[ 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!

Episode 6 — Accessibility, Accommodations & Frustrations

Listen to Episode 6 of Myelin & Melanin!

Join us as we address some of the everyday challenges and issues that people with MS and other disabilities face. We’ll touch on the ADA, accessibility, reasonable accommodations, FRUSTRATIONS, and other issues.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on! We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.


[ Episode 5 Recap ] It’s Not all in My Head

Let’s be honest being told that something is “wrong” with you and that you have been diagnosed with an illness with no known cure is completely mind-blowing.  We can’t speak for everyone but it has to be a shock to the system.  It seems as if a diagnosis can lead to a plethora of emotions, depression & anxiety are two which certainly stand out.

Depression can be difficult to manage on your own and when things go awry you may not know where to start to get help.  MS is hard.  There isn’t an easier way to say it.  The unpredictability of this illness can lead someone into a whirlwind of emotions.

According to the MS Society depression is one of the most common symptoms with people that have Multiple Sclerosis.  Of course, we all have highs & lows in life and I think what makes MS patients experience anxiety and depression is the unpredictability of the illness.  We may go to bed feeling strongwith the ability to move about with ease, then wake up in the morning not being able to lift your legs or even see.  Needless to say, it’s scary!

No, it’s NOT all in my head — is this really happening to me? A question that so many of us ask ourselves. How everyone manages their illness after the diagnosis is completely different.   You’re diagnosed, now what?  The control you thought you once had over your life is now in the hands of a disease.  That lack of control we mentioned in the podcast, is the green light for anxiety.

Anxiety doesn’t care what time of day that it decides to disrupt your life.  It creeps in — actually, it attacks your mind with a vengeance.  We may be experiencing numbness is our legs and feet then all of a sudden lose the ability to walk which makes it easy to fall into the web of anxiety.  Is this the start of another exacerbation?  Is something else wrong with me besides MS?  The “complex unpredictability”  nature of this disease can open a window to all types of emotions.  It’s important to listen to your body and talk to your doctor.  Remember that you are not alone and you aren’t exaggerating how you feel.  This is real and an adjustment to accepting a new normal.

Until next time…Love & Light!

D & D

 

Episode 5 — It’s Not All In My Head

Listen to Episode 5 of Myelin & Melanin!

You mean to tell me that I have to start worrying about my mental state in addition to my physical body? You’re kidding me, right?

This week, we will be talking about the realities of depression and anxiety, and how they relate to our MS.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

* Please forgive the sound quality of this podcast; we had some equipment difficulties.

[ Episode 4 Recap ] Energy Vampires & Protecting Your Energy

Have you ever been in someone’s presence, be it online or in close proximity, and start to feel uneasy?  You may start to notice tension throughout your body, your stomach may be in knots, your breathing may become erratic.  Well, if you notice those small but subtle changes, you have been bitten by an Energy Vampire!  Beware…

According to Dr. Sophie Henshaw in How to Avoid Being Drained By Energy Vampires, “Energy vampires are emotionally immature individuals who have the sense that the whole world revolves around them. They are almost incapable of seeing things from another person’s perspective. They often lack empathy. They believe that they must take everything they can get from others and that giving anything will deprive them of essential resources.”

As we’ve discussed in previous episodes, stress and MS are a dangerous combination. Imagine the stress that energy vampires wreak on one’s system! When you’re dealing with MS, you’re already operating with a deficit — dealing with someone who drains you, instead of refilling your cup, can be damaging to your spirit (and manifest in your body). Take care to avoid them! Or, at the very least, be aware of this type of person (or situation) and keep your distance.

It’s important to recognize when your personal space has been invaded, because your body will tell you when toxic energy is unwanted.  In the podcast, we talked about a couple of techniques to help keep the negativity at bay.  Meditation and body scanning are always easy ways to escape the “bite.”  If you’re curious about how to incorporate relaxing or energy blocking techniques take a look at the link below.

 

We want Myelin and Melanin to be a place where you find information that is beneficial to your life.  Remember, avoid the bites and stings that energy vampires can bring!

