202 posts in the category “Multiple Sclerosis”

Wrapping up Seeing [MS]: The invisible symptoms

Posted June 1st, 2015 by

Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers:

“I’m burnt alive every day.”
“A single bead of sweat can bring me to my knees.”
“I can be struck down in just seconds.”

Over the past year, we’ve been featuring quotes, pictures and videos from the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about visualizing the invisible symptoms of MS and raising awareness for the neurological condition. We’ve covered nine symptoms: blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. If you missed anything, watch the video below for a full recap.

While there may be no more Seeing [MS] photographs, there will always be more symptoms, experiences and knowledge to share to help raise awareness for all things MS. There are more than 39,000 people living with MS on PatientsLikeMe, and many have contributed their own symptoms to the Seeing [MS] forum thread. If you’ve been diagnosed with MS, visit the community today. And a very special thanks to the patients and photographers whose hard work made Seeing [MS] possible.


Seeing [MS]: The invisible symptoms – numbness

Posted May 22nd, 2015 by

“When I woke up, my hands were gone.”

That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and there is a barrier there.” Listen to Adriana speak about her symptom below:

You are now seeing numbness

Photographed by Nicholas Walton-Healey
Inspired by Adriana Grasso’s invisible symptoms

Adriana worked with photographer Nicholas Walton-Healey to portray her numbness in a picture and video. Their work is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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Getting to know our Team of Advisors – Deb

Posted March 27th, 2015 by

You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana.

This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her. 

About Deb (aka ruby1357):
Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it.

Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms.

Deb on patient centeredness:
“I feel fortunate that, because of my work, I have been able to see clinical research from the perspective of both the patient and the researcher. I have worked with and for many organizations, researchers, and physicians over the course of my career, and I have found that, ironically, the patients themselves are often invisible in the research process. If patients are thought of as “cases” rather than as real people, and if patients don’t understand what is being done and why, then the research effort has lost what should be its central purpose.

The story of how I came to be diagnosed with MS illustrates some important points that I feel are related to patient centeredness and the work of PatientsLikeMe’s Team of Advisors.

On opening day of show season in 2009, I found for some reason that I couldn’t ride very well. Everything was off, and my body felt very strange. Embarrassingly, that day I received the lowest scores of my riding career! Days later, I found myself in the office of a neurologist, who off-handedly ran down a laundry list of differential diagnoses, ranging from a pinched nerve or Lyme disease (the latter is common among horse people) to Parkinson’s or multiple sclerosis. After weeks of anxiety and a multitude of tests, the same doctor casually informed me over the phone that “it looks like you have MS.”

At age 52, I couldn’t believe my ears, especially since my ex-husband had been diagnosed with MS many years before, very early in the course of our marriage. Back then, there wasn’t an MRI machine around every corner. It took 5 years after his first attack for him to be diagnosed. At that time, I was working for a major medical specialty organization, so I went to the library (no one had computers yet) and found everything I could about MS. Then we both started reading. At a time when the official slogan of the MS Society was “MS: The Crippler of Young Adults,” we learned that having MS didn’t mean you would necessarily end up in a wheelchair. The information we gathered reassured us. He went on to lead a totally normal life during the 10 years of our marriage.

I see these two incidents as related in very important ways. Having accurate information about MS kept my ex-husband and me from fear and despair. And the casual manner of the neurologist who gave me the MS diagnosis served as a perfect example of how NOT to interact with patients. Both incidents relate to how important it is for both researchers (who publish their results, which eventually may make it into patient information materials) and clinicians (who should take into account how it feels to be on the other end of the conversation) to keep the “end user”―the patient―at the forefront of everything they do.”

Deb on being part of the Team of Advisors:
“Being a part of the ToA has been a profoundly rewarding experience. I have made friends that I know I will keep once our terms are over. Like my colleagues on the ToA, I am deeply grateful to have the opportunity to be heard, without condescension, as a person experiencing a disease and its effects, and to have an opportunity to have a say in how research is conducted.

PatientsLikeMe has as its mission nothing less than changing how research is conducted, and I am excited and honored to be even a small part of that. There is a long-standing divide between the researchers who conduct clinical trials and the practitioners who provide health care to patients. Too often, patients are lost in the middle. The research/clinical divide has long needed a third party to bridge the gap. That third party is the patients themselves. By starting at this common ground—the patients whose lives are affected by both research and clinical practice—PatientsLikeMe is making important strides in bringing together these traditionally divided camps for a unified purpose: to better the health and quality of life of real people.”

Deb on MS research:
“Like my fellow Advisors and PatientsLikeMe itself, I believe that much can be learned from patients’ experiences, and this information should be used to design research studies. My own experience serves as an example of this.

