Living with MS during the Corona Quarantine 2020

So, ever wondered what the twilight zone would be like in our life time?  I think we’ve hit it.  As we venture into this awkward time what priorities are you making to take care of your self?

The corona virus or COVID-19 (when it becomes an illness) has changed our world.  There is much we can learn about the virus and also ways to find a healthy, happy life amongst this chaos.

I mean, do we really need 48 rolls of toilet paper or paper towels?  Do we need to hoard and ration like it’s World War II?  It seems that is what we are facing, along with the demands of face masks and gloves.

Braving the market

And some people don’t even believe its a real threat.  Well, as a high risk person, I do believe it is real and know there are things we can do to improve our chances.

I’m sharing some of my activities and, Some information about COVID-19 via my friend and fellow advocate Cathy Chester, and some survival tips from Dr. Terry Wahls and the Wahls Team.

MY Corona Quarantine ACTIVITIES 
For the last month my days have been filled with projects, both big and small.  Things to get off my list because there is not a lot of work out there right now. People are hurting, investments are at an all time low, and money is being found between seat cushions and laundry piles in order to buy the next set of groceries.

I decided on a couple of projects that might interest you - in a way to stay a little happier and healthier during these stressful times.

My first one was a paint by number (PBN) that I received from Winnie’s Picks.  They based the image off a photograph I took in the Galápagos Islands.

Female cactus finch - Galápagos Islands - Photograph
The PBN was a bit difficult for me as I wanted to just paint and draw and feel the flow.  But, I loved the process, the puzzle of it all.  It also required patience and motivation, two parts of life that can easily slip during times like these. It took me awhile but with the quarantine and rainy days, the painting became a fun part of my day.

WinniesPicks set based on photograph

My version of the painting. 

Then I took out my pencils and art supplies and just started doodling.  One day I’ll start messing with more media but this was a fun start.   The process is healing and anything with hand-eye coordination helps my cognitive issues and more.  I also love the tactile aspect of touching and drawing and getting dirty.

Doodling...  

I also started a sour-dough starter.  Her name is Poppie.  Yep, I named her.  And she has produced a lot of good food for us. Now you’re thinking, hey, no gluten, or white flour, and usually I agree.  But in times of war and rations are low, one becomes thrifty and healthy.  Did you know that sour dough has been fermented and therefore the gluten is easier to digest?  I just learned that but in fact sourdough is really the only kind of bread I like.  I don’t eat a lot of it as it will mess with my MS, but have had fun playing in the kitchen.

Homemade sourdough bagels
In addition to starting my “Victory Garden,” the yard demanded some photography.  Or maybe I did as a mental release.



I was actually under the wether for a few weeks, recovering from a cold. It’s been easy for me to quarantine with my team, Mom and Dad.  They’re in their 80’s so are also considered at risk. We take it very seriously but also have fun. Walking, puzzles, and games, oh my!  Plus a lot of good cooking.  I’m feeling blessed and that’s a good thing these days.

I’ve also been enjoying my Cubii!  Remember that easy to use adaptive treadmill. Well, it’s one handy tool right now.  Cubii has special classes you can take online:
  • Carrie'e Cardio
  • Cubii Pyramid with weights or water bottles workout
  • Cubii functional fitness with Anne
  • Get your water bottle or weights ready for a Cubii workout 
Click here to join the facebook classes online!


Click here to learn more about Cubii.


But these are just my escapes during this pandemic.  There are still many questions about the Corona Virus, COVID-19 and MS answered in the links below:


MS advocate, Cathy Chester, wrote a beautiful blog piece answering a lot of questions.  Click here to access her blog, “AnEmpoweredSpirit” or click on image below:



Another resource that has helped is the Wahls Team.  Here’s what they have to say:



INFO about COVID-19

I spoke with Dr. Terry Wahls and the Wahls Team.  They have a lot of great information over on their website - click here.  I found the following to be extremely useful:

