12 posts from December, 2012

A Patient Poem for the Modern Age

Posted December 31st, 2012 by

Can you be friends with someone you’ve never met in person?

The members of our online health community – now 300, 000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.

As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”

Dedicated to Internet Friends

It’s strange to have a friend

that you have never hugged,

lightly touched their arm,

or looked into their eyes.

But you have touched their soul

felt their heart

been embraced by their warmth of being.

A friend unseen is not a friend untouched.

The eyes of the soul will gaze,

the heart will embrace

the image will stand tall

but only in a dream.

Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.


Use It or Lose It?

Posted December 27th, 2012 by

You’ve all heard the phrase “use it or lose it” before.  But should it be applied to patients with chronic, debilitating illnesses?  That’s an ongoing debate in the PatientsLikeMe forums.  Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum.

The Four Lobes of the Human Brain

On the one hand, there’s the argument that brain exercises such as word games can help you recover or improve cognitive skills.  For people who like the idea of challenging themselves to stay as sharp as possible, the phrase can be a motivating call-to-action.  Others, however, are bothered by the phrase as they feel it implies that cognitive decline is the patient’s fault.  Or that it makes it seem like “using” can stop the “losing,” which could be misleading in many cases.

Overall, this controversy is one that can help can help friends, family and the public at large be more sensitive to those with cognitive challenges due to their health condition.  “Brain fog” is a common symptom of numerous chronic diseases, including multiple sclerosis and fibromyalgia.  While there’s a natural instinct to encourage loved ones, it’s important to remember that every patient’s journey is an individual one, and no amount of “using it” can necessarily prevent cognitive symptoms.

What everyone seems to agree on, however, it that brain games and memory exercises certainly can’t hurt.  What do you think?  Join the discussion in our forum or share your thoughts in the comments section.