Episode 30 | Ever Cloudy — Celebrities, Mixed Messages and MS

Tune in to Episode 30 of the Myelin and Melanin podcast!

Art Alexakis, from the band Everclear. Image from Everclear website

This week, another celebrity publicly disclosed an MS diagnosis. Art Alexakis, from the band Everclear, announced his recent MS diagnosis on Instagram and in an open letter to his fans on the band’s website. Almost immediately, there were people (namely MSers) who expressed confusion about the information he touted about his “prognosis” (in and of itself, a precarious word to use to describe MS).

On one of the last days of MS Awareness Month, join us as we discuss the importance of celebrities (and perhaps their neurologists) using their platforms to disseminate clear, honest and realistic information about multiple sclerosis. The amount of conflicting information often spread about the disease makes it confusing, and creates unrealistic expectations about this unrelenting disease.

Check us out, stream and subscribe to the podcast on Apple Podcasts, Spotify, Google Play, Stitcher or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on! You can also find us on YouTube.

[ Episode 16 Recap ] Voices & Choices: Self Advocacy and MS

The summer is starting to wind down!

It’s hard to believe that the regular fall routines are almost underway.   For many of us, this is a time to schedule doctor’s appointments and make preparations for the next major holiday.

Hopefully, you tuned in to Episode 16 as we discussed Self-Advocacy.  The prior episode, our focus was on self-care and ways to incorporate “taking care of you,” into your daily life.  With all that gets piled onto our plates, it’s really important to look at yourself and quite honestly, take a personal inventory.

Today we see just about everywhere #hashtags or “quotes” reminding us to take care of ourselves, and “place your mask on first.”  In our podcast, we brought this topic to the forefront. It walks hand in hand with self-care; self-advocacy.  Being an advocate doesn’t mean you have to be loud or cause some sort of conundrum with family friends, caregivers, or physicians.  According to the definition, advocacy means the act of pleading for or supporting.  In our opinion, the best person to advocate for yourself is YOU, especially when managing a disease like Multiple Sclerosis.  Below we compiled a list of ways to speak up for yourself and allow your voice to be heard.  Take a look to see what can be incorporated into your life.

Number two says, my body my choice for a reason.  Sometimes, MS patients and people in the disabled community are faced with having to voice their concerns about how their personal space is violated.  We mentioned the article in the podcast and here it is for you to read.

Until next time!  Be sure to tune in this weekend to episode 17, this one will be one you don’t want to miss!

Happy self-advocating!

D & D

[ Episode 6 Recap ] Accessibility, Accommodations & Frustrations

There are a number of steps we take throughout the day, some are physical and others are mental.  I think when you are faced with an illness such as MS, your entire world can shift.

So let’s talk about accessibility and some of the things that people with disabilities think aboutReally, it is constantly in our brains — is it accessible? For many people, it is easy to go through an entire day without thinking about the ease of getting into a building: is there an elevator, are the lavatories in close proximity to where I am seated? And on and on. For us, it’s not that simple.

How is accessibility defined? According to the dictionary, accessibility refers to the design of products, devices, services, or environments for people with disabilities. The concept of accessible design ensures both direct access (i.e. unassisted) and indirect access meaning compatibility with a person’s assistive technology (ie, computer screen, for a visually impaired individual.

The accessibility challenge is not something new to the disability community.  We have been fighting for equity in the workforce and outside for over twenty-five years.

Over the years, many have fought and won the disability discrimination battle.  Even in 2018, we continue to place on our boxing gloves.  As Daana mentioned (and I thought I would reiterate), there are things being slipped into our legal system that have the potential to be quite detrimental to our community.

Be vigilant and aware of what is taking place, because we are stronger together when we increase our awareness and advocacy.

Interesting information from the National MS Society about the ADA:

Talk to you soon and be sure to listen to our upcoming podcast!

Love and Light!