If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:
1) I’m a stranger
2) You’ll probably spend the next six months scouring the internet and come across a plethora of excellent and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.
I completely understand. When you have a disease that doesn’t have a cure, you tend to subsidize western medicine with non-traditional options as you search for answers. Now don’t get me wrong. I’ll happily pop the “MS Cure All Pill” once science creates it. I’m also open to revamping my stem cells or fixing or replacing whatever freaky gene caused me to get this disease in the first place. But until the FDA says those procedures won’t result in a 3rd thumb growing out of my ass, I’m trying whatever else is available to me.
This approach requires reading many articles, researching new findings, discovering new tools and equipment, and embracing holistic approaches to health while seeking out recent, never-before-heard-of scientific advancements. Because when you’re diagnosed with Multiple Sclerosis, besides taking one of the more than a dozen available disease-modifying drugs, no one actually tells you what to do. There’s no standard MS protocol to follow. Science has no idea which diet works, which exercise is best, or which drug is better. Thus you fall down the Internet rabbit hole while looking for things to try.
Since I’ve had Multiple Sclerosis for thirteen years, I thought I’d write out what I wish the Neurologist had told me that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to daily during the first year.
A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon, or listening to beta waves during REM sleep. But most patients learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress release, and medication for your particular body, mind, and spirit.
But a chronic condition is just that – a condition – a state of health that changes. So even if you do everything right, you will experience a terrible day due to your diagnosis. Likewise, if you don’t take care of yourself, you can skate for a while, but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.
It’s not your fault, so cut yourself a break. You can’t control your genetic makeup or all the environments your parents or loved ones placed you in growing up. The only thing you can control at this point is your lifestyle choices. Therefore when it comes to any chronic condition, the famous adage, “Genetics loads the gun but environment pulls the trigger,” is accurate but perhaps lacking a third element…
“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.”
Embrace a general, anti-inflammatory lifestyle. Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten-free, paleo, raw, vegan, or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet to try.
Move as much as possible. Because MS can negatively affect your gait, balance, and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes, and choose walking instead of driving as often as possible, just because I could.
Find the best way to release stress. For some, that means yoga and meditation. For others, it involves kickboxing or banging out frustrations on a drum set. Others require a creative outlet to clear their mind and feel sane. Figure out what you need and do it often.
Give yourself time to grow and change slowly. Begin by eating more vegetables before giving up grains, only eating raw foods, or throwing out your microwave. The same goes for supplements, organic foods, and healthcare. In a perfect world, I would only eat organic, but if I did that, I wouldn’t be able to afford co-pays to see certain providers, buy a stylish walking stick, or try out the $200 foot-drop brace I found online.
Be a curious scientist about your health, not a judgmental inner critic. Keep a journal and take “data,” focusing on one change at a time. Start by noting how you feel physically, mentally, and emotionally when you try something new or different. Changes take time, so give your body time to adjust before trying something else and clouding the data.
Remember, this is a marathon, not a sprint. Non-runners need at least four months to go from their couch to the finish line. Being newly diagnosed with a chronic condition (that you’ll have your entire life) is like training to run yearly marathons. You’ll need to run regularly while figuring out the best way to eat, hydrate, stretch, rest, and rehabilitate injuries while responding to other illnesses, stress, and age-related changes. Twenty-year-old runners are different from 63-year-old runners. Disease processes across one’s lifespan require just as much adaptation and ingenuity.
Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy, and money.
Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth, but sometimes their delivery and word choice plant a negative seed that can grow wild weeds in your head.
I try to hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and optimistic as I am. I find someone else if I leave their office feeling discouraged and deflated. Medicine doesn’t know what cures MS, so it’s pretty arrogant to think it knows what will or won’t work for me. I’m happy to embrace a balanced approach to health as long as they’re happy to encourage me and my ideas. They know medicine, but I know myself.
Be gentle and compassionate with yourself as you figure this all out. After thirteen years of appointments, these are the professionals that have helped me the most and who I use as needed:
- Sarah Jamieson, Neurological PA-C
- Aaron Exum, Myofascial Massage
- Dr. Deb Morrone. Chiropractor / NeuroKinetic Tx / Frequency Specific Microcurrents
- Bianca Eulitz, Personal Trainer / NeuroKinetic Tx / Functional Range Conditioning
- Tania Danner, Hand Therapist
- Randa Muhtaseb, Physical Therapist
- Dr. Tara Tobias, Orlando Neuro Physical Tx / (Subscribe to her amazing YouTube channel)
I use these exercises, medicine, alternative therapies, nutrition, and information as needed..
