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ALS Registry

October 2013


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

The Value of Having a Neurologist Who Specializes in ALS

Dr Kasarskis

Dr. Kasarskis

Q: My neurologist has told me that he has had very little experience with people with ALS. I live four hours from the nearest big city. What am I missing by not having a physician with specific expertise in my disease?

A: There are, in a sense, two separate phases of ALS: the diagnostic period of determining whether you do indeed have the disease and the time after diagnosis that involves managing issues and challenges that will be coming in the future. Working with an ALS expert is critical in both phases.

We have no definitive way of making the diagnosis of ALS; there is no blood test, spinal fluid test or imaging test that can make the determination. (People are working hard to develop such a test, but there is nothing available yet.)

So in order to make the diagnosis, a physician needs to see a solid history of progressive weakness, but also has to rule out other causes for your symptoms, including metabolic issues, various nerve or muscle diseases, or structural problems within the spinal column (such as spinal stenosis).  This may explain the extensive testing that likely was your experience.  Getting a second opinion is an important part of that process.

A second opinion is also a good investment in your peace of mind. It puts you on the right path for appropriate treatment and support.  Before the diagnosis is determined, there is a certain amount of uncertainty that is really nerve wracking. Yet I’ve found that people, once they know their diagnosis is accurate, can usually roll up their sleeves and get to work learning about ALS and the challenges that lie ahead.  They are able to adapt to a pro-active approach to managing their illness.

Once you are certain you have ALS, it’s important to find a team of people who can help you manage the disease and anticipate potential problems before they arise. The best bet is to go to a dedicated ALS clinic for your care.  Your local neurologist is undoubtedly a good physician, but it will be very difficult for him or her to assemble the full team that will be needed for your care in a timely fashion.

At an ALS clinic, you’ll get evaluated by a neurologist who is an expert in ALS, and you will work with a multi-disciplinary staff that includes a physical therapist, respiratory therapist, occupational therapist, registered nurse, nutritionist, and others – all experts in managing ALS. The team is also trained to help family caregivers learn specific things they can do to best support the person with ALS. An expert team anticipates what the next challenges will be in the next three, six or nine months and can help problem-solve your particular situation.

I would encourage others who, like you, live hours from an ALS clinic to find a way to visit such a resource regularly, say every three months.  Many of our patients make the drive the day before their appointment, stay overnight in a hotel, go to the clinic the next day, and then drive home. Sometimes clinics can arrange alternate visits with your local neurologist, who can confer with the ALS clinic neurologist as needed.

The way I figure it, every three months you would invest about 12 hours of travel and clinic time for the benefit of your health. Sure, the effort involves inconvenience and expense. Travel can be arduous as ALS progresses. But a commitment of 12 hours isn’t that great for an investment in maintaining your ability to function.  I would encourage you to literally “go the extra mile” to get the most informed, experienced care you possibly can, in concert with your local neurologist and primary care physician.

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.

If you would like to submit questions for a future Q & A, please send your questions to  Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. 


Fiscal Fitness: Finding Low Cost Sources of Equipment

By Barbara Bronson Gray, RN, MN

One of the unique challenges of dealing with ALS is that unlike many other conditions, your needs typically change over time. When it Finding Low Cost of equip.comes to buying equipment, advancing to the next level of care can be expensive.

However, experts provide suggestions on how to make sure you get the equipment that is right for you and offer ideas about how to find low or no-cost sources for what you need.

Most equipment will be prescribed for you by physicians and therapists, who should provide detailed guidance about what type of device would be best for you. Durable medical equipment, which includes wheelchairs and ventilator-support devices, are usually covered by insurance and Medicare, sometimes requiring that the patient pay a deductible.

Talk with your neurologist and a physical or respiratory therapist before purchasing or getting any mobility or breathing equipment on your own. You want to be sure that the device will fit your particular needs, not just now, but ideally in the months ahead.

To get free, discounted or loaned equipment:

  • Talk with your closest ALS Association chapter to see if they have loan equipment available. Many chapters maintain an inventory of equipment for people with ALS in their communities.
  • Talk with the device manufacturer to see if the company offers a discount or special price program for people with ALS or for those with financial need.
  • Look for equipment that is for sale on Craig’s List and eBay and check out the online bulletin boards and websites of places like rehabilitation hospitals, assisted living centers, and local disability organizations.
  • Secondhand stores, nonprofit thrift stores, church thrift shops and even pawn shops sometimes have basic equipment such as hospital beds, walkers, commodes, canes and wheelchairs.
  • Check out the National Mobility Equipment Dealers Association website to learn more about acquiring wheelchair-accessible vehicles.


Getting to Yes:
A Challenge for Both People with ALS and Their Caregivers

By Barbara Bronson Gray, RN, MN

From a young age, we’re taught it’s better to give than to receive. Many of us have spent time volunteering for important causes, raising a family, and being there for friends when they needed help. It’s said that doing things for others is essential to finding meaning in life, and we frequently take that to heart.

So it’s not surprising that when the tables are turned, and we become the ones who need a hand, it’s difficult to learn to say, deep down within ourselves, “Yes, thank you, I would really appreciate that assistance.”

