My favorite tales

I sometimes forget that multiple sclerosis is a serious disease. And that things like the daily wearing of disposable underwear and typing with my left (non-dominant) hand were hard and demoralizing at first. They only became standard for me after I learned the new way I could do them. 
 
Once when I was feeling really sorry for myself I watched the movie The Bone Collector. I became enamored with the lead character who was completely paralyzed and bed-ridden, but discovered the he could still work as a detective. 
 
He found he needed a team to do his legwork, but that his brain was as sharp or maybe even sharper than ever (and did I mention that he’s played by Denzel Washington? Yummy!).
 
Additionally, every day he has to convince himself not to kill himself. Well really, that would’ve entailed convincing someone else to kill him or help him kill himself, which is probably illegal in his state.
 
Read the book
 
I bought the book and re-read the story. I wondered about the author and how he came to the story. What made him think of it? I don’t want to kill myself but it does make me think of the emotional battles I do often fight. 
 
It doesn’t comfort me to know that doctors now consider chronic depression, which is exponentially more common in MSers than in the general population, to actually be a symptom of our disease, a bug in our brain chemistry.
 
As an aside, one of my friends recently “exercised her right to die” in Oregon. She basically just stopped eating and drinking, and passed away peacefully several days later. So really if he wanted to really do it without help, he could have. But I digress…
 
Watched TV show
 
It has now been made into a weekly TV show. It shows on Friday nights which is, I think, a pretty dead time slot for television. It reflects the wishy-washy confidence of the network I guess.
 
I became fascinated with the workarounds that he found for himself. And in the end I thought if he can do it I can do it.
 
It was the first in my fascination with people who overcome or persist in spite of their disability. I collect the stories now, and revisit them when I’m blue. It reminds me that I have successfully persisted quite a bit!
 
What I’ve learned this week

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Ideas from the mini-kitchen

It’s almost summer! Here’s what I’m eating.
 
Frozen Green Peas
 
I try to eat fresh produce first thing in the morning for no other reason than I felt better doing it as I tried (and failed) the Wahl’s Protocol Diet.
 
This has you start the day with a fresh kale smoothie (after the overnight “fast” you get from sleeping) to “feed your mitochondria.”  This is my compromise.
 
Right now on Mondays I make a big bowl with a bag of frozen peas, a cup of nuts or mom’s “trail mix” (has nuts, raisins and chocolate!), and whatever leftover salad dressing (I’m using honey-mustard at the moment).
 
I keep it in the fridge with a spoon and just eat a few spoonfuls first thing in the morning while I’m heating up water for tea or oatmeal. It usually lasts me the week.
 
Whole Wheat Tortillas
 
I find tortillas are an easy carb to keep instead of bread for sandwiches. They seem to  last longer in the fridge, I get some whole grains in my diet, and they are easy to handle while working at the computer.
 
I really became a fan when I started eating salad greens wrapped in them. I justify it as an alternative to croutons. See my post about it here:  My salad wraps.
 
Recently I’ve had them with a filling of plain cream cheese, a pinch of crystallized lemon (which i already have) and raisins.
 
Another time I had some leftover bacon that I stirred into peanut butter and spread into a warm tortilla. Yum!
 
Ramen Noodles
 
Finally, this week I had an a-ha moment. It never occurred to me to buy the cheap packages of Top Ramen I so relied upon in college and NOT use the flavor pack! Or to just mix them up into soup. They are so flavorful and salty I viewed them as a bit of a guilty pleasure.
 
Then I was reading this old blog entry when I got to the part about making stir fry and using ramen noodles. I realized this would solve a problem for me: a shelf stable way to have a quick rice alternative! (Exploding head emoji)
 
I always think of rice as a quick and easy base for a meal. But it is messy to fix in a microwave and I don’t have space for yet another electric device like a rice cooker. So I asked a caregiver to pick me up some ramen packages this week.
 
My first meal with them was noodles, frozen broccoli, frozen meatballs, and just a pinch of flavor pack. Genius!
 
Others
 
I’m still enjoying microwaved frozen spinach with peanut sauce (but I haven’t yet found a bottled favorite; suggestions welcome!) and microwaved sweet potatoes, skin and all, with peanut butter and cinnamon-sugar.
 
