go through is one that we identify through our literature review and this is the title, it’s a little bit clinical but it’s the “Self Administered ALS Functional Rating Scale”.
There is a functional rating scale that healthcare providers typically use. It’s a validated scale which means it’s been proven in resource to work, where it allows the healthcare provider to do an assessment to figure out, number one, what are the symptoms that you’re dealing with and how do those symptoms impact in your ability to function?
What’s great is that they’ve developed a client and caregiver version, where instead of waiting for a healthcare provider, you could actually use the tool that we’re scrolling through here to actually assess changes yourself.
Then obviously, you would bring that to your next appointment with your neurologist or your care team and it’s just a great way to help you to understand what the symptoms are and then identify them and communicate them to your healthcare team.
The next tool is very relevant to the comment that Wendy had added earlier around the importance of resources related to assisted devices. If we dive into the assisted devices, you actually have an opportunity, if you scroll down the product list, when you see the drop bar it just gives you a list of the different types of devices.
If you click on personal care aids, rent and lift systems, travel resource guide, wheelchairs and mobility and if you click that, that will basically take you to and you click submit, that will take you to the resource that will be able to help you access that tool and there’s a lot of great information around the experts as Wendy mentioned that can support you in working with those devices.
Derek: Yes, that’s a great site. So if you’re a healthcare professional and working with
anyone who has ALS or a family caregiver that’s a great resource. If you’re aware of other assisted devices or any new devices that you were using to assist, please type those into the chat bar, we’d love to share those with the group as well, once we get to the Q&A session.
Chris: The last tool that we want to show, there’s obviously more tools here, but just to
stay within our time frame is the ALS Association video series. Again, if you look at the titles towards the bottom of the page, mobility, activity, living, home adaptations, adjusting to swallowing difficulties, good nutrition, communication, critical care management discussions, adapting to breathing changes.
My background is in adult learning, it’s proven it’s a lot easier to take information when it’s presented in a visual way. A lot more emotional so if you’re dealing with some of these things, you want more information about these things, these videos are terrific just to learn more and see things in a more visual way.
Those were four tools that we identify as part of the solutions tool kit and those were for people living with ALS. We will quickly go through, if you’re a healthcare provider, attending the webinar again really impactful tools that you may be aware of.
If there are other tools that we haven’t captured here and you want to add them to the chat bar that would be great. The first one is the clinical criteria for diagnosis.
I hope you’re all walking away with just an understanding of how difficult it is to diagnose ALS. It’s great that the [inaudible 0:42:16] World Federation of Neurology has publised a criteria for diagnosis and what’s great is the ALS Association offers this on their web site.
We provided the link for you here, so for providers, it’s really the most up to date validated tool that you can use to understand what is the criteria for diagnosing ALS. The second tool is actually the professional version of the ALS functioning rating scale.
In my mind and to help educators, the best scenario is the client and caregiver have a self assessment version, the professional as the version that they administer and that using both tools, would probably get you the best results.
You have access here to the short form, the long form, the assistant questionnaire, assessment questionnaire and then also exploring and the care giving burden scale. So direct access to some great tools that can help with identifying changes in function.
Then, finally towards the bottom of the slide the American Academy of Neurology publishes a practice parameter guideline and this is the most recent update on ALS treatment and management.
We haven’t talked a lot about actual treatment approaches. This is a great tool you can use to just get the most up to date information about validated treatment options and share them in an appropriate way with clients and family caregivers.
I know we already mentioned this, but we wanted to make sure, and Wendy you can jump in and add in any other thoughts here. we wanted to make sure we were emphasizing the amazing work, program, advocacy that you have at your fingertips with the ALS Association.
This is the main URL, www.alsa.org and then we also provided again the 800 number and again, just it saves you a lot of time just accessing the resources that can help you and just a wealth of information to understand and manage your condition.
Wendy: I think that’s a great place to start, is the National Office, which is in California.
From there, they can connect you with your local office for questions, concerns, advice, who do go to, recommendations.
They have a wealth of knowledge and we work specifically and only with ALS. I did want to mention quickly that ALS is considered a form of muscular dystrophy so a lot of you have heard of the Muscular Dystrophy Association and the Jerry Lewis Tele-a-thon.
That association works with all of the different muscular dystrophy diagnosis and I think there’s 30 or 40 subdiagnosis. ALS is one of them, but the ALS Association specifically works with ALS. We do work in conjunction with MDA and they offer some great programs as well.
Chris: Awesome. Thanks Wendy. I’ll just close with my portion of the presentation
which is just key take-aways, points to remember.
