204 posts in the category “Multiple Sclerosis”

Going global for World MS Day

Posted May 31st, 2017 by

It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say:

 

 

“MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as paradise on earth. For me living with MS is like dying every second in my crippled life. Imbalanced walk in MS really sucks. Shaking of arms or very poor pen grip in my hands makes me feel pity on myself. I don’t think that staying positive works. I had to leave my engineering studies and a government job because of it. Unfortunately, I can’t let others feel what I or my body feels for myself. I can’t afford the life-long treatment for an incurable disease like MS as I’m an idle cripple.”

 

“I am 50 years old and live alone with severely advanced SPMS. While my MS has progressed very quickly, since I have accepted I need care 22 months ago, the government has been EXTREMELY slow to catch on how desperately in need of care I am. I have [had] to fund most of my care in order to stay out of a nursing home, and tearing through my savings at a terrifying rate. You are living in Australia when you are paying taxes, but somehow living in a third world country when you are disabled. Neglect was not what I expected from MY country, and I feel ashamed of Australia.

There is no problem with people’s attitude towards disabled people, except of course, they can be totally naïve about what they can’t see – so being in a wheelchair and looking normal, they are likely to think your only problem is your legs. Stays in hospital for non MS conditions is a nightmare – inadequate staff, lack of equipment for the disabled and very poor knowledge and understanding by staff. You are a ‘fish out of water’ and not catered for.”

 

“Life with MS in the US is a challenge but not without its upsides. If you have to have an advanced form of MS that makes you stand out to innocent bystanders (an abnormal walking gait, dependence on mobility devices, a noticeable tremor, etc.), you may as well have it in the United States. Despite drawing reactions from generous & heartening to pitying, hostile or demeaning, the only unconquerable obstacles to leading a totally fulfilling U.S.-based life with MS would be the ones in your own head and heart.

My two biggest “life hacks” for living with MS in the U.S. have been: (1) equipping myself with a seated Segway: puts me at the same height as the people I’m “walking” with, eliminating the social barriers to conversation; and (2) perfecting techniques for ‘teaching’ able-bodied others how they can respond to my disability in more respectful and productive ways.”

 

“I think that living with MS in Italy is like everywhere else. If you are able to manage the disease, you can live in any part of the world. Of course, social care is important. In Italy, under the National Health System and Social Care System, depending on the severity of the condition, people with disabilities may receive free medications, diagnostic tests and aids such as a wheelchair, cane and diapers. As the National Health Service has become more and more privatized and run like a business, care isn’t properly delivered and the system does not work has it should. Personally, I stay away from hospitals, doctors and so on.

Disabled people are entitled to a reduction in Value Add Tax, from 22% to 4%, for items such adapted vehicle, or to adapt the house. In Italy, there are naturopaths and many traditional medicine doctors who follow a holistic approach. The historic town centers that make Italy beautiful have plenty of architectural barriers, but there are more and more improvements. I think Italy is a good place to heal.”

 

“There’s very little MS in Mexico so [doctors are] very interested in my previous treatments, how effective they are and how I manage my own illness. Seeing doctors in Mexico is very affordable. If I can’t get to a doctor, they will come to me for a modest fee of $20.00. There’s no time limit on how long my appointments are. They spend as much time with me as they think necessary to get a complete understanding of my medical issues.

I haven’t experienced any stigma associated with my illness. On the contrary, they’ve all been understanding of my limitations and very helpful. I never have to wait to see a doctor. Can see one the same day that I need to. They go out of their way to accommodate their patients. I’ve lived in Asia, the Caribbean and Mexico and have gotten treatment. The best medical treatment I’ve ever gotten has been in Japan and Mexico. Overall, I love the medical [care] I get here in Mexico. I still have to see a primary in the US once a year. I have an awesome doctor, dentist and therapist here in Mexico that I wouldn’t trade for anything.”

 

“My MS journey began in 1993. I experienced minimal symptoms for 8 years but then a progressive loss of mobility over the last 16 years leaving me wheelchair bound at 67. I am however fortunate to live in Australia which has the reputation of having one of the best systems of medical care in the world provided by the Government’s Medicare Scheme.

In addition to Medicare, Private Health Care [coverage] is available albeit at a cost. Government also [subsidizes] the majority of MS treatments/drugs, which most people would be unable to fund themselves, and has recently introduced a National Disability Insurance Scheme for qualifying Australians. Having lived in Fiji and Papua New Guinea for 9 years during the early 2000’s and continuing to travel world with the help of my husband, it is not hard to state that Australia provides some of the best medical and physical facilities for disabled people.”

