Tuesday

Join an MS study from the comfort of home. Receive $50 for your time.

Are you interested in helping advance research for MS but don’t know where to start? You’re not alone. Taking part in a research study for MS can seem overwhelming, but it doesn’t have to be.


A new at-home study called EMPOWER (Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response) is seeking volunteers with MS nationwide to better understand how MS affects the body. The goal of the study is to develop a blood test to help monitor disease activity and treatment response for people diagnosed with MS. The study is being conducted by DxTerity, a genomics company developing tests to better manage autoimmune diseases.

If you’re 18 years of age or older and have been diagnosed with MS (any type), you qualify.


Why Should I Take Part?
EMPOWER is an at-home study that can be completed in your free time. All you need to do is sign up online and a study kit will be mailed to your home.



What’s Next?
Follow the instructions in the fingerstick blood collection kit to collect a few drops of your blood (much like at-home glucose monitoring). Mail your sample to the research lab using the prepaid envelope.

When you’re done, log in to the secure study portal and complete a short survey online. You will be compensated $50 for your complete study participation, which you can keep or tell DxTerity donate to an MS charity of your choice. That’s it!

Ready to make a difference in MS research? I know I am. Click here to get started.



Thursday

Massage Benefits MS

Many folks have asked about the benefits of massage for folks with MS.
Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?



Massage!
Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.
Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.
The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.
One thing we can do to remove toxins is to have a massage. And what a treat it is!
Massage seems to help in several areas:
  • Spasticity
  • Pain
  • Fatigue
  • Poor circulation
  • Mental wellness...ahhhh....
The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.

"Massage and the underlying disease of MS

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:
  • relief of anxiety and depression
  • improvement in mood, self-esteem and body image
  • increased ambulation and improved physical and social functioning.
The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation."
So, keep up the massage and add some strength training or yoga to keep those muscles strong!
Lance Armstrong's LIVESTRONG.com talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage. Click here for more. "For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." They get it. They get the disease and seem to understand what we need to feel better. Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. "If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect." By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. "One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement." Wow! This is some great stuff. A must read for all with multiple sclerosis. Click here for full articleHere is a summary of MS symptoms. All can be helped with the right massage! The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly.Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries.Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet.Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain.Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension.Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain.One of my favorites? Lymphatic massage...you can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?

Friday

NEW Radio Show - Girl with MS launches weekly radio show!

Join me every Sunday, 5:30PST / 8:30ESt on MS and ME radio, part of the MS Global Support Network.  




Archived radio shows found by clicking here.


Want to be part of the show?  

 Comment below - we would love to share your MS story on Girl with MS!   

Sunday

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone 5 going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy.

It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives.

To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it.

So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time.

But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work.

Then, finally, I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services.

For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

#takethatMS

Tuesday

Creating your own health: Using Diet & Nutrition to Treat MS

Probably one of my biggest factors in managing my MS symptoms is the use of diet and nutrition.  During my three years in the double-blind, T-cell study, back in 2001, my hopes were on nutrition and all things alternative.  I willingly went off all DMD in search of a cure for MS.  But then reality set in, and it was all engines forward in the battle of natural ways to fight the progression of this disease.

Sporting my flower peace wreath
There is a lot of incoming research on Diet and MS.  There are also some active clinical trials.

Click this out:  Here is my article on Diet as a treatment for multiple sclerosis.

Diet - or better yet, a nutritional protocol, is essential in my daily battle against MS.  If my daily intake has too much salt, too much caffeine, too much gluten, too many processed foods, then I will pay the price.  And while that price may not be paid that same day, trust you me that it will not forget and will rear its ugly head.  And, more often than not, all of the prices will want to be paid on the same day at the same time, wreaking complete havoc on your life.


Go for color when cooking and creating healthy menus 
Fresh lemon is key!  Use in water, tea, baths, etc.

 #refresh
Click here for my article on Diet as a treatment for multiple sclerosis.

Become friends with your body and find a new level of wellness.  

