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ALS Registry

March 2014

 


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Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

Is this ALS? Seeking a Diagnosis When Symptoms First Appear

Dr KasarskisQ: I have a few symptoms that make me worry that I might have ALS. I’ve heard it sometimes takes a long time to know for sure if you have the disease. I think it’s time to see a doctor.  Should I go to my general practitioner? And what tests are needed to make the diagnosis?  Wayne R.

A: You’re asking very important questions. And you’re right; it takes on average about nine to 12 months for someone to be diagnosed with ALS, from the time they first began to notice symptoms. Getting the proper evaluation in a timely way is important, especially since we have a drug, Rilutek, which has been shown to help delay the progression of ALS. Should you have ALS, the sooner you start on the medication, the better.

Why does it take so long to get a diagnosis? Unfortunately, there is no blood test for ALS. Scientists are working hard to develop such a tool because it would not only speed up diagnosis, but also it might help physicians monitor the course of the disease and evaluate the value of potential treatments. But we’re not there yet.

As I have mentioned before, ALS does not start abruptly. Consider Lou Gehrig.  At first he never dreamed he had a disease.  That’s the same problem all of our patients face. They have some age-related bang-ups and other health issues, including everything from arthritis to diabetes. If they twist their ankle or stumble a little when they’re taking out the garbage, they think nothing of it. It has to register in their mind that what they’re experiencing is something new that isn’t going away and needs medical evaluation.

Such was the case with Gehrig.  Early in his disease, he thought he was just getting older and was out of shape.  But because he was such a great athlete, his usual .343 batting average only slipped to .295 in 1938, which was still terrific but not anything like he had been doing. During that year, his performance was slowly but consistently falling off. He had no clue in 1938 that a dreadful illness was unfolding and did not seek medical attention until the following year.

In my experience, patients who have "bulbar-onset" disease generally come to medical attention sooner than do others. Because their speech is typically affected, others will most likely notice their problem and say something about it. Perhaps an adult child from out of town will call her parent and think her mother has had a stroke or is drinking because her speech is slurred.  Or someone who sings in church notices his voice is not the same. These patients will likely go to an ear-nose-throat (ENT) specialist right away, and he or she may be able to realize the problem is something neurological. 

But start with your general practitioner. Since ALS is uncommon, the process usually takes a long time and may involve many health care professionals until the correct diagnosis is established.  For example, depending on the nature of your symptoms, you will most likely be referred to a physical therapist, a rheumatologist (who specialized in arthritis), or even a neurosurgeon.  If your physician thinks the issue may be neurological, you’ll eventually be referred to a neurologist, who is a specialist in neuromuscular diseases and problems of the nervous system.

The neurologist will first want to rule out other diseases that can cause serious weakness, such as myasthenia gravis or Guillain-Barre Syndrome. You’ll be given a thorough physical exam and will be asked about your personal and family medical history. You’ll probably have an EMG and nerve conduction study to help pinpoint the site of the problem (muscle, nerve, or the motor nerve cells in the spinal cord).  You will most likely have an MRI or CT scan of the spinal cord or brain, checking to see if a back disk or compressed nerve root may be causing your symptoms. Sometimes the neurologist will want a muscle biopsy, an outpatient procedure, to better understand what is happening.

Should you end up with a diagnosis of ALS, I recommend you get a second opinion from another neurologist, preferably a person who specializes in ALS. As you can appreciate, the disease can be challenging to diagnose, and so it’s important that you be certain that the problem has been clearly defined.  Just last week I had a woman in the clinic who was concerned that she might have ALS.  But as it turned out, she had an unusual problem of a disk in her thoracic spine (mid-back) that compressed her spinal cord and caused weakness in her legs.

If you have sought care at a large medical center, your case may be discussed and evaluated by a team of different specialists.  You can also send your medical record, test results and images electronically or by disk to another neurologist for review.

You can see why the process can end up taking months. It can take weeks to schedule an appointment with each physician, and then it takes time to do the tests, get the results and plot the next step.

Whenever ALS is a consideration, the anxiety levels are high because of the seriousness of the disease.  I encourage you to seek medical attention so you can get the care you need as soon as possible.  And I wish you all the best!

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Ky., professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington, Ky.

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Five Resolutions for the New Year

By Barbara Bronson Gray, RN, MN

2014 CalendarThere’s nothing like a fresh, clean calendar, yet without goals and plans, 12 months of pages to fill can be daunting.  But taking on 2014 armed with resolutions about how to best tackle and enjoy the year’s challenges and possibilities can provide an important sense of direction and purpose.