 

“I moved to St. Croix from Maine 10 years ago after vacationing here for about 40 years. As it’s an island most everything costs more because it’s shipped here from America. We have a Government-run hospital that struggles to provide basic healthcare due to meager funding and uncompensated care and a lack of specialists. There is access to neurologists. Private health insurance isn’t available unless provided by an employer. In my observations, there is little stigma associated with having a chronic disease or being disabled on St. Croix. The people are generally kind, helpful and friendly. Strangers are always willing to help with doors, reaching or picking items unlike my experience in my home State of Maine.

For me the climate, culture and my little house is nearly perfect for being outside and trying to stay active as I move like an old stick man and have more pain in temperatures below 50* F. The life hack moment that I experienced about a year after I was diagnosed generated from the thought, “If now now then when?” Being in “the now” became my focus. This led to moving here, getting a job and living with being bigender. My biggest challenge aside from negotiating the 300-year-old streets and sidewalks is to actively be as healthy as I can. I eat a plant based diet, exercise, and use alternative treatments like meditation, Ayurveda, Medical Cannabis and avoiding stress.”

 

 

“Having MS is difficult. As one’s mobility and senses get affected, it gets a bit challenging to move around independently, going to work and just keep one’s morale up. But with all of this, one thing in particular that I’ve noticed in my case (I’m a working professional in Mumbai, one of the most populous cities in India) is that, people everywhere are extremely sweet, polite and courteous to me. Which is really helpful as India has a lot to do (in terms of facilities and policies) to become more sensitive to Differently Abled People (DAP). But the helpful attitude of people more than makes up for lack of facilities.”

 

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“There were so many people asking the things that I was too afraid to ask”

Posted May 15th, 2017 by

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness.

A jarring diagnosis

“Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.”

The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help.

A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI.

“This all took place within a 48-hour period and I had my diagnosis immediately.”

 

Coming to terms with her new normal 

“To say I was stunned would be a gross understatement. My only prior knowledge of this illness had been of my maternal uncle and his hard-fought battle with MS, which he lost while bed-ridden to pneumonia 25 years earlier. I was terrified.”

Jackie, a mother of three children over 15, was grateful that she could rely on her family for support, but still worried about her future and the future of her family.  As an active woman who enjoyed downhill skiing, boating, working in the yard or just tending to her family business, she worried.

“What would this mean for me?  For us as a couple?  Would I be in a wheelchair soon or bedridden young as my uncle had been?  I was only 44 years old and my husband and I had so many plans…so much life ahead of us. What would life be like now?”

Treatment challenges

Following the advice of her neurologist, Jackie began having monthly IV infusions of steroids After 15 to 18 infusions, Jackie thinks that, though an infusion of steroids may help hasten the duration of a relapse, she came out of it with additional bone damage.

“My bones and teeth have been weakened to a point that I am best described as “Humpty-Dumpty” if I were to ever foolishly attempt to ski and fall or merely slip on the ice in my own driveway.”

Jackie began taking a disease modifying drug (DMD) called Rebif that caused flu-like symptoms that severely impacted her quality of life. One week after starting the drug, she experienced full anaphylaxis.  Jackie’s daughter found her unable to speak or breathe properly, requiring an emergency trip to the hospital.

She also tried Copaxone. Since she was still relapsing and paying out-of-pocket, (Jackie lost her insurance because she has a pre-existing condition) the price of $3,500 monthly just didn’t seem prudent.

Finding hope in the forum

“PatientsLikeMe is invaluable to me. I’ve learned everything of value about how to come to terms with (early on), live with and manage my illness through the people I have met here throughout the years. I’ve made some wonderful and lasting friendships and met many in person. I continue to communicate with several on a regular basis both on and off the forum.”

With an overwhelming diagnosis, difficult symptoms and frustrating treatment experiences, Jackie wanted to connect with others who were experiencing the same things.  For Jackie, finding PatientsLikeMe changed everything about her life and how she views herself and her illness.

“There were so many people asking the things that I was too afraid to ask and the number of replies were staggering. I felt like I had finally found a place that I could really belong.”

Jackie found more than social support in the forum. After seeing a photo of a strange red line moving from Jackie’s foot to her calf, and thinking it might be MRSA, lady_express_44 (whom Jackie considers to be the guru of all things medical) encouraged her to go to the hospital immediately. It was MRSA and Jackie’s doctors told her she could have lost her lower leg.

Taking back control

 Being diagnosed with a chronic and progressive illness is perhaps one of the most daunting things that can happen to a person. It’s frightening and for good reason. Jackie’s advice?