Welcome to living with multiple sclerosis.   As you know it often does not bode well for us MS patients.  Out diseases are random and progress willy nilly.  But there are modifiable risk factors that we can take into consideration to help us strive for the best life possible despite's our illness.  These risk factors include cigarette smoke, alcohol, nutrition, supplement intake, exercise, and other situations that we have control over.
~if need be - pee on it and walk away~

Cig smoking is bad.  Bottomline, cut it out.  Alcohol is considered OK in moderation.  Consult with your neurologist or medical expert.  Often people find that Vitamin D, B12 and Biotin can all be beneficial supplements.  In addition, the nrf2 activator, Protandim, is found to be great at fighting oxidative stress.

So, that brings us to Diet, or nutritional protocol.   Everyone is different so finding a protocol that works best for you is key.
Gluten free bread is an option.
Here it is paired with home-made soup and fresh salmon salad.
One person who is making a difference with diet and MS is Dr. Terry Wahls and her Wahl's Protocol. I had the great fortune of speaking with Dr. Wahls a few weeks ago for an article I was writing for Healthline.com - "Diet as a possible treatment for MS".   And wow!   So much great information going on with diet and MS.

The Wahl's Protocol is a modified paleolithic diet.  More about it click here. For those who do not know, Dr. Wahls has made diet a form of treatment for progressive MS.  Thank you Dr. Wahls!   I have been following and almost identical diet based on my own experience for over 15 years.  It is the number 1 "go to" when things are going bad with my MS.

And if you don't have fresh flowers, the fake ones are fun too!

First, I ask myself:  How is my diet?  Where am I going wrong?   And most of the time, this usually fixes it for m!   Like I say, everyone is different.  This is one reason I love the Wahl's Protocol - as it suggests elimination type diets to see what you personally are sensitive to and this is BIG!

Here is my article on Diet as a treatment for multiple sclerosis.

Here are some food common sensitivities:

Processed foods
Salt
Gluten
Red meat
Simple carbs
Sugar
Sodas
Diet anything / excitotoxins or NaStY for MS
Dairy....

FYI - I eat dairy.  Cheese.  I tried to take it out of my diet once and my boss told me to add it back as the rest of the staff was complaining about my horrid mood.  That was near 30 years ago and I haven't tried to remove it since~  I don't eat a lot of it but like it now and then.   I will willingly cut everything else out, before the cheese~

Lately I haven't been able to eat much meat.  My body, probably due to the warm summer months, is craving cooling salads and fresh fruit.  Unfortunately I like beer, especially in the summer months.  It's not the alcohol that bothers me but rather the carbs and gluten.  Talk about a weight gainer!  And then if I add bread....Oh dear save me.

Last winter I made the mistake of letting way too much beer, bread and gluten get into my diet.  Showing no restraint at all for about six months eventually led to a 15 pound weight gain, horrid dry skin and then the dreaded MS relapse!   Ugh.

My vertigo and vision got so bad that driving was out of the question...even just to a friends house.  Lethargic and inflamed my life consisted of laying in bed and "trying" to motivate.  Oh how I hate this feeling!   My skin was dry and eczema appeared all over.  Hair loss was abundant and my breath was so bad it even grossed me out.   What have I done?  So healthy last summer and then wowza, what a defeat brought on by my own weaknesses.

Time to make a change!

Feeling the summer spirit, light and fresh!
Nothing huge at first, just cut the carbs back down to no more than 10% of diet or so.  Eliminated processed foods again and removed gluten for the most part.  A little now and then does not bother me.  But a six pack of beer and loaf of bread is not considered moderation.   That's OK, the change feels good.

Back to juicing and healthy eating.  Beautiful summer produce combined with beans and grains cooked fresh are making the table.  Herbs from the garden and cheeses and meats from local farmers inspire this cook to create.


Some of recipes for your enjoyment:

Anti-inflammatory Rice Pudding

Obsessive Gaspacho 

Juice Recipes

Chia Pudding


Words of Advice:

Try different diets.  Work with nutritionists who understand MS and the different trending diets.  This is your health - it is your body.  Do not try whack-doodle eating schemes.  Try stuff that has worked for others, the key word being "try".  Give yourself a chance with different foods and see what you might be sensitive to.  Everyone is different!  

Add color and energy throughout your house with fresh flowers.
Here is my article on Diet as a treatment for multiple sclerosis.

Friday

MS Medicines at a BIG savings!


MS sees no borders, neither does the GirlwithMS.com  

Medicine is expensive and many folks can not afford their treatments.  I am proud to off YouDrugstore.com as an option.  This is a Canadian company and can save patients up to 80% off of very expensive drugs.