And my current refreshing favorite is yogurt with added-right-before-eating frozen blueberries. Stay cool, MSers!
 
Links used above
  • True Lemon – “True Citrus products are the easiest way to add real, fresh squeezed taste to your water and recipes without piling on the sugar and salt.”
  • A Slob Comes Clean – “Realistic home management strategies and a message of hope for the hopelessly messy.”
  • The Wahl’s Protocol – “A guide about how to treat autoimmune conditions using functional medicine and nutrient-rich foods, from a doctor, researcher, and sufferer of progressive multiple sclerosis.”
  • My salad wraps – My post about eating salad greens in a tortilla.
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Lightbulb. Skin is an organ

 
I have never really taken care of my skin. I never got acne, just the occasional pimple. I washed my face at least once a day with Phisoderm or Cetaphil, gentle cleansers.
 
I didn’t moisturize regularly, and applied sunscreen only when I planned to spend the day out doing some activity, like skiing or going to the beach. 
 
But this article made me think about my skin as an organ. According to researchers, it is our largest organ, roughly 8 pounds (3.6 kilograms) and 22 square feet (2 square meters).
 
Could it be affecting or partially responsible for my MS? How could it not?
 
Medline
 
I poked around in the National Library of Medicine’s  PubMed* search: [(skin[Text Word]) AND multiple sclerosis[MeSH Terms]], but didn’t see anything relevant. Mind you, I’m not a scientist or expert in medicine. Caveat Emptor! 
 
*PubMed comprises more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.
 
 
I did see at lot of discussion about MS and sympathetic skin response (SSR) as diagnostic test. The SSR test measures whether the sympathetic nerves of the skin are working.
 
Apparently in a lot of MSers, the response is absent in one or both limbs, for example. In healthy subjects the response is always there. This is interesting, but not something I think I could fix!
 
Google search
 
Next I tried an internet search. Again I found nothing MS specific, although there are some warnings on various drugs about possible skin cancer. Meaning that some subjects began showing skin cancer during or after the trial.
 
There is no way to tell if the skin cancer was already “on board” before the trial started. Or if the drug made them more sensitive to the sun.
 
 
So there is some involvement there!
 
Ergo
 
Yet again I find interesting (to me) information, but nothing conclusive. Just a vague hypothesis: I think I should be taking care of my skin better.  But who knows what that means?
 
For now, I will just accept prevailing theory until proven otherwise. So I resolve to craft a regular, daily, non-negotiable skin care routine, something like this:
  1. Wash my face once a day, every night. Don’t over wash and risk drying out the skin, causing it to produce more oil.
  2. Shower, wash hair at least once a week. Gross I know, I used to shower daily but it’s hard now. Plus I read this and this
  3. Wash my feet every night before bed, slather with lotion
  4. Slather body lotion daily – moisturize, moisturize, moisturize
  5. Use sunscreen daily or at least before venturing outside anywhere
  6. Ask your GP to include a regular skin cancer check in your annual, or see a dermatologist. Some doctors recommend every year!
  7. Drink lots of water
All this is based on my gut feeling about the right thing to do for me. Your results may vary! 🙂
 
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Lorna’s briefest history of the ADA

Curb Cut At Night (Luke Keller ©2019)
Curb Cut At Night (Luke Keller ©2019)
As an MSer, I feel like I’m kinda late to the party with regards to understanding how important the ADA is. I was diagnosed in 1991 but didn’t really experience physical disability until later in my life.
 
Why I care
 
The NMSS says “The ADA covers almost everyone with MS — not only people who use wheelchairs. It covers every person with an impairment that substantially limits one or more major life activities.”
 