In the weeks and months after my initial diagnosis, I found that movement was vitally important. MS is, after all, a movement disorder. My fellow horsewomen rallied to my side, lending me their quiet mounts to ride until my symptoms abated and I could safely ride my own high-spirited (to put it politely!) mare again. Those women―and the horses themselves―kept me moving.

When my current neurologist first met me, she told me that, having looked at my MRIs before our visit, she was amazed at how well I was doing. Although I don’t have scientific evidence for it, my belief is that my riding has kept the disease from progressing further than it has.

This is an example of how patients’ experiences can inform research. To date there are maybe a dozen studies on the effects of sustained physical exercise on MS disease progression. There need to be more clinical trials in this area, as well as in other chronic conditions, that are based on patients’ actual experiences. Those experiences―though anecdotal―are a treasure trove of possible study questions for clinical research.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

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Hacking our way to new and better treatments with integrated biology

Posted March 13th, 2015 by

When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments for patients today. We need to ask what are the best ways to generate actionable evidence that can benefit patients, clinicians, payers and regulators.

We need to take an integrated approach to biology and treatment discovery.

Large-scale approaches like genetics, the biome, metabolomics, and proteomics are coming down in price faster than the famous Moors law that has driven computer improvements. These tools are beginning to allow us to understand the biological variation that makes up each of us. This is the technology I used at ALS TDI; the organization I founded, to help learn about the early changes in ALS. This emerging technology needs to be met with well-measured human outcomes.

PatientsLikeMe is working to build that network. Our goal is to be a virtual global registry with millions of individuals sharing health information, translated into every language and normalized to local traditions fully integrated into the medical system so it’s part of care and incorporates information from the electronic medical record, imaging, diagnostics and emerging technologies for interrogating biology.  We are doing this because to understand the biology of disease we needed to understand the experience of disease with the patients as true research partners.

This isn’t just about integrating biological methods to forge discovery. You can’t just consider the science; you also have to consider the person. No two health journeys are exactly the same. With integrated biology, you have to look at the whole person: their social interactions, socioeconomic status, comorbities, environmental impacts, lifestyle factors, geographical location, etc. To accurately model a condition like ALS, or any of the other 2,300 conditions that PatientsLikeMe members are living with, we need to understand everything that can impact progression. We need to use those real-world patient experiences to inform and improve the drug discovery process.

There is much that needs to be solved to move from our current siloed approach to the integrated one and we have had the privilege of being involved in one of the most innovative. Orion Bionetworks brought together leaders from across the MS Field to develop an integrated model of the disease and they are now moving forward with an even more ambitious project.

They’re using computational predictive modeling to bring together different scientific methods and big patient data to find treatments that work and biomarkers that measure them to the people that need them faster. Said differently, they are hacking their way to treatments, because that’s the only way it’s going to work.

They’ve already got a validated model: Orion MS 1.0. And now they want to develop a new Orion MS 2.0 model. Learn more about their #HackMS campaign and how you can help.

We are highlighting Orion here because what they are doing is so innovative and worthy of support. I donate to ALS TDI, the institution I founded, because I believe in the mission and their approach. I also have donated to Orion because if we need to do anything in discovery we need to support the people that are trying to do it differently. What they are proposing is so innovative and powerful in its scale that it has the potential to redefine how we understand and treat MS. That’s why we are partners with them and it’s how we meet our responsibility to our MS patients to use their data for good.

PatientsLikeMe member JamesHeywood

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March is Multiple Sclerosis Awareness Month

Posted March 9th, 2015 by

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month.

What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1

Did you know that there are four different types of MS? Each one affects people a little differently.

  • Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases.
  • Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women.
  • Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients.
  • Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses and a clear progression of symptoms.

So now that you know more about MS, what can you do to help raise awareness? Here are just a few of the ways the MSAA recommends:

  • Read one of the MSAA’s publications, including the recently published annual MS Research Update, which includes the latest developments in MS treatments and research.
  • Find and attend one of the MSAA’s educational events for people with MS and their care partners.
  • Register for Swim for MS, which encourages volunteers to create their own swim challenge while recruiting online donations.
  • Check out the Australian MS Society’s Seeing [MS] campaign, which features MS patients and photographers working together to visualize the invisible symptoms of MS.
  • Share on social media using the #MSawareness hashtag and MSAA profile badge.

If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts, or join more than 38,000 people with MS at PatientsLikeMe.