This is true for people with ALS and also for their caregivers. Experts say there are a host of reasons why many people resist offers of Accepting Helphelp that are extended to them. We hate losing our independence, and sometimes feel guilty, sad, depressed, awkward, ashamed, embarrassed and even angry that we can no longer do simple, everyday things ourselves. It’s normal to grieve the loss of our independence.

For those with ALS, it is frequently very hard to have to rely on others for help executing normal tasks of everyday life. For caregivers, it can be tough to need help running a household and supporting the person they love. No matter what perspective you may have, know that most people naturally believe we should be able to handle it all ourselves.

Some experts suggest -- whether you’re a person with ALS or a caregiver -- that you need to develop a philosophy about receiving help. Everyone will have a different approach, but you may come to tell yourself things like, “I’m grateful to have the support of family, friends and neighbors and I can accept my need for help,” or “I hate the idea of needing help, but I am coming to understand that I must be open to assistance, or “I can handle doing these specific tasks for myself, but I will need help doing these other things, for sure.”

It’s also helpful to feel comfortable expressing your discomfort, no matter whether you’re the person with ALS or the caregiver. You can say, for example, “You know, it’s really hard for me to need to ask you for this, but could you please ….”  Talking about the discomfort you feel relying on others to help you manage your day-to-day life is likely to help you deal with those thoughts and frustrations. It may also help you better understand and be sensitive to the scores of personal challenges you are each experiencing.

And still, it’s important to continue to seek the things you enjoy doing, whether it’s sitting outside and watching the birds or the sunset, listening to music, watching your favorite college team playing Saturday afternoon football, or having a good laugh at something really funny. Without ensuring your needs for the simple joys of life are met, it would be hard for anyone to cope with great challenges.

Getting to yes -- feeling comfortable with the need to have people helping and supporting you as you cope with the unique challenges of ALS -- is critical. Coming to understand that it is natural to resist help, that you can freely express your reluctance to lean on others, and that you can learn to effectively cope with the challenges are all steps that are likely to enhance your comfort and reduce the inherent tension of relying on others.


Your Privacy:
What You Should Know About Health Social Networking Sites

By Barbara Bronson Gray, RN, MN

Social MediaAlmost no area of modern life has been unaffected by the advent of social media, and health is no different.

There are many health social networking sites designed to meet the needs of people with a wide range of conditions, including ALS. People connect with each other to discuss common problems and experiences, and share relevant health data. The concept is simple: improve health outcomes by bringing together the wisdom of many.

For example, MedHelp is a social network that also provides tracking tools for pain, weight and other chronic conditions. CureTogether  helps people track and compare health data; DailyStrength allows caregivers and patients to give and get support; and FacetoFaceHealth helps match people with similar diagnoses.  PatientsLikeMe includes more than 2,000 conditions, and helps participants learn from each other and track health data to contribute to research.

But there are concerns about health social networking sites. A September 2013 article in the Journal of the American Medical Informatics Association highlights issues associated with the sites. In short, because users tend to share large amounts of health data, participation can risk opening the door to misuse of personal information, according to the researchers.

The article highlights three types of risks associated with health social networking sites:

  • The site may hold a vast number of users’ profiles and keep them permanently. The authors note that for many people, privacy takes a back seat to the hope that participating will help them with their health condition. Some reveal their health data in the hope that they will somehow improve things for others. Health professionals also often post sensitive information on many of the sites. Once users share data with the site, they usually have no control over how long the data will be stored or how it may be potentially used.
  • Information or other content provided by users may be revealed to unintended audiences. Since anyone can register on these websites, anyone can view the content. Some may disclose users’ personal information to business partners and third parties. Thus marketers, employers, insurers and others may have access to personal data on the sites.
  • The aggregated health data can be misused for a variety of non-medical purposes. For example, some health social networking sites are commercial companies that harvest health data for business-related purposes. They may release data to physicians, pharmaceutical and medical device firms, researchers and nonprofit organizations. Such data can be “mined” to create information about individuals, the researchers say. That information could be an attractive target for identity thieves and hackers.

The researchers warn that the more data you share on health social networking sites, the greater your risk. The experts say you should share the minimum amount of personal data to accomplish what you are on the site to do.  Don’t assume that just because the site has a privacy policy, your health data will be protected.  Understand the privacy settings available and use the maximum level of privacy offered.


Don’t Miss Our October Webinars and Calls

Research Updates

Hosted and organized by The ALS Association’s Research Department

Date: Monday, October 28, 2013
Time: 12:00 Pacific Time
Speaker: Guy Rouleau, MD, PhD, Montreal Neurological Institute and Hospital.


Join this free online session offered by The ALS Association’s Care Services:

Topic: Equipment Designed for Safe Transfers and Effective Mobility
Date: Monday, October 21, 2013
Time: 11:00 am, Pacific Daylight Time Session number:
Session number: 824 394 547
Session password: Atcalloct2013
Call-in toll-free number (US/Canada): (877) 668-4490











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