Medical Marijuana and Its Effects on Multiple Sclerosis Caused Spasticity

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Multiple Sclerosis (MS) is a chronic inflammatory disease of the central nervous system. MS affects approximately 3.0 million people globally, with about 300,000 cases in the United States. Twice as many women as men have MS. The average ages for onset of MS is 20-40 years. In MS, cells in the immune system attack and destroy myelin, the fatty tissue surrounding nerve cells (http://www.phylomed.com/MS.html). Scar tissue replaces the myelin, interfering with the transmission of nerve signals and leading to numbness, fatigue, spasticity, loss of muscle control, and various other debilitating symptoms. There are four broad theories concerning the etiology of MS. The immune system, environment, viral infections, and genetics are possible factors attributed to the cause of MS.

Spasticity refers to an increase in muscle tone that causes muscle stiffness or spasms (Sibley, 105). There are two types of spasticity prevalent in people with MS: phasic spasms and a sustained increase in muscle tone. Phasic spasms sub-categorize into two types of spasticity: flexor and extensor. In flexor spasticity, the hips and knees of the person bend forward, due to tightening of the hamstrings. In extensor spasticity, the legs of the patient cross over at the ankles or lock together, with the hips and knees remaining rigid (http://www.nmss.org/msinfo/cmsi/spasticity.html). Spasms also occur less frequently in the arms, backs, and necks of people with MS. Both types of spasticity debilitate patients and lead to difficulties in performing daily tasks. Phasic spasms disrupt the balance of the patient and can cause severe pain.

Multiple sclerosis sufferer Royce Brewer cleared after experimental treatment in Russia

A year ago Canterbury man Royce Brewer could barely put one foot in front of the other.

Now the Rangiora resident is working as a landscaper and has just finished laying a cobblestone path.

Brewer has suffered from multiple sclerosis (MS) for about 20 years, but his life changed after he travelled to Russia in February for a procedure deemed “experimental” and not supported or provided for MS sufferers in New Zealand.

Gabby and Royce Brewer at their wedding in April 2014. Gabby played a big role in raising $80,000 to get Royce to Russia ...

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Gabby and Royce Brewer at their wedding in April 2014. Gabby played a big role in raising $80,000 to get Royce to Russia for treatment.

“Just little things in life that you take for granted have vastly improved,” his wife Gabby Brewer said.

“And they improve every month,” Royce Brewer added. “Something gets better. At the moment I’m really tight in all my muscles, so I’m going to see a friend who’s stretching me, trying to release everything.”

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* Hunt after cure for MS disease

Brewer says another issue MS patients face is finding work, but his new employer, Zac Staples, gave him an opportunity.

ALDEN WILLIAMS/FAIRFAX NZ

Brewer says another issue MS patients face is finding work, but his new employer, Zac Staples, gave him an opportunity.

On Tuesday Royce Brewer received test results indicating his MS was in remission. His lesions have also begun to shrink – a rare occurrence.

A hematopoietic stem cell transplantation (HSCT) is a procedure where a person’s stem cells are removed, purified and concentrated.

Chemotherapy then completely wipes the patient’s immune system and the stem cells are returned.

The Brewers reckon if Royce had not undergone HSCT, he “would’ve been in a wheelchair by now, or [using] a walking frame”.

“The lesions … were spreading down my spine,” Royce Brewer said. “That was the next phase, was a wheelchair.”

HSCT is an option in New Zealand for the treatment of some cancers, but is, at this stage, considered too risky for MS.

Ministry of Health chief medical officer Dr Andrew Simpson said “a strong body of clinical evidence supported by New Zealand clinicians would be required” before HSCT would be considered for Kiwi MS sufferers.

Multiple Sclerosis Society of New Zealand vice president Neil Woodhams said the society advised caution for those looking into HSCT before committing to travelling overseas.

Various pharmaceutical medicines are instead the option for treating the autoimmune disease in New Zealand.

“Some people with MS are very badly affected and it seems as though [HSCT] offers less benefit for them than people who are not so badly [affected],” Woodhams said.

“Our advice to people who are contemplating it is to make sure you have very good clinical advice before you go ahead with it, because it is a procedure that has significant risks.”

Australian neurologist Dr Colin Andrews supports HSCT and practiced it in Canberra for about six years.