“Don’t waste time worrying about things unknown and make your best effort to live for today. Take charge of your illness and make the very best possible decisions for your health. We must advocate for ourselves and our future.”

Jackie also advocates for connecting for connecting with others, especially on a web site such as PatientsLikeMe where there are so many wonderful and knowledgeable people to share their experience and expertise.

“It has made a monumental difference in my life and I believe, the course of my illness. I don’t view my MS as an end to anything but rather as something I simply have and something I’m managing to live with. It truly isn’t who I am, but rather just one more aspect of my being.”

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Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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Meet John from the PatientsLikeMe Team of Advisors

Posted December 15th, 2016 by

Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors.  John is a musician, husband and father of four. He’s also living with MS.

For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.”

What gives you the greatest joy and puts a smile on your face?

What gives me the greatest joy and puts a smile on my face is knowing that I helped someone.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I have described this condition by comparing it to a frayed electrical cord with the inability to properly transmit the energy required to execute a function. Or, think of having MS as your computer’s hard drive sending a program execution but due to corrupt transmission lines/data paths, it needs to take additional time to map an alternate route to obtain the information and/or activate the desired program/effect.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

One piece of advice I would offer to someone newly diagnosed with a chronic condition is: If you’ve been diagnosed with a chronic disease, it’s chronic and not necessarily fatal. Learn as much about the condition and include at least one person in this learning to serve as a buddy and/or support.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been incredibly important to me to find others living with the condition and who may be able to relate to what I’m going through. Their insights, struggles and successes have proven to be invaluable; it reinforces that I am not alone.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I have often had to advocate for myself with my insurance providers; needing to articulate the need for coverage of a procedure or medication as those items were critical to my ongoing care and health stability.

What made you want to join the PatientsLikeMe Team of Advisors?

I see the opportunity to join the PatientsLikeMe Team of Advisors as the chance to learn, give, and make a difference in the lives of individuals around the globe!

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

The PatientsLikeMe community has been a source of reference, strength, and encouragement for me as I cope with the diagnosis given me.

If given the opportunity to participate in efforts to change something which would transform how the current healthcare system is implemented and designed, what would it be?

I would work collaboratively with government (legislators/representatives), pharmaceutical and insurance companies and the medical community to transform methods for the delivery of care to persons with chronic disease diagnoses and other long term health illnesses. The goal being to streamline, reduce the need for repeated/duplicative procedures, create a system that “speaks the same language” across all platforms, and delivers timely services to each patient (“tailor made” care).

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Meet Jim from the PatientsLikeMe Team of Advisors

Posted December 1st, 2016 by

 

We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development and change management consultant.

He sat down with us recently to talk about finding appreciation in the “upside-down” reality of life with MS. Below he shares his experience advocating for himself and how he built a strong relationship with his doctor.

What gives you the greatest joy and puts a smile on your face?

Family moments.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Mobility challenges limit what I can do/where I can go. In the U.S. things are pretty good; overseas, people tend to recoil from any appearance/behavior that strays from the “norm.”

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

MS produces a wide variety of often invisible but strange and obtrusive sensations and symptoms that aren’t described in the owner’s manual that came with your body. Creates a new normal and a new sense of reality, and makes life a bit like being an undercover spy.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Take a deep breath. Learn what you can about the condition, but mostly keep your head about you: don’t allow the shock to drive you crazy and/or make you feel that things are worse than they actually are. Learn to appreciate the upside-down ways in which it can help you focus on what’s REALLY important to your quality of life, and take an interest in the unusual ways in which your body can change from day to day, even moment to moment.

How important has it been to you to find other people with your condition who understand what you’re going through?

Actually, this hasn’t been very important for me. I’m much more interested in how the things MS makes me experience give me new/unusual perspectives on life and relationships that others can learn from.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

The oncologist who diagnosed my Chronic Lymphocytic Leukemia was highly recommended to me by my GP based on his clinical expertise. But he came initially across to me as arrogant, cold, in a hurry, and not the least bit interested in helping me absorb the news emotionally. At the beginning of our second appointment, I took him aside, praised his clinical expertise, insisted that, even so, we could only proceed together if he listened to something I had to say, and then — after he signaled his willingness to hear me out — described the kinds of interaction/treatment I would need him to work on if he wished to continue treating me. Over the next several months, I “taught” him how I wanted him to interact with me; he worked at learning, and we eventually became good friends.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It has alerted me to possible new treatments and mobility solutions.