- Yoga (Meditation, Pranayama, & Gentle, prop-heavy / chair classes that increase capacity)
- Equipment (Elevate Drop Foot Brace, Active hands, Theragun, Neubie Direct Current eStim Machine. )
- Western medicine (Twice a year Ocrevus infusions)
- Exercise (Elliptical / Rowing machine & calisthenics, CARS)
- Alternative therapies (Frequency specific micro-currents, NeuroKinetic Tx, Medical Cannabis),
- Nutrition (Whole foods eating)
- Stress release (Writing / Talking with friends with chronic conditions)
- Cutting edge information (Autonomic nervous system work, Neuroplasticity work, Irene Lyon’s Nervous System Work ).
I’m still trying to figure out how much and how often to do everything. I finally learned to figure out what I need, understanding that it’ll change, and I’ll have to tweak everything again. Because of that:
- I don’t get as mad as I used to when something stops working for me.
- I try not to let the amount of work required freak me out.
- I don’t feel guilty for not spending eight hours each day focused on my MS.
Seriously did you see the list above? It’s fucking long! If I did everything daily – I’d get nothing else accomplished.
Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money, marriage, health, or addiction illness. Others live in cults, suffer from abuse, get bounced around the foster care system, or are homeless. Many people are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Not to mention those either disowned by their families or downright suffocated by them. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.
Don’t compare yourself to others with your exact condition. I’m a 53-year-old, married, “doesn’t have to work,” white woman of privilege who is the mother of grown children. I have the time, energy, and money to try and fail at many things for my disease. If I were a single mom with two jobs and three kids, I wouldn’t have tried a fraction of the above options.
If anything, I blog about MS to try and cut through the bullshit to save others’ time, energy, and money. Therefore if you have a specific question about something I’ve played around with, reach out. I’m happy to offer my thoughts and point you toward any research I’ve come across so you can make the best decision for yourself.
Lastly, you’re allowed to grieve the loss of your health. I heard that to surrender means to mourn the loss of something. Thus before I could submit to the process of re-creating my health, I would first need to grieve the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I taken the time to grieve my diagnosis instead of jumping straight into “let’s fix this” mode.
Bottom Line:
- Don’t try to cure yourself of a disease that the smartest neuroscientists can’t figure out.
- Don’t put pressure on a sick body to heal itself without the help of modern medicine.
- Feel free to use eastern and western approaches to your medical care but don’t demonize doctors and drugs.
A yoga practitioner or a naturopath didn’t diagnose you. A medical doctor using a high-tech MRI machine did, so don’t rule them out when figuring out your long-term medical options.
Be positive and give yourself one full year to live as healthy as possible as a newly diagnosed, unhealthy person. After that, start playing around to figure out what works for you and your disease process. Then make a promise to yourself to keep doing the work required.
(And if you ever want to talk, feel free to call me. 🙂
This post was edited for clarification and added links on August 7, 2018, October 29, 2019, April 21, 2020, December 21, 2020, and August 9, 2022.
LindaBP 
OMG – since we both know Peggy, I felt like I could unpack behind you lol. Feel free to delete it. 🙂
If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:
A) I’m a stranger
ANSWER – My favorite is everyone thinks that just because we have MS that we will be life long friends. I one had a friend that introduce me to another friend at her son’s bar mitzvah party, by saying “I’ve been wanting to introduce you to one another for so long because you both have MS.” Now I get it, her heart was in the right place, but it was the wrong time in the middle of about 10 people talking at a black tie affair.
B) You’ll probably spend the next 6 months scouring the internet and come across a plethora of amazing and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.
ANSWER – I work in healthcare communications unpacking complex science and data every day. And I still found myself maniacally scouring message boards. And the only message I took away? There are a lot of people out there where MS is the least of their challenges. Admittedly that was nine years ago, but still.
Since I’ve had Multiple Sclerosis for almost a decade I thought I’d write out what I wish I had been told by the Neurologist that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to, daily, during the first year.
A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will definitely find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon or listening to beta waves during REM sleep. But most patients simply learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress-release, and medication for your particular body, mind and spirit.
But a chronic condition is just that – a condition – which is a state of health that changes. So even if you do everything right, you will absolutely experience a really bad day due to your diagnosis. Likewise if you don’t take care of yourself, you can skate for a while but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.
It’s not entirely your fault so cut yourself a break. When it comes to any chronic condition the adage, “Genetics loads the gun but environment pulls the trigger” is absolutely true but perhaps it’s lacking a third element…
“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.” ~ Linda Pruce
Embrace a general, anti-inflammatory lifestyle. Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten free, paleo, raw, vegan or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet to start with.
ANSWER – Nothing I’ve eaten has made a difference one way or another. As a matter of fact I haven’t changed my diet at all and I haven’t had any symptoms in 1.5 years and it’s plaguing me why now, but I’m also learning to let that go! My mom couldn’t wait to put Wahl’s Diet in front of my neuro early on and he looked at it and said (to this very intelligent woman) everything in moderation with exercise and she will live a long life. I told her that before we went in. There is a reason Wahls has made a ton of money and doesn’t accept insurance.
Move as much as possible. Because MS can negatively affect your gait, balance and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes and basically choose walking in lieu of driving as often as possible, just because I could.