He said the mortality rate for HSCT had dropped to 0.3 per cent, from 1.3 per cent during the previous decade and 3 per cent before that.

Andrews said two people in Australia each week were travelling to countries like Russia and Israel each week to have the treatment as it required stricter criteria at home.

New Zealand and Australia were “just not up to date,” he said.

The Brewers raised more than $80,000 to send Royce Brewer to Russia for a month for the therapy. Successful treatment meant no more MS medication and fewer trips to his doctor.

When he arrived home, “pumped” with steroids and painkillers for the plane ride, he was near bedridden, but quickly made progress.

“It was about a month in when all of a sudden I realised I wasn’t feeding [Royce] Panadol four times every hours for his headaches, because they just had gone.

“[That] was sort of the first sign that, we were hoping, this treatment had worked.”

“I would love to see the New Zealand medical community actually getting in behind this, looking into it and understanding it,” Gabby said.

I’m Fasting For Science: Will It Help Tame My Multiple Sclerosis?

Image result for I'm Fasting For Science: Will It Help Tame My Multiple Sclerosis?

When I told my coworker that I was participating in a study that involved fasting, she laughed until she nearly cried.

My boyfriend, ever supportive, asked hesitantly, “Are you sure you want to try this?” Note the use of “try” instead of “do.”

When I told my father over the phone, the line went silent for a moment. Then he let out a long, “Welllllll,” wished me luck, and chuckled.

Turns out, luck might not be enough.

I like to eat. Often and a lot. Now, however, my eating habits have become more than a source of amusement for friends and coworkers. Now they are data in a study focusing on people with multiple sclerosis, like me.

The Importance of Stretching With Multiple Sclerosis

Stretching is important when you have multiple sclerosis.

I’ve said in more than one blog that I consider myself to be a healthy person who happens to live with multiple sclerosis (Multiple Sclerosis). “Healthy,” perhaps, but lately I’ve found myself significantly out of shape.

With all that 2016 has brought upon me, I decided to ask my wife, Caryn, for help in getting onto a stretching program to help with the things that MS has thrown my way.

How to Stretch With Multiple Sclerosis

The National Multiple Sclerosis Society (NMSS) has set out the following guidelines for people with MS as we get into a stretching routine:

  • Stretch on a daily basis, as much as is possible.
  • Include muscle groups that are tight or in spasm.
  • Do slow, gentle, prolonged stretches, and go just to the point where you feel a gentle pulling, but not pain.
  • Hold stretches for 20 to 60 seconds or 5 to 10 breaths.
  • Avoid bouncing movements.
  • Use assistance as needed: a partner, towel, or strap (talk to a yoga teacher or physical therapist about what you can use to help you stretch — and how to use it).

Most of the stretching I’ve been doing has included some form of assistance — be it a chair, the wall, or often, Caryn herself. My balance has become something of an issue, so having something or someone to hold onto while stretching has been helpful.

Also helpful for when balance is even more of an issue is an illustrated, online manual from the NMSS called Stretching for People With Multiple Sclerosis.

This manual has drawings of stretches that can be done seated or lying down. It has specific stretches for some areas of spasticity and other difficulties that commonly affect people with Multiple Sclerosis.

For my own routine, I’ve dug out my physical therapist’s notes from after my hip replacement to help ease some stiffness in that area of the old body, particularly.

How My Stretching Is Paying Off

How out of shape am I? Well, let’s just say that the day after those first stretches I felt like I’d gone a few rounds with an Olympic boxer. But I’m keeping it up. I’m feeling the benefits after just a week.

My balance isn’t any better, my stamina is the same, and my spasticity hasn’t eased in affected areas. But I do feel a bit more loose and flexible. I enjoy the routine of taking half an hour out of the day to look after myself, and I look forward to the other anticipated benefits as they come.

Even if they don’t, continued progress along the lines that I’ve already experienced would be enough to stay the course.

A physiatrist who specializes in multiple sclerosis once told me, “Everyone should stretch every day … Multiple Sclerosis or not.” It’s just taken me a little while to come around to heeding his words.

I’m probably late to the table on this one. Who else has some stories of stretching and their multiple sclerosis?

Wishing you and your family the best of health.

