[ 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 1 Recap ] Well, Hello!

Hello all, hopefully, you have been able to tune in and digest the information Daana & and I shared on the podcast. Let me first say THANK YOU! We appreciate the support from our listeners and are happy to provide you with a wide range amazing content.  Please note that neither one of us have experience in the podcast world so be gentle with us, we are bound to make mistakes as we move forward and perfect things. 🙂 Our goal is to keep you informed and engaged as we bring you future episodes.

Now that you have a bit more information, I wanted to kind of go back and provide you with a brief explanation on some of the words, or medical terminology that we mentioned.  I am sure that a few, if not all, of these words thrown at you, can be intimidating — especially for newly diagnosed individuals.

Let’s face it, Multiple Sclerosis is scary.  Particularly for people who have never had anything wrong with them other than a common cold.  Below, we are following up and providing you with brief definitions.  Note: please speak to a medical professional if you have any questions or concerns.  Our experiences allowed us to become quite familiar with many of the common terms and MS language.  Certainly, we welcome your questions, and hopefully, this will create an on-going dialogue with our subscribers and those following the blog.

Lherimette’s Sign: Symptoms of Lhermitte’s Sign. The main symptom ofLhermitte’s sign is an electric sensation that travels down your neck and back and also feels present in the arms, legs, fingers, and toes. The pain is usually strongest when you bend your neck forward. The shock-like feeling is often short and intermittent.  

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Spinal Tap/Lumbar Puncture: lumbar puncture (also called a spinal tap) is a procedure to collect and look at the fluid (cerebrospinal fluid, or CSF) surrounding the brain and spinal cord.

During a lumbar puncture, a needle is carefully inserted into the spinal canal low in the back (lumbar area). Samples of CSF are collected. The samples are studied for color, blood cell counts, protein, glucose, and other substances. Some of the sample may be put into a container with a growth substance. This is called a culture. If any bacteria or fungi grow in the culture, an infection may be present. The pressure of the CSF also is measured during the procedure.  Source: WebMD.com

Spasticity: is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.  Source: www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spasticity

MRI: Magnetic resonance imaging ( is a test that uses powerful magnets, radio waves, and a computer to make detailed pictures inside your body.  Source: WebMD.com

Evoked Potential: An evoked potential test measures the time it takes for nerves to respond to stimulation. The size of the response is also measured. Nerves from different areas of the body may be tested.

Types of responses are:

  • Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.
  • Auditory brain stem evoked response or potential (ABER or ABEP), which is when hearing is stimulated by listening to a test tone.
  • Somatosensory evoked response or potential (SSER or SSEP), which is when the nerves of the arms and legs are stimulated by an electrical pulse.

Each type of response is recorded from brain waves by using electrodes taped to the head. The visual evoked response (VER) is the most commonly used evoked potential test in the diagnosis of multiple sclerosis (MS).  Source: WebMD.com

Optic Neuritis: Optic neuritis is an inflammation that damages the optic nerve, a bundle of nerve fibers that transmits visual information from your eye to your brain. Pain and temporary vision loss in one eye are common symptoms of optic neuritis.

Optic neuritis is linked to multiple sclerosis (MS), a disease that causes inflammation and damage to nerves in your brain and spinal cord. Signs and symptoms of optic neuritis can be the first indication of multiple sclerosis, or they can occur later in the course of MS. Besides MS, optic neuritis can occur with other infections or immune diseases, such as lupus.  Source: mayoclinic.org

Myelin/Myelin Sheath: The insulating envelope of myelin that surrounds the core of a nerve fiber or axon and that facilitates the transmission of nerve impulses, formed from the cell membrane of the Schwann cell in the peripheral nervous system and from oligodendroglia cells. Also called medullary sheath.

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Source: WebMD

Sclerosis: The abnormal hardening of body tissue; excessive resistance to change

Central Nervous System (CNS): The complex of nerve tissues that controls the activities of the body. In vertebrates it comprises the brain and spinal cord.

DMDs: Disease-Modifying Drugs

  • IV steriods (solumedral): This medication is used to treat conditions such as arthritis, blood disorders, severe allergic reactions, certain cancers, eye conditions, skin/kidney/intestinal/lung diseases, and immune system disorders. Methylprednisolone may also be used with other medications in hormone disorders.  Source: WebMD.com
  • Avonex – AVONEX® (interferon beta-1a) is a once-a-week injectable treatment for relapsing multiple sclerosis (MS). It has been prescribed to over 455,000 people since its approval in 1996. AVONEX decreases the number of relapses, slows the progression of physical disability, and reduces brain lesions on magnetic resonance imaging (MRI).  Source: avonex.com
  • Betaseron – BETASERON® (interferon beta-1b) is a prescription medicine used to reduce the number of relapses in people with relapsing forms of multiple sclerosis (MS). This includes people who have had their first symptoms of multiple sclerosis and have an MRI consistent with multiple sclerosis. BETASERON will not cure MS but may decrease the number of flare-ups of the disease.
  • Copaxone – Glatiramer acetate is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This drug seems to block myelin-damaging T-cells through a mechanism that is not completely understood.
  • Glatiramer acetate is approved by the U.S. Food and Drug Administration (FDA) to reduce the frequency of relapses in patients with relapsing-remitting MS. It is also approved for use in individuals who have experienced a first clinical episode (clinically-isolated syndrome) and have MRI features that are consistent with multiple sclerosis.  Source: https://www.nationalmssociety.org/Treating-MS/Medications/Copaxone
  • Tysabri – TYSABRI® (natalizumab) is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS) to slow the worsening of symptoms common in people with MS and to decrease the number of flare-ups (relapses). TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML).  Source: tysabri.com
  • Lemtrada – LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.  Because of its risks, LEMTRADA®is generally for relapsing MS patients who have tried 2 or more MS medicines that didn’t work well enough.  Source: lemtrada.com

Please visit www.nationalmssociety.org to research further about Multiple Sclerosis and the various disease-modifying drugs.

I hope this helps and serves as a reference for you as we move further in future podcasts.  On our next episode, we will begin to discuss DMDs, complementary (medical/holistic) therapies and how far the treatment of MS has come in the past twenty years.

Until next time!

Dawn & Daana

Myelin & Melanin Podcast – Episode 1

It’s here! 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.

Here We Are

Thanks for stopping by our page. We welcome your comments and hope to provide you with informative and intriguing information about Multiple Sclerosis.

We are Daana Townsend and Dawn Morgan, two young women that met years ago, then quickly became friends. Our friendship flourished as we began to discuss living life with MS. Something continuously gnawed at us when we finally said, “let’s collaborate and share with the masses our knowledge.” It was important for us to begin discussing things from our perspective as well as experiences. Yes, we were both diagnosed with this monster of a disease. Daana, at age 23 (2003) and Dawn at age 25 (2000). Neither one of us chose to sit back and allow it to command the narrative of our life. Over the years we have taken the horns and now we are in control.

Please join us for our Myelin and Melanin podcast each week. Each episode will surely feed your mind and some may even touch your souls.

This is an exciting time for us and those with an unpredictable autoimmune illness like MS. We will have guest speakers from top medical professionals along with a variety of MS “experts.”

Happy listening! Glad to make your acquaintance!

Dawn & Daana
Myelin and Melanin