All About LEMTRADA: Reboot & Heal

Hello all!  Have you have had a chance to listen to episode 8?

Making the decision to choose the right therapy best suited for YOU is difficult.  Some days this thing called MS responds in such strange ways, it’s hard to tell what would be the best choice! This week we wanted to separate Lemtrada from the other therapies we’ve discussed and share our individual experiences.

Both of us have taken 2-3 therapies and we felt it was important to separate Lemtrada from the others.  One reason is that it’s considered a newer DMT used to treat MS (only FDA approved within the past 5-10years).  In fact, Daana was the first patient in Wisconsin to be infused with Lemtrada.   I believe I was the sixteenth patient from my neurologist’s office.  So, yes, this is certainly viewed as NEW.

The fears and anxiety of any treatment are normal, of course, but to include them in something that has a tremendous amount of preparation (before and after),  can leave you jittery.  Not mention the uniqueness of Lemtrada.

Remember, if you decide to make this therapy your choice to treat MS, ask your prescribing doctor questions!  Nothing is silly and it is better to ask before diving in head first.  Should you choose Lemtrada it would be helpful to:

  • Be your own advocate
  • Ask questions (I can’t stress this enough)
  • Do your research and decide if this is best for you
  • Talk to your support network
  • Join the Lemtrada Facebook group
  • Stay positive
  • Breathe, you will get through this
  • Follow your prescribing doctor’s  protocol
  • Call Genzyme and ask questions (they are the pharmaceutical company that will provide this therapy to your doctor)

Read more about Lemtrada on the Sanofi Genzyme website for more detailed information: https://www.lemtrada.com/

A few things I wanted to mention…if you do decide to have this infusion: be aware of any changes that may occur in your body. You are not paranoid or being a hypochondriac.  It is very important to note any change that is out of your normal way of feeling.  This is to ensure that your treatment plan runs as smoothly as possible.  The various delayed side effects are NOT something that happens to everyone.  Let me stress, it has happened to someone, therefore, it’s our understanding that pharmaceutical companies are required to report these occurrences.

*We are not doctors.  We’re just two gals that chose to take control over their MS and select a therapy that worked best for us!

Until next time.  Episode 9 will be here before you know it.  In the meantime, listen to 8 & catch up on any episodes you may have missed.

Find us on Facebook, Instagram, Twitter and now a new YouTube channel!

D & D

 

Episode 8 — LEMTRADA Lessons

Listen to Episode 8  of Myelin & Melanin!

Join us as we share our LEMTRADA stories. We reflect on life before, during and after LEMTRADA. Would we do it again?

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 7 Recap ] Excess Baggage: Traveling and Dating with MS

Pack your bags, the boarding pass is printed, sunglasses are on the table, shoes are at the front door, but WAIT!  I seem to have forgotten some things, like an extra pair of undergarments, clothes…OH and the fact that I just can’t pick up and run like OJ (the one that we thought was normal) in the airport.

Traveling has become daunting and honestly isn’t as fun as it used to be, said hundreds of MS patients. I know we laughed a bit in the podcast,  but jumping on a plane, train, or in a car requires far more planning and preparation when you have a disease that requires so much attention.

We wanted to share personal accounts about what travel means to us and shed some light on things to think about as you go into this Spring and Summer travel season. Below you can download a helpful checklist that may help as you pack for your travels. Yes!  We want to inundate you with tools that will help!

https://multiplesclerosis.net/living-with-ms/the-ultimate-travel-checklist-for-msers/

Love & Light

 

D & D

Episode 7 — Excess Baggage: Traveling and Dating with MS

Listen to Episode 7  of Myelin & Melanin!

Traveling and dating with MS is no walk in the park — it’s often fraught with anxiety and hassle. To put it simply, MS is excess baggage. Join us as we discuss some of our experiences and musings on traveling and dating with 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!

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.



It’s Easy to Go Fast

“It’s easy to go fast.” – Lindsey Vonn

I was watching the Oscars a few weeks ago, and one of the reporters on the red carpet asked Lindsey Vonn if it was easy being at the Oscars, walking the red carpet. She replied with a resounding “NO.” Then the reporter said, “You’re an Olympic athlete, I can’t believe you’d be nervous.” Lindsey so eloquently said, “Yes I am, it’s easy to go fast.” She then went on to say being there was a bit out of her comfort zone, albeit exciting. For those of you unfamiliar with Lindsey, she’s a 4-time World Cup champion and won an Olympic gold medal in 2010. Needless to say, she has dominated the ski slopes for quite some time.

Oddly, Lindsey’s response resonated with me and her words wouldn’t leave my mind. I kept hearing, “It’s easy to go fast.”

That absolutely rings true for a majority of us in the daily rat race. Even daylight savings has to get in and push ahead on the fast train. But my question is “why”? Why try to rush through daily life? Shouldn’t we be taking a pause without feeling guilty? Aren’t we more productive and less likely to make errors when we take our time?

How does this relate to people with MS? We know that mobility can pose a challenge to those that have gait issues. Not to mention spasticity, which makes muscles feel like 1,000-pound weights at times. Becoming too tired as you rush through your day can pose problems and possibly spin you into a whirlwind — or even worse, lead you to symptoms going awry.

I think in order to feel better about checking things off of your list, it is important to remember to rest.  SLOW DOWN.   I think you may find interest in how many view life in the slow lane. The article below goes into more explanation on the importance of slowing, resting and taking breaks. “It’s easy to go fast”,  isn’t it?

Check this out:

Importance of Rest with Multiple Sclerosis | DemosHealth

What are some things that you do to slow down? 

Tune in Friday to our next podcast — Episode 7 — Excess Baggage: Traveling, Dating and MS.

Have a great day!

 

[ 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.