My Multiple Sclerosis Life is Filled with Seasons of Change

MS changes

By Penelope Conway

This morning I made an absolute mess of things. I was making my morning coffee, and for the umpteenth time, I spilled the coffee grounds all over the floor and myself because my hands fumbled and wouldn’t cooperate. I cleaned myself up and turned the coffee pot on so it could brew me a cup, but left the mess all over the floor for later.

As I’m writing this, I’m sipping on a freshly brewed cup of coffee while sitting in my bed knowing that there’s a mess in the kitchen waiting for me to tackle, but do you know what? Continue reading

Share

Life Goals: Checking in When the Seasons Change

By Stacie Prada

When summer turns to fall, a sense of routine and normalcy seems to return to my life. Kids are back in school, my coworkers and I are done with big vacations, and we’re all ready to get back to work. This year it occurred to me to start reflecting on this year and planning for next year earlier than usual. I think this might be Continue reading

Share

School is in the Air

By Lauren Kovacs

Here it comes! Cooler weather (hopefully) and the munchkins go back to school, as fall arrives. Smell the crispy leaves (or not) and hear the silence. It also means for many of us, no help.

Most of us are masters at adaptation. Embrace the Continue reading

Share

It’s Okay to talk to Your Doctor About the Tough Things

Talking to Your Doctor About the Tough ThingsBy Penelope Conway

Doctors are smart. They have gone through years and years of study, had hands on experience, seen the good bad and ugly, and want the best for their patients. We’ve been told over the years to trust them because they know what they’re doing, but in today’s day and time, we have access to vast amounts of information that many times even doctors haven’t researched for themselves which gives us more choices and options in how we manage our own health.

My first neurologist, the one that diagnosed me after MRI’s and a spinal tap, wasn’t Continue reading

Share

Dissolution Confusion…

By Scott Cremeans

Some of my doctors have been confusing, to say the least. My recent doctor appointment was one of those perfectly perplexing pop-ins. When I recently saw this new neurologist things started off as most initial doctor visits do. It was just like every appointment for a new doctor that most of us have experienced. They cut off the blood circulation in your arm while testing your blood pressure. Then a thermometer is slipped under your tongue, and a pulse oximeter is simultaneously popped onto your finger.

They check where you are on the depression scale by asking Continue reading

Share

Talking with Healthcare Professionals About Nutrition

By Alene Brennan

“Eat whatever you want, it’s not going to make a difference.”

I had heard the line from doctors before but this time it was different. This time there was so much more on the line.

I had just heard the words “you have multiple sclerosis.”

I needed something within my control to begin to reclaim my health.

As a nutrition coach, food was the obvious choice.

It was also the obvious choice because Dr. Terry Wahls – a physician diagnosed with progressive MS – created a nutrition protocol that was reversing the effects of the disease for her and many participants in her clinical trial.

Why then was I being discouraged to improve the quality of foods on my plate by the doctor who’s supposed to support me in feeling my best? It didn’t make sense and if this was his message to me, it meant that others were likely being told the same thing.

I pursued the conversation and my doctor began to pack peddle saying that nutrition wasn’t going to hurt me but I just wasn’t going to cure MS.

This is a conversation that many of us having with our medical care team and I’ve found it incredibly important to approach the conversation in the right way.

The following are strategies in talking to healthcare professionals that I’ve found to be helpful and share with many of my nutrition clients to do the same.

Do your homework.

Before you go to your appointment, do some research to understand the various nutritional approaches that may be helpful for your diagnosis.You don’t have to look up scientific studies – although if you have access to that, it’ll be a tremendous help – but simply be informed about how others are finding success through dietary changes.

Doing your homework can consist of:

  • Reading a book
  • Listening to a podcast
  • Talking with respected friends in the industry
  • Reviewing credible websites/blogs

You’ll likely discover that there are two main dietary approaches being studied for MS – the Swank diet (low-fat, minimal animal products) and the Wahls Protocol (organized paleo approach). This background enables you to have a more specific and productive conversation with your healthcare professionals now.

Ask the right questions

This step is key!

“What do you think about nutrition?” is way too broad of a question for even the savviest of physicians to answer. It’s also the type of question that will deliver the response that I received in that nutrition doesn’t make a difference.

Consider the outcome you want to achieve and ask targeted questions accordingly.

Do you want to try a nutrition plan before starting medication?
Ask: “I’m seeing a lot of information on the benefits of nutrition in managing MS, based on my diagnosis and recent test results, would you be agreeable to me starting with this plan for three to six months before starting on a medication?”

Do you want to ensure your desire nutrition plan doesn’t conflict with your medical care?
Ask: “I’d like to follow this nutrition plan to help reduce my symptoms – fatigue, brain fog, etc. – given my overall health and medical plan, do you have any concerns or foresee any contraindications?”