Nancy Sterling, a 58-year old Maryland physical therapist with ALS, suggests five New Year’s resolutions for others with the disease:

1. Plan for some fun. It doesn’t have to be anything major, Nancy says. Gathering friends and family for just about any reason can be fun. For example, she has friends come over for a “dinner and a movie” night every month. The meal is pot luck. Although she gets her nourishment through a PEG (stomach) tube, she enjoys seeing and smelling the food.

Nancy has a friend with ALS who had a leaf raking party. He’s a singer, so many of his friends serenaded him while they gathered leaves. Nancy, who was a singer, too, enjoys having four friends rehearse at her house on Sundays after church, giving her caregivers a chance to get out for a while. The quartet asks her for coaching, which she loves to give – through her DynaVox (a speech-generating device).
Nancy says she loves to go to the theater:  “I feel normal there.” She can sit and watch the movie just like everyone else, she adds.

And don’t forget to consider travel.  “Your ALS Association care coordinator can help you contact the local chapter at your destination and may be able to help you borrow equipment to use while you’re there,” she suggests. “I was able to borrow scooters in Dallas, Calgary and Ft. Lauderdale.” When Nancy went to Hawaii, she brought her own power chair but borrowed a commode/shower chair and a walker. She was also careful to reserve handicapped-accessible hotel rooms.

2. Read the books and watch the movies you’ve always wanted to get to.  Whether opening up a valued tome or using an e-reader or a computer, reading is relaxing, stimulating, eye-opening, and a terrific diversion, Nancy says. You can also enjoy books on tape, get a book on your DynaVox, or control a CD player with the speech-generating machine. Or have a friend come and sit by the fire, and read to you the old-fashioned way, for a little fellowship!

Nancy uses a special pillow to prop a book or an e-reader up on her lap at just the right angle. She recommends one made by Hog Wild. “It holds the book up for you so your arms don’t get tired, something that's especially importantPillow Book Holder for a reader with ALS,” Nancy says. The pillow is available at amazon.com.

For movies, she suggests scouring the offerings on Redbox, Netflix, Amazon, and local cable stations. Whether you prefer musicals, comedies, dramas, mysteries or even documentaries, there are literally thousands of options.

Pillow Book Holder3. Plan ahead. Nancy recommends that people with ALS strongly consider “banking” their voice in case they lose the ability to speak.  If you bank your voice, you’ll be able to say what you’d like – in your own voice – with the help of a speech-generating system. Talk with a speech therapist or your ALS Association technology specialist about how to record your voice.

4. Practice gratefulness.  That can be tough to do when you’re dealing with a condition like ALS, Nancy admits, but she finds actively giving thanks helps her keep her perspective. “There is always something to be grateful for,” she says. Some people keep a gratefulness journal to help remind them of the good things happening in their lives when they’re blue, she notes.  “I thank God every day for the gifts I have been given: my ability to communicate with the speech-generating device, my family, my caregivers, the beauty of a full moon, the birds that come to the feeders just outside my window, and the friends who have helped me adapt to the many changes ALS brings and still love me anyway!”

Nancy has also started writing to people who have influenced her life: her high school principal, to thank him for her education; a fellow swimmer who once befriended her; her swimming coach, to tell her how much her encouragement means to her now; and others. “Those emails have a ripple effect, sending good wishes back to me. You never know how much other people might need to hear what you say to them!”

5. Give back. Whether you decide to participate in the ALS registry, form a Walk to Defeat ALS® team, or find a clinical trial you could be part of, doing something to help understand and fight ALS not only allows you to make a big difference, but it is rewarding, Nancy says.

Learn more about the ALS registry, the Walk to Defeat ALS and how to find clinical trials that might be right for you.

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Paws to Consider

By Barbara Bronson Gray, RN, MN

Service Dogs

If you’ve ever thought you could use a little extra help from a full-time friend with a great sense of humor and a lot of energy, a service dog may be a good option.

Service dogs are specifically trained to help people who have physical disabilities and other impairments. These canines can provide physical assistance and security, and even help pick-up dropped items, open and close doors, and turn lights on and off. But most of all they provide constant love and companionship.

Before deciding to get a service dog, talk with your physician about whether the prospect makes sense for your situation. Also discuss the concept with your family and caregivers to get their support and buy-in about the idea.

Know that the rate of progression of your disease may make it more difficult for you to obtain a service dog. It can sometimes take up to two years after you request a service dog for one to become available. So if you’re newly-diagnosed with ALS, you may want to consider applying for a service dog sooner rather than later, experts say.