First, I know we’ve mentioned this a number of times, but it’s important to recognize the early signs of ALS and get an early accurate diagnosis. Hopefully, the webinar and the tools and Wendy’s advice and the ALS Association can help you do that.
Second, that a client to family caregiver should be supported by a team of ALS experts and those experts should be able to ensure early expert diagnosis and treatment, provide support, education and resources related to the condition for not only the client but also for the family.
Overall, really the goal of all this should be to try and improve the quality of life for all people living with ALS.
Derek: Great. Thanks Chris and thank you Wendy. Now that we’ve walked through a
lot of the history of Lou Gehrig and his recognition of his diagnosis and connecting that theme of recognizing ALS from the beginning, now we connected all the viewers and listeners with real tools that you can use today or tomorrow.
Now of course with these tools, we will send out presentations after the call. We know you want to dig into those and click into those links, so that will come shortly after the webinar.
We know we have a lot of folks on the call today who have already asked a bunch of great questions and we want to turn the call over to you now, the listeners.
If you have any questions about any of the tools that have been presented, any of the review that we’ve done from social media or literature. If you have any questions at all for Wendy at the ALS Association on resources that are available, we want to open the call to you to ask any questions.
We’ll take questions and answers for about 15 minutes and again you can type those questions in the go to meeting panel.
There’s an orange button that is pointed outward or to your left and if you press that, the go to meeting channel opens and you can type in your question down in the question panel.
You type those questions in, we’ll read your question and we will pass those questions to Chris and Wendy.
We have quite a few questions already which we will start answering and while we’re answering those questions, if any questions, comments come up, please feel free to type those in.
We have our first question from Ruth Ann Russell [SP]. I think this would be a great question for Wendy. The question is, “What is the average life span after a person has been diagnosed with ALS?”
Wendy: The literature states that the average life span from diagnosis is 2 to 5 years.
Now, let me just say that most families do not have an easy time to get an official diagnosis. It may take six months. It may take them a year to finally figure out that ALS is what the neurologist has determined that they have. The families may go through surgeries. They may go through numerous MRI’s and spinal taps and really what has to happen is all these other issues, all these other diseases have to be ruled out.
You would rule out a stroke, you would rule out carpal tunnel, you would rule out Lyme’s disease and it really can take a very long time to come up with a diagnosis of ALS.
No neurologist really ever wants to give that diagnosis out. That being said, the literature saying and the research saying, 2 to 5 years, I’m working with families who have been around for 15, 20 years.
I’ve worked with families who we see them probably very late in their diagnosis who have lived just a few months. There really is no good answer to that.
I think everybody is very individualized and I think that’s one of the toughest thing about ALS is that they’re really is no standards. Everybody is different. Everybody’s course is different.
We have the research and that tells us the two to five years, but we have many, many people who have lived longer than that and we have people that haven’t lived up to the two years.
Derek: Great. Thanks Wendy. We have a couple more questions, so we’ll keep you on
the line here. The next question comes from Janet [inaudible 0:50:24]. Janet thanks for attending the webinar.
Janet asked, “Can a person with ALS in advanced stages be cared for adequately at home, and if not, where do people spend their later stages? Assisted living? Nursing homes or are there specialty residences?”
Wendy: Definitely people with ALS can be cared for at home if they have family
support or if they have the financial means to pay for care.
What we recommend to every family is when the diagnosis progresses to the point that they have decided not to go on a ventilator, we would recommend that they start with hospice services.
Now, obviously hospice does not provide 24-hour care, so there has to be support from family, maybe private caregivers, but we’ve been very successful in supporting families to keep their loved ones at home.
In certain situations, we have patients without family support or that maybe are very medically involved that still need to go into a nursing home. There’s a few, I don’t know, that there’s many, but there are a few ALS specific facilities out there, but generally you would be looking at the local nursing homes in your area and I’ll be honest, you really have to spend some time talking to that facility.
See if they have the capabilities of caring for someone with ALS, because in some instances there is a lot of medical concerns and things that are needed. Honestly if there is this family support, I think with a support of your clinic team or your medical team, you can definitely keep a family member at home.
Derek: Great. Thanks Wendy. Another question that may be more of a fact that we don’t
have right on with us, Wendy, but you may know. Eddie Reynolds is asking, “What is the incident or how common is ALS?”
Wendy: You know what? What I can do while we’re talking is try and look up on our
website what the numbers are. We’ll go back to that one.
Derek: OK. Sounds good. We have a couple of other questions about the tools that were
This question comes from Eddie, again. “Will the resources and websites be available after the webinar?”
Absolutely, Eddie we will send out the, if you registered for the webinar, we will send the entire presentation to you. The recording will be available to you within 24 hours.