How lucky am I to be living in this era? I take my electric wheelchair for coffee, I do all my banking online, I am able to work from home as a reasonable accommodation, and I write my blog with voice-to-text dictation.
 
mini-lift
Mini-Lift (Luke Keller ©2019)
In fact, in his book, Enabling Acts (see full site below), Lennard Davis says “Today we routinely see kneeling buses and buses with wheelchair lifts as a part of the urban landscape. It is an aspect of the success of the ADA that many of its accomplishments are now invisible to us since they are so much a part of our lives.” (Emphasis mine)
 
How it came about
 
For example, one city might mandate a reserved parking space close to the entrance of stores. But it wasn’t a federally mandated law, no comprehensive legislation. It was a catch-as-catch-can basically wherever needed.
Pool Lift (Luke Keller ©2019)
Pool Lift (Luke Keller ©2019)
 
Before the ADA, lawmakers were passing little laws here and there to correct disparate problems that suddenly (to them) popped up.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
According to Davis, the initial idea behind the ADA was sparked by language slipped into what would become the Rehabilitation Act of 1972 for soldiers who were wounded in Vietnam. It said “No otherwise qualified handicapped individual in the United States, as defined in Section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” After many pushes, it was (reluctantly) signed by Nixon in 1973.
Bus driver lowering ramp (Luke Keller ©2019)
Bus driver lowering ramp (Luke Keller ©2019)
 
Next, after 20 years, and presumably once we had become used to the idea (sigh), the non-partisan National Council on Disability drafted the first version of the Americans with Disabilities Act. There was more political back and forth, but finally it was signed into law by Pres. George H.W. Bush in 1990. Then further amended and signed by Pres. (Bill) Clinton in 2009. Phew!
 
We made this
 
Some people are convinced that programs as monumental as the ADA will never again pass in our divided and hostile government. I hope that is not the case. As a collective, we Americans have shown the we can come up with all manner of clever solutions. 
 
Reading about the ADA made me realize how impactful it can be when the two parties of Congress work together to produce something for our common good. And it’s not perfect, but it makes space to let the creativity of society continue to reinvent how things could be made easier and more useful. 
 
Related stuff

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Group wheelchair posing

I’m no longer embarrassed by my chair; I kind of like it in the photo now. I’ve started collecting pictures of other people in wheelchairs like these as sample poses.
 
When I was first diagnosed and told I might eventually lose my ability to walk in the future, I was devastated. I couldn’t imagine anything more humiliating than being at belly-button level and wheeled around by others.
 
I immediately learned to ride a motorcycle, something I had wanted to do for years, figuring that I’d only have a short time left to do it. I even kept some old beat up shoes I could wear in the wheelchair to prove to others that I used to be able to walk.
 
Time went on, it didn’t appear likely to happen, so I eventually got rid of the motorcycle and threw those old shoes away. And when I did finally need a chair, I viewed it only as a necessary tool to get from A to B.
 
Strike a Pose
 
Now most of us like to have pictures to remind us of happy memories, or to prove that we did something and document who was there.
 
I am kinda stubborn and proud. I realized I’m no longer embarrassed by my chair; I kind of like it in the picture now. It marks time as “before” and “after”.
 
I started collecting pictures of people in wheelchairs. These are some of my thoughts.

Be Eye-Level ish

yes

seated family

no

family leaving hospital


As much as possible, arrange everyone to be at the same height. Be a group!

It’s not contagious

The wheelchair is just another piece of furniture. You might want to ask permission first, but it is usually ok to touch it.

image from lorna.typepad.com

image from lorna.typepad.com

 

In a Selfie

A selfie forces you to be at eye-level, and you probably will be touching. I think it is friendlier if others lean on the chair or sit on it, or touch it in some other way.

Over the Shoulder

It may provide more interest in a picture to have us in poses other than straight-forward. I noticed a lot of pictures where the person in the wheelchair is looking back at the camera, over the shoulder.


image from lorna.typepad.com

 

  image from lorna.typepad.com


With Friends

Another interesting pose is sitting at an angle to the camera and having the camera only slightly above or below the eye level of the person in the wheelchair.



I want a group picture to show that I’m part of the group, not the centerpiece of it; not me with the group but the group with me in it.
Group picture


Here at least others are leaning on chair. But why does the wheelchair have to be the centerpiece? Couldn’t she be closer to the end, say?

image from lorna.typepad.com
Lessons:
  1. Posing is hard except for taking a selfie with friends.
  2. Try to be about the same height with at least some of the others.
  3. Ask one or more others to lean on the back of or sit on arms of wheelchair.
  4. It’s friendlier if someone is touching you.
  5. I need to be more of a director with pictures; I can’t assume others know what works.
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I celebrate my carepartner: my Mom

Happy Mother’s Day, Mom, and thanks!

