224 posts in the category “ALS”

Dr. Rick Bedlack weighs in on telemedicine

Posted July 9th, 2018 by

Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains the basics of telemedicine, his “Tele-ALS” program and how telemedicine could improve patient clinical trial experiences in the future.

 

Telemedicine 101: How does it work?

“Telemedicine” connects patients and their doctors through secure video conferencing programs (similar to “FaceTime”). Both parties need to have a computer, tablet or smartphone, and a video conferencing program that has been approved for use by the doctor’s institution. I have been offering this type of care to patients with ALS for several years now, through separate “Tele-ALS” programs at the Durham VA Medical Center (VAMC) and Duke University.

The pros of telemedicine
  • No travel: The main benefit of Tele-ALS is that it allows patients with ALS who live in rural areas to continue to connect with their ALS specialist throughout their disease, even when travel becomes difficult or impossible.
  • Symptoms management: This connection facilitates expert identification and management of the many modifiable symptoms patients with ALS experience throughout their illness, such as drooling, thick secretions, excessive laughing and crying, cramps, spasticity, pain, insomnia, anxiety, depression, and constipation.
  • Tech troubleshooting: It also facilitates identification and triage of equipment problems such as malfunctions in speech generating devices or power wheelchairs.
  • Keeping patients in the know: I have personally found it to be very useful in keeping patients informed about exciting research and alternative options and in this manner helping them stay hopeful throughout their illness.
  • More accessible clinical trials: In the next year, I will pilot the first ever totally virtual ALS clinical trial. Instead of making “in person” study visits, this trial will conduct all required visits via Tele-ALS. This should make participation much simpler and more attractive for patients and families.
The cons

There are some down sides to Tele-ALS…

  • From a patient’s perspective, many have told me they miss coming in and meeting in person with all the members of my team. Not all patients have a computer, tablet or smartphone, or Internet access.
  • From my perspective, I miss not being able to perform a detailed neurological exam. Given this limitation, I would not offer Tele-ALS to a patient I had never seen before —only to those whom I have already examined and confirmed the diagnosis in person.
  • From an administrator’s perspective, there currently is no way to bill for a typical Tele-ALS visit. This is the main reason that more clinics are not offering it. We are only able to offer it at Duke because of a generous grant from the North Carolina Chapter of ALSA.
  • Finally, there is a silly rule that prevents us from crossing state lines with this care model. The VAMC has found a way around this rule and VA providers can now offer telemedicine, including Tele-ALS, “anywhere to anywhere.” Hopefully non-VA hospitals will figure out how to do this soon.
Going forward

As we work out some of the problems with billing and crossing state lines, I think telemedicine and especially Tele-ALS clinics are going to become much more common. If my upcoming virtual research study shows good compliance and adherence, Tele-ALS will be increasingly used in trials to minimize participant burdens as well.

For more information:

www.telehealth.va.gov

www.dukealsclinic.com/telemedicine

Have you tried telemedicine? Why or why not? Join PatientsLikeMe and share your experience with the community.

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Circulation issues & ALS

Posted July 3rd, 2018 by

Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways.

Why do some people with ALS experience poor circulation?

For many people living with ALS walking becomes difficult as their condition progresses. Lack of physical activity can make it difficult for the blood to reach the legs, feet, arms and hands, leading to poor circulation and swelling (some PatientsLikeMe members report swelling in their feet and hands). Swelling is also caused by dehydration, inflammation or consuming too much salt.

Some symptoms include:

  • Swelling or puffiness in legs, arms, hands or feet
  • Stretched and/or shiny skin
  • Skin that stays depressed after being pressed
How pALS manage:

If you’re experiencing any of the symptoms above, talk to your doctor. He or she may prescribe a diuretic (or water pills, to help rid your body of excess salt and water) but diuretics should be used with caution since many pALS are already dehydrated. Here are a few things some pALS are trying:

  • Electric blankets or hand warmers like the ones used for hunting
  • Ted Hose or compression socks (if you’re still walking) to prevent blood clots
  • Leg massage devices like this one or this one to get the blood flowing
  • Kathy Peters, Muscular Dystrophy Associations’s ALS Health Care Services Coordinator, warns that an ordinary reclining armchair can actually lead to more swelling. Instead, she recommends raising your feet (with a tilt-in-space wheelchair and hospital bed) so they’re on the same level or higher than your heart.
  • For more tips, check out this blog post about managing swollen feet.

How do you manage circulation issues? Any questions, thoughts or tips you’d like to share with the community? Join PatientsLikeMe and add your voice to the conversation.

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