Sponsored: Making Progress With MS: Watching For and Talking About Signs of Progression

This post is part of a paid collaboration between myself and Novartis Pharmaceuticals Corporation.


I love a good compliment.

But sometimes the response can be complicated.

Tim and Caroline
“You look great,” says my friend.

Little does she know that the disease is wreaking havoc from the inside.

What do I say? “Actually, I feel like there is a 9 volt battery pulsating down my left side, I can’t see straight and want to go back to bed?” Or just say the usual, “I’m fine, thank you.” The bail out answer for many with MS.

Today my MS is invisible. Then, there are times I need a cane or wheelchair or other assistance. But today it’s only seen or felt by me.

The invisibility of symptoms can make it difficult to manage the potential progression.

It becomes easy to ignore the MS when possible, to think we can live and do anything we want without the consequences. This seems so desirable, to just live, and not think of our limitations. But ignorance, whether chosen or not, comes at a great cost and one that we don’t want to pay.

While we can visualize our wellness and happiness to help us achieve our goals, we don't want to look the other way. In an effort to not let MS consume us, we often ignore it. But ignoring key symptoms could lead to missing signs of progression.

Potential MS progression


Around 400,000 people are living with MS in the US.1 Of these, 80% of patients living with relapsing remitting MS (RRMS) have the potential to progress to secondary progressive multiple sclerosis (SPMS).2

The uncertainty of progression may lead to anxiousness about the future. We can choose to ignore this uncertainty or we can choose to help manage our future by taking preventative measures. MS progression can show up in many different ways. It’s important to look out for any new or worsening symptoms, no matter if they are big or small.

There are 8 functional areas to keep an eye on, including:

Assistance required to walk
Weakness or problems moving limbs
Problems with coordination
Bowel and bladder issues
Trouble with memory or concentration
Vision problems
Difficulty with speech or swallowing
Numbness or loss of sensation

But whether you have RRMS or have progressed, disease management plays a role in maintaining quality of life. Living with MS is a constant battle of disease management, awareness and gratitude. But most important is the communication between the person living with MS and their family, friends and doctors. All of these people provide essential feedback about our illness and can help us when we need it most.


Here is what we can do today:


From day one my neurologists taught me to treat the disease, treat the symptoms, and I will live my best life. She was correct. I couldn’t walk or see unassisted when I was diagnosed. I looked really drunk and it took years to slowly re-find my body and myself. Everyday can be a struggle with MS.

It’s time to slow down, relax, chill, and take a load off. Literally, release yourself from the pressures of having MS.

These are some tips that help me get through this life:

Attitude.

We can carry a chip on our shoulders. We can be angry. We can be resentful. But we can also learn to be grateful. We can learn to be positive and to help keep our MS on the best track possible.

We can make an effort and hopefully make a difference.

We’re not talking rose-colored glasses. But be honest and look for the positive. Smile at your MS and smile at yourself. You deserve it!

@NASA enjoying @JPL’s Lucky Peanuts! 
Keep track of your symptoms.

Find an easy and sustainable way to track your questions, symptoms and thoughts. Use a journal, MS app or notes on your phone and create a simple list to share with your doctor. Review this list with your friends and loved ones, see if there is anything you are missing or not remembering.

Even if the symptoms seem commonplace to you, include them on your list to your doctor, especially if they are new or getting worse over time. Every little thing so they truly know what is going on in your body and brain.

Talk to your doctor.

Ask questions and share your daily life experiences.

Topics to consider:

How is your MS on a daily basis?
Which symptoms are most problematic? Least?
Over the last 6 months, have you noticed new or worsening symptoms in the 8 key areas mentioned above?
How does the MS impact living your best life? Are you not doing something in life that you want to, and if so, why? Are you able to bounce back after relapses like you have in the past or do symptoms linger for longer?
Review MRI and other test results with your doctor.

Discuss symptoms and any changes in your disease. MS can wreak havoc on the body. It’s the day-to-day crud from the symptoms that can cause a decrease in quality of life.


Family and friends.

If you live with family or spend a lot of time with someone they may begin to notice your bad days versus the good ones. They may even comment and suggest slowing down or something else that might help. Often we want to snap back and say, “I’ve got this!” but in reality, they are right. We often need to slow down and heed our symptoms.

So many people with MS are go-getters. We like to see things done! But that also means we often thrive on burning the candle at both ends. And this is just not good for the MS.

Listen to your friends and family. Ask them questions and listen to what they say. “How do I seem to you - regarding my energy and MS symptoms?” This awareness helps build better understanding of MS for both patients and loved ones and may help detect potential signs of progression.

What I learned from friends, family and doctor.


My friend, Rora, noticed how my MS was worse during allergy season. My dad taught me the importance of not sweating the little things because, “It is what it is.” My mom helps me find ways to be more independent, encouraging my self-esteem at times when it’s low.

My love, Tim, reminds me about slowing down, saying no, taking care of myself and setting boundaries. My longtime friend, Susan, noticed that I have learned to ask for help. And Barby, who has been my cheerleader for the last thirty years, encourages me to strive with the perseverance and tenacity needed.

Caroline and long-time friend, Barby
My doctor reminds me that we need to care for ourselves no matter how visible the symptoms. There is an importance of mind over matter and staying positive but not foregoing important tests such as the MRI. And keep up with doctor visits.

Live life as best as possible.


What we do today affects how we live in the future, no matter the illness. With MS we know certain things can help prevent some progression:

If you smoke, find a way to stop.
Eat a heart-healthy diet.
Watch vitamin D levels and discuss with doctor.
Find a fun and safe way to exercise and enjoy the outdoor sunshine.

The one thing I have to remind myself all the time is that no one has extra special powers, especially our loved ones and doctors. Bring notes, be honest and work together to track your disease and potential progression, and live the life you want with your MS.




References
1Multiple Sclerosis Association of America. Frequently Asked Questions. https://mymsaa.org/ms-information/faqs/. Accessed September 10, 2019.
2Multiple Sclerosis International Federation. Atlas of MS 2013. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf.Accessed July 22, 2019.

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7 comments:

Cathy said...

Great, informative piece as if I'm having a conversation with you.

Caroline Craven said...

Hi Cathy, Thank you!

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BELLE said...

Hi I’ve been following you on Twitter for ages. I found your blog through a fellow blogger’s post. I like your blog. I was diagnosed with PPMS in 2010 after having symptoms for nearly 7 years (long story). By the time I was diagnosed I was tetraplegic and in a wheelchair. I also blog about how to live your best life and how to survive the beast! https://bellesdays.com

Caroline Craven said...

Hi Belle,
You are doing a great job with our blog. Thank you for sharing it with us! #takeTHATms!