MomWe scorn the crass commercialism 
of Hallmark holidays 
and flowery memes, you and I 
(wonder where I get that from?)
but on the other hand, 
we still appreciate the sentiment
of a Happy Mother's Day wish,
a Happy Birthday hug.
So we celebrate May together,
the beginnings of Spring, 
sharing laughter and family.
And I will continue to say 
thank you, thank you, thank you
for being my mom,
(like you had a choice!)
wheeling me around the 'hood
cleaning my house,
changing my sheets,
helping me problem solve,
and loving me selflessly.
 
–lorna
 
Happy Mother's Day, Mom, and thanks!
 
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Follow-ups

Here is the latest on recent experiments I’ve tried:
 
 
At my next appointment, my doctor explained to me that dosage as high as was required for this protocol was not (yet?) available in this country, but taking fistfuls of the lower dose capsules as I was, was doing more harm than good.  With it, I was also ingesting more fillers and coatings daily than was safe.  
 
He said if I could find a compounding pharmacy I trusted (referring to a recent incident in SF that had exposed one being run solo by an older pharmacist who had made a life-threatening mix-up), he would certainly write a prescription for me to take there, but he also said that there was still no definitive proof that dosages that high made any difference in the disease.
 
I decided that improvements I thought ! had to my bladder could just as easily have been psychosomatic and in deference to my mobility, I decided to abandon this test for now.
 
 
I’m always hopeful about dietary changes, but I’m also easily discouraged when I can’t see immediate changes. When you think about that for a minute, you recognize how incongruous this is. This has proven to a silent, behind-the-scenes, slow-building disease (in my case, anyway); why should I expect dietary “tweaks” to make a quick, discernible difference?
 
On the one hand I say “No one cares about you as much as you do” suggesting that you can’t whole-heartedly trust medical advice, that you may be the exception to any rule, so if it doesn’t threaten your life, try whatever makes sense to you.
 
But on the other, whenever I’m giving up on diet, I go back to the standard belief that  “no specific diet has shown any long-term benefit.”
 
So ultimately, I rely on how it makes me feel.  In this case, the idea sounds good, but it has proven to be difficult to put into practice at this time. Making kale smoothies in my “mini-kitchen” is hard. I know I could set up a process to make it easier, but I guess part of me doesn’t feel it’d be possible to sustain.
 
 I decided to have a kale smoothie whenever I can, but not to go out of my way to insist on it daily for now.
 
 
This is still the situation for me.  That the jury is still out.
 
I read a disappointing article here. It reports that some researchers believe that “the drug is nothing more than an ‘expensive, overdosed version of Rituxan’…” That it was approved solely because the original was going off-patent, so the manufacturers raised the dosage level and ‘surprise!’: new test data.
 
I guess I don’t want to believe that is true, that it is a crass money grab at the expense of patients. But I also recognize that big pharma has every incentive to make money and little incentive to find a cause, much less a cure.
 
The silver lining that I stumbled across in reading this article is mention of the GRIT Freedom chair!  More to come on that!
 
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One goal to rule them all

For real change, you should only focus on one goal at a time. Like laser-focus. My example is Become an MS Expert.

image from lorna.typepad.comI love the promise of a new year. Fresh and bright. God willing, a whole new 365 days to become someone better, someone healthier.
 
What do you want your story to be a year from now? What major improvement do you want to have when you reflect on this year at the next new year? 
 
Pick One
 
According to an infographic from Happify, for real change, you should only focus on one goal at a time. Like laser-focus. Hence the title of this post, with apologies to Tolkien.
 
My example is Become an MS Expert. Then I will focus all my habits, choices, and routines for the year on this one area of 
 
Make It S.M.A.R.T.
 