Cheers,

Marijuana Touted by Some as a Treatment for Multiple Sclerosis

While the evidence is mixed, marijuana supporters say cannabis can ease symptoms for people with multiple sclerosis.
marijuana for multiple sclerosis

Will medical marijuana prove to be a miracle treatment for people with multiple sclerosis (MS)?

The National Multiple Sclerosis Society says there are uncertainties about how effective marijuana is in relieving MS symptoms. But the organization supports the right of patients to work with healthcare providers to access medical marijuana where legal.

Supporters of medicinal marijuana are more forceful in their advocacy.

On the website herb.com, supporters say medicinal marijuana has been “widely successful” in treating MS symptoms. They list seven ways they say cannabis eases MS symptoms.

 

Long history of treatment

Cannabis has been used since ancient times for a variety of conditions.

In 2011, a cannabis extract was first approved in Germany for the treatment of spasticity in people with MS.

Since then, only two synthetic drugs containing THC have been approved by the U.S. Food and Drug Administration (FDA). They are Marinol and Cesamet, used for treating nausea in people undergoing chemotherapy and people with HIV.

The only naturally occurring THC-based drug — the oral spray Sativex — used for the treatment of spasticity in people with MS, is approved in several countries including France, Canada, and Sweden. However, it is currently not available in the United States.

Although the FDA has not approved any product containing botanical marijuana, FDA officials say they understand there is considerable interest in the use of the substance to treat a number of medical conditions, including MS.

And while studies continue to recognize the benefits, many people are not waiting for FDA approval. Self-medicating with marijuana is common, with the most frequently reported conditions being pain, anxiety, depression, headache and migraine, nausea, and muscle spasticity.

 

How it works

Cannabis works with the endocannabinoid (EC) system in the human body via the CB1 and CB2 receptors by mimicking natural chemicals created in the body.

This action encourages growth and activity within the EC system.

The EC system is found throughout the brains and bodies of all mammals. It influences memory, energy, balance, metabolism, response to stress, and more. Basically everything that can be affected in a person with MS.

While receptor C1 is found primarily in the brain and C2 in the immune system, both receptors have been found on immune cells suggesting a strong relationship between THC and immunosuppression.

By mimicking chemicals in the body, cannabis has been found to promote neurogenesis and even stimulate growth in the myelin sheath, both necessary steps in stopping the progression of MS.

 

Why use it

Pain is the most common cause for the use of medical marijuana in the general population, while the most common use for those with MS is for spasticity and tremors.

Pain throughout the body may be targeted with ingesting or vaporizing cannabis, while a specific spasm might be treated with a topical ointment or transdermal patch.

Cannabis has shown continued success in helping people with MS control bladder issues such as incontinence and leakage with only a few side effects, suggesting it is a safe and effective treatment for other symptoms in people with MS.

Losing sleep is not just an annoyance. It can cause fatigue and depression and affect mental stability and cognitive function. Cannabinoids have been found to help with sleep issues and prevent worsening symptoms.

Inflammation is considered the root of many illnesses and known to cause MS symptoms and relapses. Due to the interaction with receptors C1 and C2, cannabinoids are considered potent anti-inflammatories, a critical element in reducing MS activity.

There are several ways to take cannabis including ingestion, smoking, vaporizing, and topical use. Any kind of smoking can cause injury to the large airways and promote chronic bronchitis, and is not considered a safe way to take cannabis. Edibles, while considered safer, are sometimes difficult to measure with regard to the THC quantity.

Using a vaporizer has shown to be a safe and efficient way to take medicinal cannabis. And topical ointments and dermal patches provide an easy way to target specific areas on the body.

While some medical facilities and professionals are still opposed to medical marijuana, a growing number of doctors and clinics across the country are calling for more extensive and representative clinical trials as a result of a significant number of successful studies.

A Kidney Stone Plus Old Multiple Sclerosis Symptoms Try My Patience

kidney stone plus MS symptomsI don’t remember exactly where I heard or read a phrase about being the beneficiary of other people’s patience. I do seem to remember that it was in a negative context and that it had to do with the decline of existence.

Something like, “with nothing left but to be the beneficiary of other people’s patience…”

I’m beginning to think that, while I hope that I am far from such a place, perhaps I should be a bit more patient with myself.

Last month, after a particularly busy run of things, I was hit by a kidney stone. The sharp little bugger took some time to pass, and I must admit that when it did I was left feeling quite diminished – a feeling that has yet to dissipate completely.