Service Banking DogsIt takes some time and energy to build a relationship with the dog. And every change you experience with ALS will also be something to which the service dog will have to adapt. For example, if you move from a walker to a wheel chair, the dog will have to understand and adjust.

Service dogs have full public access rights as granted by federal law; they can go everywhere you go.

Some agencies provide service dogs to qualified applicants at no cost, while others charge on a sliding scale based on your economic resources, from $1,000 to $3,000 or more, due to the training and care involved in preparing the animal for the role.

Several service dog organizations will place trained and capable canines with people who have ALS:

  • Canine Partners for Life: For more than 20 years, Canine Partners for Life (CPL) has been dedicated to training service dogs, home companion dogs, and residential companion dogs to assist people with a wide range of physical and cognitive disabilities. CPL uses a sliding scale based on income to determine the requested donation for each recipient, ranging from $1,000 to $3,000. No one is denied a canine partner because of their inability to donate the suggested amount, CPL says.
  • Paws with a Cause: For people with physical disabilities affecting one or more limbs. Their service dogs can pull a wheelchair, open doors, turn light switches on and off and pick up objects as small as a dime. They are trained in assisting people with ALS and are available at no cost to the client. However, it can take up to 24 months for a dog to become available.
  • Canine Assistants:  Applications can be downloaded through the website on the “Applying for a Canine Assistants” dog page. Once received, you will be contacted within three months to discuss the application. Getting a service dog can take one to two years. The waiting list is needs-based; those with the greatest need go to the top of the list. Each applicant is evaluated based on how much a dog could do to help him or her physically, emotionally and socially. They encourage those who need them to apply in spite of their long waiting list.
  • Guardian Angels: Created for the charitable purpose of rescuing, raising, training and then donating medical service/assistance dogs to mentally and/or physically impaired individuals to provide assistance, independence and improve the quality of life of both the recipient and the dog.

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Cool Gadgets: Smartphone-Powered Door Locks

By Barbara Bronson Gray, RN, MN

Knock, knock, who’s there? Sometimes it’s someone you’d like to let into your home – say a friend, family member or caregiver – but it’s tough to get to the door.  Perhaps you want a plumber, repair person or other helper to be able to come in when you’re out.  Or you would like to avoid having to fumble for your keys when you get home. Now there’s a gadget designed to make your life a little easier.

Smart LockIt’s called a “smart lock.” Visitors can use their smartphones to gain access to your home.  Many of these new lock systems allow you to send a “virtual key” to anyone you choose.  Most models retrofit to an existing deadbolt lock, but others require that your door’s lock be replaced.

There are several to choose from. Here are a few examples:

The Lockitron, goes right over the deadbolt on the inside of the door. It offers keyless entry; you lock and unlock your door with just a finger tap, and you can grant access to anyone you’d like using the app. It can also provide keyless entry with the iPhone 4S or 5. It costs $179.

Another, called the August smart lock, replaces the deadbolt, and it can be controlled with an iPhone, Android or web app. It can tell you when certain people enter or leave your home, and it can give out an unlimited number of digital keys to designated people. You can even stipulate what hours or days they may enter. The lock uses Bluetooth to know when a phone with a digital key is near, and unlocks automatically. The price is about $200. No wiring is needed; it uses standard batteries. You can still use your traditional key and can manually lock or unlock your door from the inside.

A third example, Goji Smart Lock, is the highest-tech of the bunch. It’s a circular disk that goes over your current lock, on the outside of your door. It has an LED screen that displays a personalized greeting to whomever is coming or going. And for extra security: it has a tiny camera that takes a picture of anyone who activates the lock. It provides full keyless entry, and you can choose to receive real-time app and text notifications about all the activity in and out of your home. All activity will be recorded and logged by the system, and it is available for review at any time via an app. The lock requires that the entire locking system be replaced. Available for $245 in March 2014, pre-orders are being taken now at Goji.

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Participate in these Educational Web Calls

Topic: Nutrition in ALS
Host: Care Services
Date: Monday, March 17, 2014
Time: 11:00 am, Pacific Daylight Time
Session number: 823 972 215
Session password: ATCmar2014
https://alsa.webex.com/alsa/k2/j.php?MTID=tf424c9061e3c80cd34de604bd4ca1a52

Topic: Telemedicine for ALS
Host: Research
Speaker: Ed Kasarskis, MD ALSA Certified Center Director
Wednesday, March 26, 2014
4 p.m. Eastern Time
http://www.alsa.org/research/research-webinars.html 

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Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com

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