“As always, there are many actions we can control and take immediately that can have a major impact on our health and the health of others. Here are several ways you can improve your resilience and increase the probability of an infection being mild. Remember to work with your personal medical team to reduce your risk of contracting COVID-19.   
  1. Avoid all non-essential travel and non-essential meetings. 
  2. Improve the quality of your diet by removing added sugars, white flours, and processed foods. A high–glycemic index diet dumps a lot of glucose (sugar) into your bloodstream, which decreases your immune cells’ effectiveness at protecting you from illness. Avoid paleo-approved treats, which still have too many high-glycemic ingredients. Focus on vegetables and meat (legumes and gluten-free grains for vegetarians and vegans) and get rid of sweet desserts. [1-4]
  3. Get enough sleep, preferably 7 to 9 hours[5]. Sleep is vital to keeping immune cells ready to fight viral infections. Sleep deprivation suppresses your immune system’s innate ability to act as the first line of defense.  
  4. Wash your hands with soap and water vigorously for 20 seconds and avoid shaking hands to minimize the spread of the virus. I recently saw a great infographic that said “Wash your hands like you have just chopped hot peppers and are about to put in your contacts.”
  5. Wash your nose and sinuses twice a day with a Netipot®. This cleans your nasal tissue and reduces the virus’s ability to take hold. 
  6. Monitor your temperature. If it is above 100 degrees F (37.7 Celsius), self-quarantine for 14 days.  
  7. Stay home in your room if you become ill. If you develop a cough, sore throat, and runny nose do not go to work or frequent public places, which will spread the disease, perhaps to an at-risk individual for whom an infection could be deadly. Stay in your room and do not infect your family!. 
  8. Check your vitamin D level. If your vitamin D level is below 20 ng/ml, you are at increased risk for infection. Even at levels below 40 ng/ml, the risk for a wide variety of poor health outcomes goes up. If your levels are low, work with your personal medical team to increase your vitamin D level to get to the optimal range (top half of the lab’s reference range). Do not overshoot your vitamin D level however as that may become problematic as well. See https://terrywahls.com/shop/ for tests you can order and obtain directly.
Here are some natural remedies that Dr. Terry Wahls uses often in winter to help her and her family avoid and treat illness.  
    1. Eat raw garlic, which boosts your natural killer immune cells. Daily consumption of raw garlic can help prevent illness and reduce symptoms if you aren’t feeling well. When I develop symptoms, I eat raw garlic four times a day [4]. 
    2. Drink fire cider, which is a combination of apple cider vinegar, garlic, peppers, horseradish, and other herbs that amplify the natural killer cells. I take one tablespoon a day to prevent sickness and 1 tablespoon four times a day if I am already feeling ill. 
    3. Get more vitamin C. Daily doses of 250 to 500 mg once or twice daily can amplify immune cell activity and strength. We can’t make our own vitamin C. When we become ill, our vitamin C needs to increase. Nutritional biochemist Linus Pauling famously recommended additional vitamin C at the onset of the common cold (another coronavirus) [7].
    4. Get more pre-made vitamin A (retinol). I recommend eating liver (6 to 8 ounces) once a week or take organic liver capsules. Liver is an excellent source of the pre-made vitamin A. You can visit https://terrywahls.com/shop/ for the brand of organ meat capsules I suggest to my patients who choose not to eat liver or organ meat. 
    5. Get more zinc. Zinc deficiency is very common in those with chronic disease. Adding a zinc lozenge (5 to 50 mg) during the winter may be a wise protective measure for anyone worried about COVID-19 risk.  
    6. Consume more fermented foods such as kimchi, sauerkraut, dairy-free yogurt, and kefirs. The probiotics in these foods help modulate the immune response, lowering the risk of septic shock in response to serious viral infections. Sauerkraut is also a good source of vitamin C. 
    7. Elderberry syrup has been shown to be helpful against the influenza virus[9]. However, elderberry has also been demonstrated to increase the production of some cytokines[10]. For that reason, I do not recommend elderberry for COVID-19 related symptoms. It may increase the risk of cytokine storm and more severe reaction. For that reason, I would NOT use elderberry syrup at this time. 
    8. Get more omega-3 fatty acids in your diet or in supplement form. Omega-3 fats are necessary to make resolvins, a signaling molecule that turns off inflammation once the infection is under control or the repair process has been completed [11]. An insufficient omega-3 fatty acid level may contribute to NLRP3 and NFKappaB, driving high levels of cytokine that cannot be modulated correctly by the lungs, leading to cytokine storm and lung damage. Grass-fed meat, wild fish, and fish oil are good sources of omega-3 fatty acids. Hemp, flax, and walnut oil are vegetarian sources.
Here are the links to the CDC and WHO coronavirus sites:
Look for your local public health resources as well. Here is the Iowa coronavirus site. 
https://idph.iowa.gov/emerging-health-issues/novel-coronavirus

Social Distancing with Friend - stay safe!

Keep moving as best you can!

With my Quaranteam


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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