While others in my life have afforded me their support, kindness, and yes, even patience, I do not think I have allowed that same to myself.

Giving Myself Permission to Heal

I have had a cascade of old multiple sclerosis symptoms revisit as I recover from the kidney stone, and I find myself stating aloud how much I hate MS. I battle harder against a wall which feels twice as thick as it was before – and let’s face it, the wall of MS can be pretty damned thick all by itself.

I chide myself by saying “Just get through this” and “Don’t give in” when what I may need more is an understanding inner voice granting me permission to take some time and heal. Perhaps this is a lesson we could all use from time to time.

This sense of slower than usual recovery (this isn’t my first kidney stone) and the feeling that the stone took a little bit extra out of me this time could simply be a factor of age. That it’s compounded by MS cannot be denied, however. I’ve been going through a bumpy patch and it’s been evident to those around me. They’ve offered me kindnesses when I have simply judged and pushed myself.

I needn’t be just the beneficiary of the patience of others – I believe I must be the benefactor of that same patience with myself. I’m all about can-do thinking and a positive attitude, but I also think a bit of self-administered kindness will go much further in this particular case.

I look back on a number of missed blog posts in October due to my circumstances, and I have felt guilt and inadequacy. Knowing what it took to just get those few thousand words written, I feel overwhelmed and, again, a little bit inadequate.

These are the times that others – particularly my wife, Caryn, and my editor, Rose – have offered me patience and kindness and support. Knowing how good it feels to be understood when a situation becomes difficult, you’d think I’d have learned to understand myself and be a bit kinder to the man in the mirror.

I appreciate the gift of patience I am given by others.  I believe it’s well past time to self-gift a bit of it, too.

Wishing you and your family the best of health.

Cheers

20 Inspiring Multiple Sclerosis Tattoos

Many people who have chronic conditions get tattoos to remind themselves, as well as others, that they are stronger than their disease. Others get ink to raise awareness and to be heard.

Multiple sclerosis (MS) is an autoimmune disorder that affects about 2.5 million people around the world, many of them between the ages of 20 and 40. It’s a chronic condition with no cure, though there are treatments that can slow the disease’s progression.

Here are just a few of the tattoos that people who have MS have gotten to boost awareness about the disease, and to give themselves the strength they need to keep fighting it.

If you’d like to share the story behind your MS tattoo, email uswith the subject line “my MS tattoo,” along with: a photo of your tattoo, a short description of what it means to you, and your name (if you wish to be identified).

 

amy_riley_tattooamy_riley_quote

“I was diagnosed three years ago. At the time I was really struggling with MS and my weight. After a year of waiting for the other shoe to drop, I took back my life and decided I wanted to live, be happy, and as healthy as I can be. I’ve lost 156 pounds and am in shape to fight this disease. This tattoo is my reminder that even with MS, I am alive and the beat goes on!” -Amy Riley

denise_dambrose_quotedenise_dambrose_tattoo

“I have always wanted a tattoo but never knew what or where. When I first read the Spoon Theory, I knew then what I wanted. Had a childhood friend that was a tattoo artist, knew him since I was in middle school, so what better person than someone who knew me personally? He didn’t know I had MS, just what I wanted. After flying back to Florida (I now live in Texas) for treatment, we got together. While I got on the table, he asked me about the orange ribbon, and I explained to him I had MS. He told me that the reason he moved back home was to take care of his grandma who had it as well. I just felt like the entire experience came full circle and had that much more meaning.” -Denise D’Ambrose

dave_warden_tattoodave_warden_quote

“Mine is a wind-blown sun with tattered rays attached to damaged myelin-spoked fibers. The sun represents strength, old, damaged, but with a smirk smile he still fires on … I do want to get another one, but this one was a year in concept, design, and sit down. I am still thinking what and where.” -Dave Warden

luna_montanaro_quoteluna_montanaro_tattoo

“Multiple sclerosis is very aggressive and rapidly progressive, so I am dependent on the electric wheelchair and blind in the left eye. ‘Speranza’ is the Italian word for hope, the tattoo always reminds me to believe in myself and never give up.” -Luana Montanaro