If you haven't yet come across it, SMART is an acronym that is commonly used in goal setting, attributed to Peter Drucker's 1954 classic, The Practice of Management
 
It has evolved to mean different things to different people, as shown below, but basically holds that to make sure your goals are clear and reachable, each one should be:
  • Specific (simple, sensible, significant)
    Try to answer the six "w"s
    -who is involved?
    -what do I want to accomplish?
    -where (location)?
    -when (time frame)
    -which (requirements and constraints)?
    -why (specific reasons, purpose, or benefits)?
  • Measurable (meaningful, motivating)
    Establish criteria for measuring progress
  • Achievable (agreed, attainable)
    Must be something you can be reasonably sure you are physically capable 
  • Relevant (reasonable, realistic and resourced, results-based)
    Must represent an objective toward which you are willing and able to work
  • Time bound (time-based, time limited, time/cost limited, timely, time-sensitive)
    Anchored to a time frame gives it an urgency that sets your unconscious mind into action
 
For my example to Become an MS Expert: By end of year, in order to know the enemy, I will have read 4 books on MS, identified and visited at least two different local support groups, and found and bookmarked at least three websites for current MS discoveries. 
 
Just Do It
 
Let's take one small step today to begin moving on this goal. Maybe call around to find local support groups or go to the library to look for books.
 
According to Happify, "Research shows that people who actually make resolutions are more likely to commit to their changes than those who just try and change. "
 
Finally, one of my favorite quotes is "Two of the biggest mistakes you can make in life are not starting and not finishing." It reminds us to get back up on the pathway to our goal whenever we slip off.
 
Related stuff
  • Happify | website
    "the single destination for effective, evidence-based solutions for better emotional health and wellbeing in the 21st century."
 

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Underwear and pills, oh my!

When I was first diagnosed, ATMs existed and there were 24-hour grocery stores. I remember thinking that of all the times in history to be struck by this disease, this was the best.

Underwear-and-pills[1]
Random thoughts during recent morning ablutions. 🙂
 
One thing I was happy about when I was first diagnosed was that ATMs existed and there were 24-hour grocery stores. Soon we were becoming more comfortable with online Bill Pay and shopping online.  Tech was steadily improving and newer services were being invented. I remember thinking that of all the times in history to be struck by this disease, this was the best.
 
I applaud manufacturers making easy open tabs on cans, resealable bags on grocery items, even instant coffee and instant oatmeal. You can even find “instant” mashed potatoes in the freezer section made out of “riced” cauliflower which tastes good.
 
Pill Bottles
 
I recently bought a small bottle of allergy medicine (Benedryl).  It had an up caret  ∧ on the bottle and a down caret ∨ on the lid.  In order to open the bottle, you had to line up the two, then pop the lid open. I used my teeth and every once in awhile instead of behaving, the whole open bottle would go flying across the room spilling tiny, bright pink pills all over the tile floor. Which I then had to pick up FROM MY WHEELCHAIR!
 
Another time I was starting a new MS med to be taken orally.  I was so excited to not have to give myself shots anymore.  Then I discovered that the new pills were coming to me in a bubble pack; I had to pop one out each day, or pop out a bunch (while watching TV, for example) and store them in a used pill bottle for safe keeping.
 
My coordination has slowly gotten worse over all my years with this disease.  I have not been able to handwrite for about fifteen years; I use my mouse with my left hand and type with one finger.  Why, I asked my doc–and anyone else who listened–would the manufacturer package these pills in a way that makes it so hard for MS users to open? Luckily, they switched to a regular bottle in the new year.
 
I also have begun to notice pill bottle labels printed in larger type (is braille being used too?), which I assume is helpful for those with limited vision. I believe you could arrange with your pharmacist.
 
Lid colors
 
I have graduated to a twice-a-day pill dispenser (A friend’s husband said to her, “I don’t think I need that yet. It’s for old people!”  She said, “Yeah, so?” as she pulled her own pill dispenser out of the drawer with her vitamins and calcium.) When I think pill dispenser, I think convenience.
 
I get my prescription bottles with all different colored caps. As they seem to be standardized, I have been able to swap out my plain white medication bottle caps. Color makes me happy!
 
I confess that I take enough different pills that I started switching out all the caps on new bottles of things I need to take in the a.m. to blue caps, and things I need to take at night to magenta, and things I need to take both times to white caps. 
 
