855 posts in the category “Conditions”

Parkinson’s disease and hyperhidrosis: Sweat struggles + solutions

Posted July 11th, 2018 by

PatientsLikeMe members with Parkinson’s disease (PD) have talked a lot about excessive sweating (aka hyperhidrosis) and heat intolerance with Parkinson’s disease. It can be a “stinker,” as one blogger who has PD recently shared in Parkinson’s News Today.

Can you relate? Read on for more information and some possible adjustments or life hacks that others have tried.

One study found that over 60% of patients with PD experience sweating disturbances like hyperhidrosis (over-secretion of sweat) or hypohydrosis (under-secretion of sweat, which is less common).

The Parkinson’s Foundation and Parkinson’s Victoria cover these issues in their guides to skin, scalp and sweat changes related to PD. In addition to hyperhidrosis, many people with PD experience an extra-oily scalp (or other parts of the body), drenching night sweats and general difficulty with temperature control.

Some of these problems may stem from PD itself, which affects some of the body’s automatic functions, such as blood pressure and temperature regulation.

Research has shown that hyperhidrosis also seems to occur along with “off” times in levodopa treatment and with dyskinesia (jerky movements without tremors).

Possible solutions and hacks

Maria De Leon, M.D., a neurologist with young onset PD, writes on her blog that she understands firsthand the impact that sweating (and related body odor) issues can have on people’s lives. A few things you can try? Dr. De Leon suggests:

  • Talking with your doctor about possible levodopa treatment adjustments and even other treatments that may help, such as propranolol (see what PatientsLikeMe members with PD report about propranolol)
  • Taking lukewarm showers or baths
  • Wearing lightweight cotton clothes
  • Drinking extra fluids, especially water
  • Using antibacterial soap to help prevent body odor, and thorough towel drying before getting dressed
  • Trying clinical or “industrial” strength antiperspirant/deodorants. Dr. De Leon says these “work best if you apply at night before bed time not after showering or will wash off; it takes 6 to 8 hours for antiperspirants to enter sweat ducts and properly clog pores plus the body is cooler at night. But do reapply at least once during the day.”

Elsewhere online, people with hyperhidrosis recommend wearing solid dark colors or clothes with prints to help camouflage sweat marks, using underarm sweat pads, wearing leather shoes to help stave off odor, and bringing a small towel and a spare shirt just in case. A New York Magazine writer with hyperhidrosis (but not PD) rounded up his favorite products for over-perspiration.

Talk with your doctor about any skin- or sweat-related issues you’re experiencing. Dr. De Leon says that anxiety, thyroid problems or other health conditions can also cause or add to excessive sweating.

Join PatientsLikeMe to see what the community says about excessive sweating and heat intolerance with PD, or add a comment below based on your own experiences.

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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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