How well does PatientsLikeMe communicate its mission and activities to members and stakeholders?

I somehow missed some of the most unique and valuable things that PLM brings to the table, so I’d like to see the Team of Advisors work with PatientsLikeMe staff to enhance and clarify PatientsLikeMe’s messaging.  

How should PatientsLikeMe make the most of its Team of Advisors? 

A lot more could/should be done to set the Advisors up as a true TEAM (as opposed to a collection of individuals serving as sounding boards) who adopt and pursue their own projects in collaboration with PatientsLikeMe leaders/staff to undertake valuable enhancements to the site and its patient community that might not yet be on PatientsLikeMe’s radar.

What made you want to join the PatientsLikeMe Team of Advisors?

I have personally benefited from interactions with PatientsLikeMe members but also have observed ways in which the site could provide better support and more reliable information. Also, numerous family and friends have harped on how much they admire how I handle my various conditions: I figured the Team of Advisors might be an opportunity to see if I actually had anything to offer that might be of value to other patients.

 

 

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


“Listen to yourself.” Member Daniela opens up about life with MS and psoriasis

Posted October 13th, 2016 by

Daniela (DanielaO) is living with multiple sclerosis and psoriasis  in Puglia, Italy, and loves crafts, art history, music and traveling. She recently opened up to us about getting her first diagnosis at age 14, managing multiple conditions, and how connecting with others on PatientsLikeMe makes her feel “present and part of a whole.”

Here’s what she had to say about reinventing herself and finding support from others who understand.

Tell us a little bit about yourself. What’re your hobbies and passions?

Ciao, my name is Daniela, I am from Tuscany and live in Puglia, Italy. I like traveling, seeing new landscapes, meeting people and learning about their cultures. I studied Fine Art and I love to make things with my hands. I am passionate about crafts, art history and music, particularly baroque.

What was your diagnosis experience like?

At the age of 14, I had psoriasis. My skin became like a map of red spots. Very stressful. On turning 20, I was diagnosed with Graves-Basedow, as my thyroid was not working adequately. Big stress. I was 39 years old when Miss Multiple Sclerosis came to visit me. Very distressful, especially as I was bringing up two children on my own. Now I am aware that these diseases are caused by immune system dysfunctions.

How has life changed since your diagnosis?

Having psoriasis, prompted/pushed me to try to understand why. The first book I read about healing was The Doctor Himself by Naboru Muramoto. Since then I learned many things about foods’ properties, how the quality of my thinking and emotions can modify the chemistry in my body. I did seminars learning why and how to maintain a healthy gut. I believe therefore that, mentally, I am responding well. Of course, there are really bad moments, but I’m so happy when they leave.

In the forums you talk about “reinventing” yourself, how has that helped you cope with your MS?

Because of MS, for several years I studied the Method Feldenkrais and became a Feldenkrais teacher. It has been a big challenge for me: Method Feldenkrais is about body movements, “talking” to the nervous system. It increased the awareness of myself and the world around me, more confidence and strength.

You mentioned that being on PatientsLikeMe makes you feel less alone and more curious – how has it been for you to track your health and connect with others on the site?

Multiple sclerosis symptoms are like the waves of the sea, they come and go and are never the same. Made of so many tonalities and degrees. At the moment, keeping a record of my health helps me a little. To be connected with others is very helpful. I live in a gorgeous place in the countryside, but this means I am cut off and isolated. To be able to interact with people who can understand me, makes me feel present and part of a whole. Of course, there are Italian forums, but I like to go far…

What advice can you give others with MS?

Just one, easy advice: Listen to yourself. I do have very special advice for those affected by psoriasis: find a doctor who knows Doctor Coimbras’ Protocol and ask about taking high doses of vitamin D3. I started taking it for MS since April 2015, after few months my psoriasis disappeared. After 40 years I was finally free of it. This is a great achievement. Thanks, Team at PatientsLikeMe, for giving me this great opportunity.

 

 

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Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

Posted September 19th, 2016 by

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago.

The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”  

Tell us a little bit about yourself. What was life like before your diagnosis with MS? 

Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish).

We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS diagnosis experience like? 

In early 2006, a random tingling in my legs appeared as I was waiting to cross a road, and did not go away. Occasionally, I would fall over when walking, or accidentally go to the toilet in my pants. I was very confused about what was happening to me. After a few months, my NHS doctor referred me to a consultant who said it could be the first sign of MS. He said I could get tested, but if it was MS there is no treatment. So I chose to not be tested.

Since MS, how has life changed? How have you, as some members say, adjusted to your “new normal”?  