When I’m refilling my weekly pill dispenser (I do it every Saturday a.m) it makes it quicker to not have to read the label each time. Just put items in white capped bottles in both sides of the dispenser, items in blue capped bottles go in the a.m. side, and items in magenta capped bottles go in the p.m. side.
 
Incontinence Products
 
Before I needed to wear them, a friend and I joked that since these were only made in white, but I only wore black underwear, we should get the patent on colored, disposable underwear for when our generation started to need them. Oh ha-ha, so funny! (You and I both know they are more commonly known as Adult Diapers, but I hate that and since it is my blog, I will be using “disposables”.)
 
Flash forward to today, where lavender and peach colored disposables are common and I just saw Depend® offering a limited edition of black disposables.  Well, we had our chance.
 
So I applaud manufacturers for making incontinence underwear in colors. Also making incontinence pads, which are more substantial then menstrual pads and made to hold urine. 
 
I would encourage more standardized sizes and absorbency levels (see description of Tranquility products). When the store is out of our regular “product” don’t make it hard for us to find a suitable replacement. Standing around the shelves trying to read each different package can be mortifying. And if you have a caretaker doing it, I think it’s worse.
 
Just things that make me go hmmm…
 
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How to Find an MS Doctor

It used to be that we went to the doctor for diagnosis and to set treatment. We relied on them as the expert and, rarely, we would go to another doctor for a second opinion. But we are now in the information age. There is information from everywhere: on the internet, in drug company commercials, through ads in your favorite magazines, even advice offered unsolicited from strangers.
 
In a future post, I will discuss how to find trustworthy online information.
 
Your Primary Care Physician
 
If you have never been sick before, you may not even have a primary care physician. If this is the case, you can begin your search here.
 
“I’d never been very sick before MS,
so doctor shopping was uncomfortable for me.
–recently diagnosed MSer
 
The easiest way to find a neurologist is to get a referral from your primary care physician (PCP). Ideally you should be working with an MS Specialist but your PCP might want you to see someone right away.  Just know that a regular neurologist is a physician that specializes in neurological disorders including not just MS, but other conditions like stroke, Parkinson’s, and ALS. 
 
Whether you are newly diagnosed with MS or have had it for years, having regular contact with an MS specialist should be a priority.  
 
Where to Look
 
  • Consortium of Multiple Sclerosis Centers (CMSC)
    Generally, specialized neurologists at MS centers work primarily in the treatment of MS, have seen many more patients with MS and a much broader variety of symptoms than a general neurologist. To find the nearest MS center to you, visit the CMSC directory

  • Partners in Care
    NMSS’s Partners in MS Care program involves healthcare professionals in neurology, mental health and rehabilitation. To find a Partner in MS Care, use the search tool here to find doctors near you. New partners are regularly added. If you do not find what you are searching for, want personal assistance, or seek additional names of healthcare providers, please contact an MS Navigator

  • An MS Navigator
    The National MS Society’s MS Navigator can help you find a healthcare provider. They can also help you identify benefits you might be entitled to and health insurance coverage.

  • PubMed
    This database offered by the U.S. National Library of Medicine has more than 27 million citations to biomedical research from Medline. You can see which doctors and facilities are publishing MS research and can be considered experts.

  • Patients Like Me
    Online communities like this one have chat rooms, blogs, and survey information. You might ask for recommendations there.
Ask friends and relatives (and maybe people in your support group) for information and suggestions, but ultimately find a doctor you like and works for you.  Physicians should be willing to explain their treatment choice, listen to your concerns, and make adjustments where possible. If you are not feeling listened to, keep looking.
 
When you find one, keep on working with him or her. Build a rapport, tell him or her if you are getting acupuncture, or have a personal trainer or stress coach, for example. Studies have even demonstrated that shared decision making these days leads to better medication regimen adherence!  
 
and they can’t know what we are thinking 
unless we are willing to speak up and
get engaged on our own behalf. ” 
MSer speaking at a recent MS talk
 
Now more then ever there needs to be dialog between doctor and patient. And while healthcare providers should still be guiding things, we should recognize that it takes a team to manage anyone’s healthcare, not just for those of us with MS. 
 
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