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1 http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic


Seeing [MS]: The invisible symptoms – brain fog

Posted February 23rd, 2015 by

Australian Jessica Anderson has been living with multiple sclerosis since she was 12 years old, and she says brain fog is the scariest symptom she experiences, especially not being able to gather and make sense of her own thoughts. During her worst moments, she can barely focus on a thought for more than 30 seconds. Listen to Jessica speak about her symptoms below.

 

You are now seeing brain fog

Photographed by Sara Orme
Inspired by Jessica Anderson’s invisible symptoms

Jessica and New Zealand photographer Sara Orme worked together to visualize Jessica’s brain fog, and her video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Posted January 21st, 2015 by

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

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Seeing [MS]: The invisible symptoms – fatigue

Posted January 15th, 2015 by

“It’s like I’m deflated. I don’t feel like doing anything.”

That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly under siege.

 

You are now seeing fatigue

Photographed by Juliet Taylor
Inspired by Darcy McCann’s invisible symptoms

Darcy worked with award-winning photographer Juliet Taylor to capture how he feels when enduring bouts of fatigue. His video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Seeing [MS]: The invisible symptoms – dizziness

Posted December 8th, 2014 by

Lyn Petruccelli is living with multiple sclerosis, and she fights random waves of vertigo and dizziness that can strike her at any moment. Sometimes, the feelings are so strong, she can’t even get out of bed. As Lyn says, “I can’t see it coming, and that makes it hard to fight.”1

 

You are now seeing dizziness

Photographed by Louis Petruccelli
Inspired by Lyn Petruccelli’s invisible symptoms

Lyn’s husband Louis is an accomplished photographer, and they worked together to visually portray what it’s like to live with the possibility of dizziness every day. Their photograph is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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1 http://www.seeingms.com.au/ms-stories


Seeing [MS]: The invisible symptoms – spasticity

Posted November 24th, 2014 by

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.

 

You are now seeing spasticity

Photographed by Matt Hoyle
Inspired by Tim Ferguson’s invisible symptoms

He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts.

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

Posted November 19th, 2014 by

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below.

What went through your mind when you were diagnosed with RRMS back in 1994?

I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life.

It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community?

I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that is experienced in doing home safety and accessibility evaluations come work with you in your home to see what your abilities and limitations are so he or she can make proper recommendations. I advise that people not wait until modifications are absolutely necessary before making them. I’ve been guilty of that in many regards, including waiting too long to get a power wheelchair. I should have gotten one sooner. It would have expanded my ability to go places and do things.

We saw some pictures on your photoblog of you in physical therapy – is that a daily routine? How does it help you manage your symptoms?

I was getting in home PT 3 days a week for a few months after suffering a seizure that prevented me from driving for several months. The PT is of course not a cure for MS, but it does provide exercises and strength training options that can help you maintain some abilities. When you’re sitting in a wheelchair all day, I think you can lose some function not just from the MS, but also from being sedentary, so it’s important to exercise.

Can you tell us about your daily meal set-up? 

I have a pretty simple daily meal routine. I often eat the same things day after day. For breakfast I eat some yogurt, a multigrain type bar and a banana. That rarely changes. Lunch is almost always a sandwich (some kind of meat and cheese along with some mayo) and a piece of fruit, maybe an apple, pear or peach. Dinner varies a little. A friend who lives here with me often makes a pretty bountiful garden salad that includes lettuce, spinach, beets, carrots, broccoli, cauliflower and more. Sounds good huh! In addition I’ll eat something else like canned soup, a bowl of cereal, maybe a pre-made Indian dinner that I like. Almost all meals are eaten on my wheelchair tray.

Your photoblog takes viewers through a day in your life – what inspired you to give back to others and raise awareness for MS?

I’ve been a long time volunteer with both the National MS Society and the Myelin Repair Foundation. I had never really done much volunteer work prior to my MS diagnosis. After I stopped working full time I didn’t really do much of anything productive with my time. It was actually a girlfriend who suggested contacting the MS Society to see if they had volunteer work I could do. They did, and I caught the volunteerism bug. I would recommend it to anyone. I often say that doing volunteer work is as beneficial and rewarding to the volunteer as it hopefully is to the people you’re volunteering to help.

Not everyone is as open about their personal experiences living with MS as you. What was it like working with the photographer and putting yourself out there?

I guess I’m kind of an open guy. After meeting Ted (the photographer) I felt comfortable with him and trusted him. I decided pretty much right away that I was going to be all in on this project. I figured if you’re going to do something, do it right. We hoped to have an impact with the photo essay, and only being half in so to speak wouldn’t do the job. I didn’t really do anything other than let someone take pictures of me doing things I normally do. I know Ted was amazed at how open I was. I didn’t really feel like I was doing anything all that amazing.

Photos courtesy of TGoldmanPhotography.com

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