Specifically, Eddie has asked, “Is the pamphlet available for download after the webinar, as well as one of the other tools, the ALS appendix?”
Absolutely. That PDF is available for download as well as it can be viewed on your web browser. Keep the questions coming in.
We have a couple of other questions or comments at the top just about the common symptoms of MS and some other people were commenting on what those might be.
Chris: Yes, this is great. If you recall when we were going through the presentation,
we asked what some of the symptoms or conditions that would mimic or seem to be very similar to ALS.
Some of the answers, Kristin [SP] had mentioned stroke, a great, great thought. Parkinsons, MS, which again are neurological disorders. Some of the symptoms are very similar.
Katherine [SP] had mentioned cramping can be caused by low electrolyte, dehydration, often confused or misdiagnosed with CBA or TIA, which are mini strokes, central tremor, myesthenia gravis, MS, electrolyte imbalances. It’s a great, great list there and really captures how complex the diagnostic process can be for both the client and the healthcare provider.
I think this is a suggestion where a best practice that Cathy Howard [SP] called out in the case that she had worked in.
The VA provided a former client diagnosed with ALS with a hoist that was mounted to the ceiling and this enabled him to transfer safely from bed to motorized wheel chair as he was too large to use a voyeur lift.
Thanks everybody to responding to the chat request and for Cathy for sharing that best practice. Wendy, I’ll ask you. There’s a question from Ruth Ann Russell asking, “Is ALS a genetic concern?”
Wendy: Yes. ALS does have a familial component to it. It’s a low percentage. We
do have several families we work with at our chapter that there is a familial component to it.
What we would recommend is that you talk to your neurologist about, many families come to us asking if their children should get tested. There’s a lot involved with trying to determine whether anybody else in the family would have the chance of getting ALS.
Just to clarify, there’s sporadic ALS, which just somebody gets ALS. There’s no history in the family. Then the other is the familial ALS. Again, familial is definitely a rare form, but it does have a genetic component.
Chris: On the same line for me, Wendy. What is the common age for ALS diagnosis
and what is the youngest age? I think they’re asking that you’ve seen for an ALS diagnosis.
Wendy: The youngest that I’m working with right now was 19. The oldest, we’ve had
people diagnosed in their 80’s. They say the average age is between 50 and 70 years of age, but really you know what? We’re seeing every age.
It just really, again, no rhyme or reason to this ALS diagnosis. We just cannot figure out why and why it’s effecting who it is, why there’s such that wide age range and it makes it tough when you’re dealing with somebody who’s 19 versus somebody who’s 80. You’re doing different things for each of those families.
Derek: Absolutely. Thanks Wendy.
Wendy: I did find my stats. I don’t have that number brain that some people do to
remember all these facts, but back to the one question regarding the incident. Approximately 5600 people in the US are diagnosed with ALS each year. The incidence of ALS is 2 per 100,000 people. It is estimated that as many as 30,000 Americans may have the disease at any given time.
I can tell you our chapter, the greater Philadelphia chapter has usually anytime between 800 and 900 families that we’re working with. So that gives you a little insight into the numbers.
Derek: Great. Thank you. Let’s see, we have a question from Jan and Jan is asking
“Parkinson’s has been linked to dramatic brain injury history, does this also apply to ALS?” Wendy any comments there?
Wendy: That has definitely been in the media lately. We’re seeing football players. We
actually are seeing a lot of football players and sports figures being diagnosed with ALS, so it is definitely something that the researchers are looking into and has definitely been in the media quite a bit lately.
Derek: All right. Great, Thanks. Another comment from Edie here and Edie, I
apologize I mispronounced the name as Eddie. I apologize about that, but Edie just commented.
“Thank you to all the webinar participants”. Edie has cared for many ALS patients and Edie is just confirming it takes a multidisciplinary approach and respite care for caretakers. There are many issues along the way including respiratory, nutrition, skin, UTI’s and communication as well.” So thanks Edie for that insight.
We are right at the hour, so we want to thank our presenters, Chris Kelly and Wendy Barnes, as well. Thank you very much for all the attendees.
We will have all the information and the slides back out to you at the end of the webinar and we’ll also have a recording of the webinar that you can share with anybody as well.
We just want to take, again a moment to thank you and just to close, Griswold Home Care is a national home care services company. We have served over 100,000 clients. Many of who have been diagnosed with ALS.
Our founder started the company 31 years ago and has been living with MS, actually, for over 30 years. We have over 170 territories in 34 states across the US.
If you ever have any needs for home care services, we are always here and would love to connect you with resources no matter what condition you may have, but including ALS.
Again, I want to thank our presenters today and have a great week.
For more information, please review our Amyotrophic Lateral Sclerosis (ALS) Resources.