mary_dudgeon_tattoomary_dudgeon_quote

“I decided to get an orange ribbon with a purple infinity sign to symbolize my never-ending fight with MS and fibromyalgia. Then ‘keep s’myelin’ under so I remember to laugh and not sweat the small stuff.” -Mary Dudgeon

misty_schwandt_quotemisty_schwandt_tattoo

“I was diagnosed with RRMS in 2011. My sister (actually best friend but more like a sister) and I always wanted to get sister tattoos. My diagnosis got the best of me emotionally at first then physically. My sister and my family rallied behind me and we started a team for the MS walk in Boise, Idaho. My sister has never left my side through good days and bad, and we decided to finally get a start on our dream of getting a tattoo and added the MS ribbon as a sign of my strength and as a sign to tell others my sister has my back in this fight against it.” -Misty Schwandt

lisa_schlecht_tattoolisa_schlecht_quote

“I recently got an anchor tiny tattoo on the outside of my left ankle because my left side has proven to be my most challenging side since being diagnosed with MS almost a decade ago. My left side frustrates me at times as I draaaag it around, but this simple tiny tattoo reminds me every day to be hopeful and that my left side, as a whole, will be stable and secure.” -Lisa Schlecht

courtney_wood_quotecourtney_wood_tattoo

“My tattoo is in honor of my mom who lost her battle with MS in 2014. She loved hummingbirds, but I didn’t want anything fancy, just something simple. The ribbon addition idea came to me right before I got the ink. I always have my momma in my heart, now I proudly show her to the world.” -Courtney

nikki_cryan_tattoonikki_cryan_quote

“Here is my MS tattoo that was a collaboration between myself and my artist and cousin, Stacey. I knew I wanted a butterfly, to coordinate with another tattoo in memory of my mom, and the word “believe,” my life motto. At the last minute, I thought of making the body of the butterfly an MS ribbon in the shape of a ‘b’ to start ‘believe.’ Stacey agreed.” -Nikki Cryan

valerie_howlett_quotevalerie_howlett_tattoo

“I was a young, newly married college graduate who just received a life-altering sentence. The first year was filled with flare after flare and it was through my inability to walk that my strength came from my faith. John 11:4 is a very specific and special scripture that enabled me to face the fear and know my disease was the thing that brought my religion into a personal relationship with Jesus Christ. The MS ribbon reminds me of what brought me to a deeper faith (represented by a fish).” -Valerie Howlett

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“Every time someone asks me about my tattoo, that’s one more person made aware that it exists.” -April McKinley

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“My mother, Libby, was diagnosed in 1991 with RRMS. After years of battling, she succumbed to complications brought on by MS on November 23, 2009. In December 7, 2008, I received a diagnosis of the same. I am RRMS and a warrior. I fight for both of us. My tattoo is my own design. Mom’s favorite flower was daisy. Naturally, the center had to be orange.” -Karen

kristin_isaksen_tattookristin_isaksen_quote

“I got this tattoo of a demyelinated nerve cell as a birthday present for myself to memorialize my date of diagnosis. I didn’t want something anyone else had and I chose the placement because of the correlation of the spine to nerve concentration and lesion location. To me it symbolizes strength, perseverance, and hope.” -Kristin Isaksen

mary_quotemary_tattoo

Living with this disease for 11 years now. There is still hope that a cure will be found in my lifetime!” -Mary Arbogast

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“I was diagnosed three years after my mom passed away. It was so hard not having her there. I know I’m strong because of her. Fighting this craziness they call MS isn’t always easy but I know I can make it through and I know my mom and my family and friends are right there. I love my tattoo because it’s got the whimsical beauty that is this journey we call life. MS is just a part of mine — not the whole thing.” -Lacey T.

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“For years, even before I was officially diagnosed, butterflies were always around me, they are a symbol of hope.” -Kristina Palmer

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“The thorns are the metaphor for my MS. The courage is what I need every day and the roses are for the years I’ve had MS.” -Jeannie L.

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“I got this tattoo for my mom, who has MS. This woman is my rock and I would do anything for her. Her story is amazing and she overcomes so many things every day! Please share and spread the awareness of MS!” -Kennedy Clark

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“Although I was devastated by my diagnosis, I wasn’t going to let it take over my life. A tattoo shop was doing breast cancer ribbons, and all proceeds were being donated to research. My two sons, husband, and I all decided to get MS tattoos, knowing proceeds were going to a good cause. A family that tattoos together stays together — they’re my world.