ANSWER – AGREE 110% – I do cardio twice a week, pilates once, and work with a trainer one doing boxing! – and this is just really what everyone should be doing for their mind & body. They keep spending gazillions of dollars on diet & exercise research. They don’t need it. We know, less calories in, more exercise = not rocket science for the average person.
Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy and money.
ANWER – Working in science & medicine helped me to keep from doing this. I’ve always done chiropractics so kept with it, except for having my neck manipulated and fortunately having a sports medicine chiro now, you don’t need to do it since stretching is just as if not more effective. I’ve also done acupuncture on and off since it relaxes the eff out of me. And then massage, because, well, who doesn’t love a massage. I believe in complementary, but not alternative.
Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth but sometimes their delivery and word choice plants a negative seed that can grow wild, weeds in your head.
ANSWER – I’ve been like this long before the MS. Don’t want to share your direct contact details with me, including email address? Cool, no problem, but doesn’t work for me. I will find someone that will.
Personally I try to hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and positive as I am. If I leave their office feeling discouraged and deflated, I find someone else. Medicine doesn’t know what causes or cures MS so it’s pretty arrogant to think it knows exactly what will or wont work for me. I’m happy to embrace a balanced approach to health as long as they’re happy to encourage me and my ideas. They know medicine, but I know myself.
ANSWER – I tell doctors that I am not their “patient,” but rather a partner in my healthcare. I am the CEO of me.
Be gentle and compassionate with yourself as you figure this all out. It’s taken me a decade to find the right professionals (Sarah Jamieson, Tania Danner, Virginia Harte, Aaron Exum, Dr. Cassie DeVries, Hannah Vo-Dinh), yoga (meditation, pranayama, and gentle, prop-heavy, trauma informed classes that increase capacity), equipment (DBS, Step Smart brace, active hands, vibration machine, PT bar) western medicine (Ocrevus infusions and hand therapy), exercise (elliptical and rowing machines), alternative therapies (red light therapy, Feldenkrais, chiropractic care), nutrition (intermittent fasting and whole foods eating), stress release (writing and talking with friends with chronic conditions) and cutting edge information (autonomic nervous system work, neuro-movement therapy).
ANSWER – chocolate always works for me! And reminding myself, what would you say to a family member or friend who was going through x? Would you tell them to suck it up buttercup? Well, maybe sometimes, but definitely not as the norm. So why should I treat myself any less? Other than no one could be a worse enemy to me, than me.
Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money and marriage problems. Others have health issues, addiction, or mental illness. Some live in cults, suffer from abuse, get bounced around the foster care system or are homeless. People are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Many are disowned by their families while others are downright suffocated by theirs. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.
ANSWER – When I was leaving Europe to move back to the states, my lovely Fellow said, now remember, take care of yourself because you can still get cancer. Erm…bedside manner, work on the bedside manner!
Lastly, you’re allowed to grieve the loss of your health. I was once told that to surrender means to simply grieve the loss of something. Thus before I could surrender to the process of re-creating my health I would first need to grieve the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I simply taken the time grieve my diagnosis in lieu of jumping straight into “lets fix this” mode?
ANSWER – What frustrates me to no end is that even with two autoimmune diseases, since they often come in pairs, I am still healthy, barring needed to lost weight #eyeroll – BP, blood sugar, etc. etc. all still in the healthy range, which is great since that helps with the MS. But still makes you scratch your head…
Bottom Line: Don’t try to cure yourself of a disease that the smartest neuroscientists on the planet can’t figure out. Don’t put pressure on a sick body to heal itself without the help of modern medicine. Feel free to use both eastern and western approaches to your medical care but don’t demonize doctors and drugs. A yoga practitioner or a naturalpath didn’t diagnose you. A medical doctor using a high-tech MRI machine did the work, so don’t rule them out when figuring out your long-term, medical options.
ANSWER – For those of who are in the know about how complex the body is, I don’t even hear the word cure anymore, but I do push for collaboration between scientists, because the mine is mine (and big business profits) isn’t going to cut it anymore.
I can’t remember if you’re in NYC, but the MS nothwithstanding, I think we could be friends. 🙂
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LOVE your answers (especially your last one)!
Your fella’s “remember you can always get cancer” line made me laugh. I remember reading Richard Cohen’s 1st book and being shocked that someone would not have MS but also battle colon cancer twice, and survive a blood clot in his lung.
We would be friends, for sure. I’m in Maryland, so if you’re ever visiting Baltimore or DC let me know.
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I lived in DC/Md for eight years. I will be down to visit when the weather cools off 😉 I will for sure be in touch.
I’ve met Richard and Meredith a few times. Their honesty about the disease and how it impacts their lives is refreshing. Unfortunately he’s not doing well.
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What a sensible list!
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Thanks! I poked around your blog and I can’t wait to share it with my husband who also loves flowers, vegetables, birds and bees. 🙂
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