Love, light & awareness! 🙂

D & D

 

Episode 4 — Energy Vampires & Protecting Your Energy

Listen to Episode 4 of Myelin & Melanin!

Have you ever been in someone’s presence, be it online or in close proximity, and start to feel uneasy?  You may start to notice tension throughout your body, your stomach may be in knots, your breathing may become erratic.  Well, if you notice those small but subtle changes, you have been bitten by an Energy Vampire!  Beware…

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on.

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

[ Episode 3 Recap ] Treating the Whole Person

Hello followers!  Myelin and Melanin is well on the way to continue bringing you exciting and informative episodes.  Last week we were excited to have Dr. Kevin Flythe as our guest.  He has been a doctor of chiropractic care for over 20 years and was able to step away from his busy practice to discuss the benefits of this type of complementary medicine.

Alternative medicine has long been a topic amongst many of us in the MS world. Quite often we don’t know where to begin or how any of this works with our DMDs. Fortunately, over the past decade, there have been numerous studies and articles written about the proven benefits of alternative or complementary medicine.

Over the past few years, many neurologists have begun to encourage their patients to include some of these therapies to help manage symptoms.  Massage, Tai Chi, and acupuncture to name a few.  Read below to find out what others in the medical community have said:

Love and light,

D & D

Episode 3 — Treating the Whole Person

Listen to Episode 3 of Myelin & Melanin! Are you familiar with the various types of complementary (alternative) medicine that benefit MS patients? We have a guest, Dr. Kevin Flythe, who is a doctor of chiropractic care in Atlanta Georgia, discussing the benefits of chiropractic care and various complements to DMDs.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on.

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Busy Recording!

Busy recording our next episode on chiropractic care as holistic, complimentary MS therapy — with a special guest!

Tune in on Friday. Listen, stream and follow us on iTunes and SoundCloud (the link can be found here).

“The goal of chiropractic therapy is to restore normal function to joints and their supporting structure, especially the vertebral column and pelvis. Following a simple examination and — often — radiological evaluation, the chiropractic practitioner applies precise adjustment to the vertebral column to bring structures back into alignment. This realignment is supposed to eliminate the irritation to the nerves and restore normal function.” [ https://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Chiropractic-Therapy ]

Care for “the whole person” is key.

Love & Light.

[ Episode 2 Recap ] Could You Live Like a Minimalist?

The Netflix documentary that Dawn mentioned in Episode 2

We have all been bombarded with articles, news stories and pretty entertaining TV shows about the “minimalist life.”  Would you pick up and leave it all behind, sell your items on eBay or some other selling site?  Getting rid of all of your possessions, keeping only the most basic and necessary things?  Are we mindful about what we purchase and bring into our homes?

In countries like Japan where space is quite the commodity, they seem to have, in my opinion, been the pioneers of living simply.  Let’s go further into this concept that the Eastern world has adopted and infused into their daily life, which has now become part of their culture.

Ma is the Japanese word for negative space or roughly translated into gap space.  I suppose an easier way to look at this concept would be emptiness or a “less is more” attitude.   Take a look at this article and read how the Eastern world encapsulates the idea of living a minimalistic life.

When Less is More: Concept of Japanese “MA”

Japanese Kanji for "MA"
The Japanese Kanji character for MA

Where there is clutter, even valuable things lose their value. Where there is too much, nothing stands out.

The essence of Japanese aesthetic is a concept called ‘MA’ (pronounced “maah”) — the pure, and indeed essential, void between all “things.”

A total lack of clutter, MA is like a holder within which things can exist, stand out and have meaning.

MA is the emptiness full of possibilities, like a promise yet to be fulfilled.

I don’t think having a minimalist lifestyle is an esoteric concept, or something “new age.”  Isn’t it just another way of living? In fact, it all begins with an idea.   So the question I will leave you with is can you have minimalism without mindfulness?

[ The vlog Daana mentioned in Episode 2 ]

Until next time!

Love and light.