“Life’s beautiful and reminds me to ‘just breathe’ each day. It reminds me that so many have MS with different symptoms, but we are all family.” -Londonne Barr

lovey_ray_quotelovey_ray_tattoo

“I gave my artistic 13-year-old daughter my thoughts on what I’d like in a tattoo after being diagnosed in 2014 and she created this beautiful piece of art. My favorite animal, the lion, represents the strength needed in many areas of my life and needed to save my spoons daily.” -Lovey Ray

Spasticity: Another Symptom of My New Multiple Sclerosis Normal

spasticity in arms another symptom of m new multiple sclerosis MS normal

My wife, Caryn, was the first to notice one of the things that seems to be part of my new normal as I recover from my last MS “thing”: She asked me a couple of times about my left hand as I was doing (or trying to do) something that did not involve that appendage.

While I was walking with my crutch, reading your comments, or simply having a chat with our dogs, Caryn noticed my left hand was curling at the wrist and fingers. I straightened it out as much as I could, but within a few minutes it was back in the same position.

Caryn said it was as if I was “throwing gang signs” as I walked. I love my SoCal girl from the barrio.

I’d forgotten to mention it to my multiple sclerosis team when we were going over things before the neurological exam we all know so well. My hand and fingers on the left side (and leg and foot, for that matter) are markedly weaker than they were just over a year ago when I had my last visit.

Caryn brought it to my doc’s attention as we were making our staggered exit.

He said he’d observed it while we were talking, and that it’s spasticity.

Because what I was experiencing did not meet my assumed definition of spasticity, I thought it might be a good topic for our running MS Symptom Thesaurus.

A Different Kind of MS Spasticity

While most definitions of MS spasticity have to do with muscle stiffness and contraction, what I was experiencing was indeed a tightening of the muscles in my forearm, which causes the hand and fingers to turn in. But this was not the stiff, rigid, and painful type of spasticity that I’ve heard our MS brothers and sisters talk about.

The words I’d use to describe this symptom would be:

  • A disabled look to my arm and hand
  • A sense of muscle atrophy
  • Restful, or “dumb” limb
  • A change to my limb’s natural resting position
  • A staggered starting line, like my arm and hand have to start from a place farther back from where they used to when I want to move them — yet another multiple sclerosis thing that looks different than it feels (or doesn’t feel)

I know that this type of spasticity is nothing like what many experience. For that reason, I ask all of you to explain your version of this symptom. It doesn’t always manifest in the same stiff or painful way for everyone, so the more descriptors we can put into the comments section of this blog, the more powerful resource it will be for those trying to describe what they’re going through.

So to kick off August, let’s share the ways you might explain MS spasticity.

Wishing you and your family the best of health.

Cheers,

34 Things I Wish Multiple Sclerosis Hadn’t Shown Me

On the occasion of her 33rd birthday, the writer reflects on the many ways the debilitating disease has highjacked her life, and the choices it’s forcing her to make.

It’s my 33rd birthday, so I’m reflecting. Perhaps like you, I’ve been in numerous weddings, and I’ve “liked” dozens of engagement statuses and new baby announcements. This is not an essay on those things, though. Not exactly. I’m coming to terms with choices I’ve made and didn’t make, the feigned ambivalence I’d give off about marriage and babies. At this age, I want partnership. I want motherhood. And at this age, I am concerned that it is too late for either. But this is not an essay on the regret one experiences in her thirties, either. Not exactly.

Nearly ten years ago, when I was 24, I’d just started graduate school. Things would fall out of my left hand inexplicably and it was difficult to walk sometimes. Just before Thanksgiving, I went in for an MRI that revealed I had lesions all over my brain and spinal cord. A few weeks later, right before Christmas, I was diagnosed with Multiple Sclerosis. The day of my diagnosis was normal: I had class. I went shopping. I told my parents. I did not rage. I lived my life like it was still mine to live. I didn’t think about the compromises I should have made. This is not an essay about being single in your thirties. This is an essay about the ugliness of sick. About the discoveries it forces upon you. Like these:

