3 posts tagged “health management”

Dr. Rick Bedlack weighs in on telemedicine

Posted 3 months ago 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.
telemedicine

telemedicine

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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Managing MS fatigue & guilt

Posted 6 months ago by

Ever feel guilty about how your MS symptoms impact your life or the people around you? Like you can’t “pull your weight” or that people don’t understand that needing to rest is a real symptom and not laziness? The PatientsLikeMe community can relate — there are nearly 26,000 members with MS reporting fatigue as a symptom, and over 800 forum threads on fatigue and guilt.

Here’s what some members are sharing about their fatigue guilt:

Missing out on family time

“I slept all afternoon and missed a beautiful afternoon with my wife and daughter. To make it up to my wife when I woke up I decided to tackle the kitchen and the laundry. I managed the kitchen but had to give up halfway into the laundry. I hate missing time with my family and not pulling my weight.”

Worrying about the future

“…my issues come when I feel guilt about the future, I worry about my kids having to take care of a sick mother…”

Breaking plans

“When I feel the most guilty is when I’m having a good day and I promise to do something for someone, and the day comes and I can’t do it cause I’m too tired or my body hurts. That is when I feel the worst. You see, breaking a promise to myself doesn’t hurt as much as having to explain why I can’t do something I said I would.”

How members are managing:

Celebrating the small things

“I’m trying not to beat myself up now its to the point where I feel good if I can go down in the basement and carry clothes up or I feel good if I get a home cooked meal finished and remembered the veggies in the microwave sort of thing I am learning to let go of all the guilt and celebrate the things I can do its so much less tiring that way.”

Accepting your “new normal”

“I have accepted today that I have limits and I am not responsible for them.But I am responsible for looking after myself so that I don’t cause things to get worse and my limits smaller…Since I have stopped trying to act like I am normal and not sick, I am happier, relaxed and much easier to get along with than before.”

Taking action online

“My guilt is alleviated because there are so many things I can do online, from signing petitions to send to congress to helping tutor college students – use your computer to make yourself feel that you are still useful at something in life.”

Managing fatigue

Knowing how to manage fatigue can help too. Check out these tips from one woman living with MS and see how members of the community are treating fatigue.

Do you feel guilty about how fatigue and other symptoms of your MS impact your life? Join the PatientsLikeMe community and share how you cope.

 

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