4 posts tagged “Parkinson’s Community”

Health news: What’s making headlines in June

Posted June 27th, 2018 by

In case you missed it, check out this round up of some of the stories making headlines in June…

 

Parkinson’s disease:
  • Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in.
  • Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study.
Lupus:
  • How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A.
Lung cancer:
  • Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for many patients with advanced non-small cell lung cancer (NSCLC) — even those with low levels of the PD-L1 gene mutation. Tell me more.

 

MS:
  • VETS Act expands access to telehealth: Late last month, Congress passed the VETS Act, expanding access to telehealth for more than 20 million veterans, including 30,000 living with MS. Get the full story.
  • Now enrolling: Nationwide clinical trial: Researchers at John’s Hopkins University are seeking newly diagnosed or untreated patients living with relapsing-remitting MS (RRMS) to participate in a study to help inform treatment decisions. Learn more.

 

 

Mental Health:
  • Practices for overcoming trauma: Results from a new study found that women who combined meditation with aerobic exercise had far fewer trauma-related thoughts, and saw an uptick in feelings of self worth. Get the full story
  • When antidepressants won’t work: “I knew it wasn’t going to be a magical Cinderella transformation, but I definitely feel like a newer person.” Read one man’s experience with Transcranial Magnetic Stimulation (TMS) after first-line treatments didn’t work. More info.

 

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Not Recognizing the “New Me”

Posted December 10th, 2012 by

Are You Resistant to the Idea of a Wheelchair?

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.

  • Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
  • Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
  • Have you worried that becoming someone who receives help is going to change your lifelong identity?

If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.