  1. At 24, I wore five-inch heels and walked everywhere.
  2. When I slump over, I can’t tell if its poor posture due to age or because my spine is becoming weaker. The image comes to my mind of my last infusion of Tysabri, when they wheeled a woman in curled up like a human claw. Her face didn’t look that old. She was adorned with pillows. I think, Is that my life?
  3. I don’t know exactly how many lesions there are in my brain; but I do know how many men there are right now with Multiple Sclerosis who make a name for themselves and their disease: Jack Osbourne, Richard Cohen, Montel Williams, filmmaker Jason DaSilva … and most recently, this guy who wrote about his recent diagnosis on the day of his baby girl’s first steps.
  4. Everyone told me to live my life as normal as possible. So I did, I have. And I am so alone in this normalcy.
  5.  Perhaps I will not die from MS but I will most certainly be alone in this. And that feels like a death in itself. I am terrified everyday
  6.  When I was diagnosed I went into a state of numb denial. I did the treatments, I made the phone calls, I spent hours on the phone contacting doctors, specialists, insurance agents. I thrived academically. I drank a lot. I looked good. I know this because everyone kept telling me so.
  7.  “First went the heels, then came the cane, then the wheelchair.” I’d started telling folks at school. Turns out a lot of people know someone who’s related to someone with MS. This person’s mother has it. She’s in a nursing home. She is not a senior citizen.
  8. After too many nights of unbelievable back pain, I bought my first pair of Danskos.
  9. At year two, I stop going to group exercise classes, because they keep the studios too warm.
  10. After year four, I notice a limp on my left side when I walk. I ignore it, but I notice it. I think, This has happened before. I know my body will start to compensate if it hasn’t already.
  11. Whenever I see Jack Osbourne or Jason DaSilva, both men around my age, I am not happy for them. I resent their happiness, their content natures when they thank their wives. I think, where are the women with this?
  12. When my left side gives out, I wonder how could I hold a baby? How could I change a baby’s diaper? I see my friends’ posts about their kids’ soccer games and outings and I think about how I wouldn’t be able to be outside for too long. I think about my imaginary child resenting me.
  13. “We tend to prefer 33, as the cutoff age. Things get … complicated after that,” is what the neurologist says about having children.
  14. I watch DaSilva’s documentary, When I Walk, and burst into tears when it ends with him and his wife, pregnant.
  15. By year seven, I cannot walk more than half a mile before collapsing. I can no longer run, period. I have the scars to show for when I’ve pretended I still could.
  16. The best and worst thing about being numb is that it is a temporary condition. Two things are inevitable: The numb part dies or wakes up.
  17. When I worked at Vogue, Anna Wintour said how the outfit starts from the shoes up. She’s right. That goes both ways. You stop caring as much when your feet look like bricks.
  18. The neurologist asks how I’m doing. She asks about my boyfriend, my last one. I say he’s no longer around. She’s quiet. She then happily tells me about patients who have children “on their own.”
  19. After giving birth, we are at risk for a relapse. I wonder if my partner will be there to help. Then I wonder about who the hell would want to be my partner. And the cycle of loneliness begins.
  20. I need these men with MS who are married with children and take the mic for the rest of us to recognize how spectacular their normalcy is.
  21. This December will be year ten. I work out alone at home where I can keep it ice cold. I haven’t worn heels in years. The last time I did, I looked drunk the way my left foot kept turning inward. I never knew how important a fully functioning big toe could be. My left hand has tremors, as does my face especially my eyelids. I take an anti-seizure medication for that.
  22. I wonder if I should have settled, if I should have latched on for dear life to any boy that would have me at the age of 24. And I did have a boy then. We tried our best. We failed. When we ended I listened to others, and to myself, that I was worth more. This is a disease, though, that changes how you define worth.
  23. There are plenty of women with MS who have children. I see them on our listservs, so many of them were diagnosed after having their children. Sometimes I wish I hadn’t been so thorough in finding out what was wrong with me at such a young age. Maybe I could have trapped someone.
  24. During the infusions, when they ask me if I’ve developed cancer in the past six weeks since my last infusion, I contemplate what I’d have to do if pregnant. I’d have to stop taking this medication but it’s okay because in pregnancy women with MS actually improve.
  25. On OKCupid, a guy asks if I’d like to go on a hike.
  26. Am I the only one who’s wondered why there don’t seem to be any female counterparts to these men?
  27. I have five pairs of Danskos. I wear them all the time and I hate them all. If I have a date, I wear my only pair of wedge heels and arrive early so I’m already sitting when he shows up.
  28. There’s a particular sense of urgency to my writing. Cognitive dysfunction and decline are signatures of MS and I don’t know if or when these will start, if they haven’t already. Writing is a way I tell the world I was here, I mattered. Please listen to me while I still have something to say.
  29. This July, I turned 33.
  30. The only famous women with MS I read about are the ones who have died or are murdered by their caretakers. Or Mitt Romney’s wife.
  31. I am 33 years old, single, childfree and I have an incurable disease that while not fatal kills you slowly.
  32. I was once a ridiculously beautiful woman. I still am. But I don’t know how to get anyone to notice when all I can muster is typing this letter.
  33. I’ve gained weight and I exercise and eat right but the truth is I am mostly sedentary. Many days the notion of walking to the bathroom is enough to exhaust me for hours. I think of the woman in the wheelchair next to me who described fatigue as this: “It’s not like you’re crossing the street and a bus is barreling towards you and you’re too tired to get out of the way. Fatigue means the very contemplation of a bus barreling towards you is enough to put you out.”
  34. There are certain things too terrifying to write.

