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“In Claire fashion”: Claire Wineland + organ donation with a health condition

Patient Experiences / By

Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition. […]

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Driving with Parkinson’s disease: Safety considerations + turning over the keys

3 Comments / Parkinson's Disease / By

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around. Considerations for driving with PD + 7 questions to ask yourself “You

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Getting back in the groove — 5 hacks + hints for routines that work

Conditions, Patient Experiences / By

Even if you haven’t been a student for several years, back-to-school season feels like the time to get back into a routine. What’s involved in a good routine? And what are the potential health perks of a basic regimen? See what the research shows, and join PatientsLikeMe to swap ideas with other members in this forum chat. How

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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

1 Comment / Conditions, Parkinson's Disease / By

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the

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Parkisnon's Speech

Let’s talk: Parkinson’s disease, speech changes + communication issues

Conditions, Parkinson's Disease, Patient Experiences / By

Parkinson’s disease can cause your voice to become raspy, quiet or unsteady, and motor symptoms can make writing and typing more difficult. Have you experienced communication issues like these? See what others have tried — from Lee Silverman Voice Treatment and voice-activated “smart” devices to (drumroll please…) singing classes. How PD can impact communication Parkinson’s

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Epidiolex: First FDA-approved drug made from cannabis component (CBD)

Epidiolex: First FDA-approved drug made from cannabis component (CBD)

1 Comment / Conditions, Epilepsy / By

In a historic move, the U.S. Food and Drug Administration (FDA) recently approved Epidiolex — an epilepsy medication made from purified cannabidiol (CBD), found in cannabis. Read all about it and what it could mean for the future of cannabis-based treatments. As background, see these other recent write-ups we’ve done on medical cannabis/marijuana and CBD. What is Epidiolex?

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Selfcare

It’s Self-Care Day! 7 “pillars” for taking care of you

Conditions, Patient Experiences / By

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring

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Cannabis for PD treatment? Member Ian says it’s something to shout about

3 Comments / Conditions, Parkinson's Disease, Patient Experiences / By

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my

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Meet Cris from the PatientsLikeMe Team of Advisors

8 Comments / ALS, Conditions, Patient Experiences / By

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C.,

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