The image below represents general pricing and not necessarily from youDrugstore.com. 




One of my passions is supporting American businesses but let's be honest, they are over the top expensive.  The main reason for prescription drug prices higher in the United States than anywhere else in the world is the existence of government-protected “monopoly” rights for drug manufacturers.  

For more information check out this article:  Why US Drugs Cost So Much More





Have Questions or Concerns?    Check out these facts: 
  • YDS is upheld by stringent Canadian Food & Drug safety standards.
  • They only source from Canada to ensure quality/safety/efficacy of medication sold
  • All orders *must* be accompanied by a legitimate prescription as an on staff doctor does verify before orders can be filled. They have a strict policy about this to maintain their approval and good standing with regulatory bodies
  • They are certified and endorsed both federally and provincially by by CIPA (Canadian International Pharmacy Association) as well as MIPA (Manitoba International Pharmacy Association) and in good standing as a BBB Accredited Business.
  • Also verified by PharmacyChecker, an independent 3rd party which verifies online pharmacies for safety/legitimacy.
  • Free standard shipping on ALL orders over $100 and low rates for orders under $100.
  • Prices marked in local currency so Americans can shop in USD
  • Fonts are large and easy to read for elderly and those with vision issues
  • Easy to use website. Prescriptions can be attached from your device/computer as an image snapped with a smartphone or other type of camera/image device.
  • Search for products by name - brand name and generics available (but they can only fill what the doctor has prescribed so if the RX is for brand, customer can only order that and vice versa if generic).
  • Up to 80% savings made possible simply due to government and regulatory differences between U.S. and Canada. Canada has caps on how much businesses can profit off sale of drugs which means no price gauging as unfortunately is common in the U.S.
  • Registering for an account is free
  • Customer service is available during business hours, M-F where needed and YDS strives to ensure professional, courteous service for all.
  • Packages are shipped discreetly with privacy in mind.
  • 90 Day Return policy and satisfaction guarantee for customer peace of mind
  • Over the counter drugstore products available
  • Accept Visa/Mastercard/Discover or a paper check.
  • YDS does not sell controlled substances or those flagged as highly addictive (i.e. Opiates)
  • They will price match against other CIPA-accredited pharmacies where price is lower (customer must provide proof - info in FAQs).


I hope this is helpful! For more, you may want to review their FAQs here: https://www.youdrugstore.com/faq.html

Interesting Research about Multiple Sclerosis




Oh what a year it has been!  

Here are some great research articles about multiple sclerosis that I wrote for Healthline.com this past year.  Quite a variety and feels good to look back and see how much was accomplished despite fighting relapses all year.  

A healthy lifestyle can and will make a big difference with this disease.  Take time to own it and kick it's ass.  Because it needs kicking.   

All I can say is #takeTHATms.  


Monday

Potential Natural Treatments for Multiple Sclerosis Symptoms

Do your research. Lots of treatments out there. Here is Some good, substantiated research on these items.  Check them out.  Tips and Tricks for Living Better with MS!



VITAMIN D

Vitamin D
Long touted as help for MS, this easy to take vitamin is proven again and again that it scientifically helps those with MS.  Recently studies showed that mothers who are deficient in vitamin D during their pregnancy were more likely to give birth to a child with MS.

Read More


MAGNETIC THERAPY

Bemer
May sound a little whacky but magnetic therapy is gaining ground in helping folks with MS using solid scientific studies.  Devices such as the Bemer, might just help you feel a little better.

Read More

OXIDATIVE STRESS -

Oxidative stress is known to be really hard on multiple sclerosis.  Basically it means that they fight free radicals in an effective way to be maximized by the body.   It is something we can actually work on improving.  Using an Nrf2 activator, such as Protandim, may help with some of your MS symptoms.

Protandim

Read More



Protandim is made from natural ingredients, plants and such.  Includes bacopa monnieri and turmeric.

Read More

curcumin from turmeric


Natural forms of Nrf2 activators proven to work include curcumin, from turmeric, as well as green tea.

Interestingly, the DMD, Tecfidera (a dimethyl fumarate drug) is based on the same activation within the body. 