29 Things Only Someone with Multiple Sclerosis Would Understand

You take your multiple sclerosis (Multiple Sclerosis) seriously, but sometimes you just have to laugh about it, right? Read on for a look at 29 things only someone with Multiple Sclerosis would understand.

1. Despite its name, you know that there is nothing romantic about the “Multiple Sclerosis hug.”

MS hug


2. Having “foot-drop” and walking through a dog park can be a messy combination.

foot drop


3. You know the “Swank diet” doesn’t describe the food on a country club menu.

swank diet


4. Crowds and loud noise make you want to flee.

Crowds and loud noise make you want to flee


5. MS makes you a logistics specialist: You immediately scout out the accessibility, parking, and potty situation of every new location.

MS makes you a logistics specialist


6. Rotating injection sites on your body is more important to you than rotating the tires on your car.

Rotating injection sites


7. Who the heck rock climbs and windsurfs like the people in Multiple Sclerosis ads?

MS ads


8. You know why the basket under a rollator collects as much junk as a purse.

the basket under a rollator collects junk


9. Your body decides to spasm the moment the needle pierces your skin.

Body spasm when given a shot


10. Taking a shower can be more tiring than it was getting dirty.

Taking a shower can be more tiring


11. You wish everyone wore a nametag.

nametag


12. You know the difference between an MS med’s flu-like side effects and the flu.

MS med’s flu-like side effects


13. You don’t just forget where you put your keys, but also where you parked the car.

You forget where you put your keys and where you parked the car


14. You hope the test of touching your nose and the doctor’s finger has some medical relevance, and isn’t just a practical joke.

touching your nose


15. The “retail squeeze”:  as your gait gets wider, the stores’ aisles appear to get narrower.

retail squeeze


16. Cutting one’s toenails is no easy task.

Cutting one’s toenails is no easy task


17. The chefs on television should try preparing a meal from a seated position.

The chefs on television should try preparing a meal from a seated position


18. This scooter is my lifeline, not your ATV plaything—so get off!

scooter


19. It’s easier to get a disabled parking placard than it is to find an empty disabled parking space.

Difficult finding disabled parking


20. During a game of hide and seek, you’re always the easiest to find.

hide and seek


21. When you see someone wearing orange, you immediately think “MS awareness,” not “crossing guard.”

Orange is MS awareness


22. The closer you are to the bathroom, the worse your urge is to go.

bathroom urges increase near restroom


23. You know that the nine-hole peg test is not something they sell in the gift shop at Cracker Barrel.

nine-hole peg test


24. “Fun in the sun” isn’t in your vocabulary.

beware of sun exposure


25. You’ve had so many MRIs, you can hum the melody of the pings and bangs.

MRI melody pings and bangs


26. You know you could never have a successful career as a robber, due to terribly slow getaways.

slow


27. When people stare at your cane, you tell them you came straight from tap class.

cane


28. “RRMS”, “SPMS”, and “CPMS” aren’t the sounds Grandpa makes sleeping in his chair.

RRMS SPMS CPMS


29. When someone tells you, “You look so good,” you wonder if they’re referring to you or that pan of lasagna.

confused