These questions are far more specific and will yield clearer direction on next steps for you. It also lets your healthcare professionals know that you’re taking it seriously.

Keep in mind, medical school still doesn’t include much beyond one or two classes on nutrition. They’re trained in hard science and using standardized medications to treat patients. We cannot always fault them for not speaking to something they’re not trained in.

Understand the context of the conversation and ask questions accordingly.

Decide what resonates best with you

Continue to gather information until you feel confident in a plan that resonates best with you.

  • Get a second opinion
  • Continue your research
  • Explore your options in functional medicine
  • Schedule a consultation with a nutrition coach

At the end of the day, you have to be comfortable with your approach. And know that you don’t have to do it on your own. Making dietary changes can he hard. If engaging the support of a health or nutrition coach will help you in succeeding, go for it. You and your health are worth it.

*Alene Brennan works with individuals living with MS and other autoimmune diseases to create a diet and lifestyle that will support their healing and disease management. She holds four certifications: nutrition coach, yoga instructor, personal trainer, and natural food chef. You can learn more about her work and follow her blog, recipes, and more at www.alenebrennan.com. Check her out on Instagram and Facebook, too!

Share

Remembering I’m the Boss for My Health Care Professional Team

By Stacie Prada

When I think of all the health care professionals I’ve seen in the last thirty years, it overwhelms me.  When I look at how I interact with them and how it’s changed with time, I think changes in my confidence level and perspective have contributed to much better interactions and level of care.

Thinking of the number of health care providers I’ve seen since reaching adulthood Continue reading

Share

Making MS the Punch Line

By Doug Ankerman

Finding humor in situations is what I did WAY before multiple sclerosis became my dance partner.  Writing jokes and doing stand-up comedy about the oddities of life and experiences was a way of dealing. So little did I know this skill (if you can call it that) would help me cope with an MS diagnosis back in 1996. Likewise, who knew sharing silly observations about MS would help others too. Helping them realize they are not alone.  That what they are thinking, feeling and doing is not problematic – it is just a part of life with chronic illness.

For example, do you notice Continue reading

Share

MS Humor, Maybe.

By Lauren Kovacs

Funny, not so funny. I know MS is really a mean demon. It tries to throw peanuts at you like a demented circus clown. I hate clowns.

Try and find humor in it, where you can.  Be silly.  Wear what you want, for example.  Try and do what makes your moment.  MS changes all day.

I can only wear certain sneakers. I like silly sneakers. Being in kids shoes, I wear whatever ones I like. The ones with lights are not yet in my closet. I have some dignity; however, I love my pink polka dot Chucks and my Sketchers with sparkles.

I do have some adult-restraint on apparel, but not too much. I wear only pull-on shorts/pants now. I kinda had a funeral for my button shorts/pants. Go crazy. There is little control with MS. Control your wardrobe. I am not saying wear big red floppy shoes and an orange wig, but have some fun.

Laugh at yourself. I fell at the doctor’s office recently. I jumped up and shouted, “I’m ok!” I didn’t really jump. I kind of slither up my walker. The only thing was a wee bump on my ego. Chocolate is great at ego repairs, too.

I once told a MRI technician that my lesions light up like a Christmas tree and I recommend he wear sunglasses. When he had to stick me eight times for the IV, I could not find any humor in that. I do not identify well as a pin cushion, and then spending almost two hours in a Pringles can they call a MRI was not funny.

Find humor in MS. Laughter is the best medicine, they say. I have to use a life vest in my own pool now. I call it buoy training. I have very little control in the water now. I would be a floating chicken nugget for a shark, if I was in the ocean.

MS can be very depressing. It is like MS jail. I had to turn in all my talents, before the life-long stay. Heck, I had to turn in my coordination, too. Trying to drink grapefruit juice out of a cup ended up on my face and in my hair. That hand earthquake left me with a burning eyeball. Make light of stuff.

Laugh off your quirks, when you can. If you laugh at yourself, it helps you and others move on. I know MS is mean and a thief. Making light of most MS incidents can help you not to dwell on the MS monster as much.

Share

I Have Multiple Sclerosis and I Still Smile

By Penelope Conway

When terrible things happen, one of the first things to disappear in the chaos is laughter. Somehow all the smiles and giggles that once filled the day get tossed to the wind and pushed aside giving other things more importance. Things like fear, anger, sadness and worries.

For many people, laughter just doesn’t fit in with all that’s happening in their crazy, mixed up world. I mean, how can anyone laugh when their life is falling apart. It just seems impossible…absurd…oh, so wrong. Continue reading

Share