Read More


Keep Checking Back - More Tips to Come!


#takethatms

(*This is not a medical site nor am I a medical professional -- These are items that have either worked for me or look promising based on research.*)

Living life to the Fullest with MS

There are days we are stuck in bed. Or a wheelchair or scooter or a cane. Some days we walk, run, bike and play. Sometimes gravity gets the better of us. Life with MS is not fun. But if we make it fun, then we can say #TakeThatMS!

Attitude is everything. Positive thought can make the difference. As well as learning how to chillax and accept that we have an illness and must take care of our lives as such.
  • Positive attitude. Can't say enough about this.
  • Awareness: meditation and mindfulness
  • Movement: yoga, exercise, tai chi, qigong etc
  • Nutrition: reduce inflammation and other symptoms through food
  • Social media: support groups, friends and family around the world who all understand what we are going through!
  • Peeing in ones pants: it's going to happen so just accept it now and move on.
  • Fatigue: oh dear. I just woke up and now it's bedtime again. How am I to to get through this day?
  • Depression, anxiety: talk to your DR. Use support groups, friends and family
  • Wine: may not be the best for MS physically but mentally can sure help the attitude
  • Learning to relax: it is OK to hold a couch in place with ones body
  • Boundaries: set them. Follow them. Your health comes first!
  • Ask for help: so many of us are Type A. Time to step back a notch.
  • Learn to say No: stressors come in all shapes and sizes. Priorities based on your health and well being are best.
  • Appreciate the little things in life. Stop and smell the roses.
  • Have fun! Pick up new hobbies. Look at life all over again with fresh eyes. Don't wallow in the past.
Here I am fishing once again. Fly fishing is very good on the nerves and when it includes friends, a twenty minute drive and funky Los Angeles surrounds, well, it all makes for a rocking good time! Now granted, I overdid a bit this past week and am feeling it today. It's Saturday and as I planned it, a pretty mellow day.
I'm feeling like the Giant American invasion on my little Philippine friends!

Last night I had a friends party and then a two hour Aromatherapy Yin Yoga workshop at my favorite little yoga studio in Montrose: TheraYogaStudio
Today: a relaxing Saturday with Wall Street Journal, and plenty of lemon-water throughout the day to cleanse this body!

How are you living life to the fullest with MS?

It's all a balancing act. Do more and pay the price. Treat your body right, get a refund on energy.
Right now, I'm treating the body right and restoring and rejuvenating for the week!





Thursday

Upcoming Paid Study on Multiple Sclerosis!

If you haven't already signed up for the MS Neighbourhood Research Project you still have time to do so. Check out the detail below

Hey peeps:  Here is an awesome way to say #takeTHATms.   Making money because you have MS!  

  Are you a Canadian living with MS?  




Well, now its time to get paid for it!   Check out this really cool project out of Toronto by Self Care Catalysts.  

Patient empowerment through self care and research

Upcoming Paid Study on Multiple Sclerosis:


We are conducting a study among people with Multiple Sclerosis to understand the impact of their condition on their quality of life and how it impacts their day-to-day decisions making.

Have you been diagnosed with Multiple Sclerosis (MS)? If so, we'd like to invite you to participate in an upcoming paid study on your MS experience.

The study involves completing a 14-day journal about your MS experience, and a confidential phone interview.

You may be eligible to participate if you are:

·       Above the age of 18
·       Have been diagnosed with MS
and MUST live in CANADA

If you are interested Click HERE to participate in this study, please take a few seconds to complete a quick survey

If you have any questions please call 1 844 475 4637 or email us at linda@selfcarecalatalysts.com.


Self Care Catalysts is a patient solutions, intelligence, and analytics company deriving value from patient-centered real world evidence to inform product life cycle management and behavior change interventions.



Our belief is that when patients are informed, respected, and engaged, they make better choices. Better choices mean better health outcomes. Therefore, it is important that patients’ views are well-represented in healthcare through the generation of real world evidence.
Our mission is to promote self-care behaviors among patients, while enabling patients to contribute their behavioral data to support important research across the product lifecycle, such as drug discovery, precision medicine, and development of support services and programs that are specific to the community. 
“Patients will build and own their health data.”
This blog post was sponsored by Self Care Catalysts.  Thank you for making a difference in the MS world!   .