It has taken some time, but I have adjusted to my “new normal.” My wife, family and friends also adjust when I am with them. I make sure I plan any activities in advance, pack a change of clothes just in case, go to the loo before I go out, plan routes, pack my own food. I have occasional challenges, but I am now happy again.

On your PatientsLikeMe profile, you mention that for the past three years you’ve been following a program called “Overcoming Multiple Sclerosis”(OMS), founded by Professor George Jelinek, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne. How does this program work? How has it changed the way you manage your MS? 

The OMS program has three core parts. First, I adjusted my diet to reduce my daily saturated fat consumption to 10g or less. It’s a vegan, whole food diet plus fish and Vitamin D.  I also exercise for half an hour, five times a week. And finally, I meditate for 30 minutes every day. I started slowly with a few minutes a day, gradually building up to 30. Now I generally do my 30 minutes when I need to rest, or during my train commute to work. Mindful meditation now goes quickly, it resets my body and I feel great after!

What can you do now that you couldn’t do before? What are some challenges that remain?

Mental – I can smile honestly. A few years ago I was scared and confused about what was happening …my slow but steady loss of ability and independence. I lost hope and found myself in a dark place. Nowadays, since following OMS, I can enjoy life, be optimistic and look forward to the future. I can make friends and family happy. People often tell me they are inspired by my positivity.

Challenges – occasionally I am still overwhelmed by MS and how it can affect everything the body and brain does, but I have found this usually means I have not had enough sleep!

Physical – I can walk further, more strongly. From 2006-2014 my walking slowly deteriorated until I lost confidence, was constantly using a walking stick and avoided going out. OMS gave me the confidence to exercise, build strength and try walking without my walking stick. Astonishingly, it eventually worked! I still use my walking stick sometimes, and if I have a day of exceptional long walking or physical effort I may use a wheelchair the next day (but these are very rare occasions). On a good day I will fold the walking stick and put in my rucksack. On a really good day I will leave home without my walking stick at all!

Challenges – I definitely still have physical limitations. I am sometimes frustrated that I struggle to carry a shopping bag and cannot run, but I keep practicing … it will come one day!

Toilet – I have more control and confidence than I have had for years. That is in part from experience and better management, but fundamentally things work better than they used to.

Challenges – Accidents can happen if I have not taken precautions, but this is very rare.

Neuropathic pain – 18 months ago I would wake up every night, literally screaming from pain in my left arm. My neuro prescribed Amitriptylene , which stopped this neuropathic pain. OMS has given me the confidence to carefully reduce the dose. I have not taken any for 13 months now and have no pain.

Brain fog – My brain is generally clear, and I have more confidence in it.

Challenges – Remembering to take things slow.

Diet – I am enjoying varied, delicious meals every day. My ability to taste is much better since following OMS…I can even recognize the difference between rice cakes!

Challenges – going to a restaurant used to be a challenge, but I have found restaurant staff and chefs are very happy to help if I ask them to make changes to the meals to be OMS-friendly.

Friends – I have made loads of friends who have MS through OMS. We are all helping each other. In a funny way, since finding OMS, I am actually happy because of MS.

Challenges – Time!

It looks like you’ve reported taking Baclofen on your PatientsLikeMe profile. How has the combination of taking a prescribed treatment along with following the Overcoming MS program holistically impacted your health outcomes?

I have had Secondary Progressive MS (SPMS) since the beginning of my MS nearly 10 years ago. There is no medicine for SPMS, just Baclofen to reduce muscle spasms.

My neuro told me to take Baclofen as/when I need, so I don’t have a set amount. I am quite relaxed with it but try to take as little as possible — these days I typically take 10-40mg/day. I went through a phase of not wanting to take Baclofen, but that simply resulted in me shaking more, so it was visibly apparent that I need it!

18 months ago I took Amitriptylene to reduce neuropathic pain, which worked and it was amazing, but I reduced that and eventually stopped completely soon after I went on an OMS retreat.

OMS has helped me understand that medicine is fantastic when it is needed, but you don’t necessarily have to use the medicine forever. (Of course discuss with your doctor).

OMS has given me a way to help myself, without waiting for SPMS medicine*. So whilst I am ready to accept medicine, I do not rely on it. Baclofen reduces my spasms — an important, but limited function. OMS diet, exercise and meditation makes me feel healthy, proactive and positive and enjoy life. Another great thing about OMS is that it also gives my family and friends hope, because they can see me being healthy and happy. I feel like I can overcome the challenges of MS!

*I am actually also on the MS-SMART trial, taking a small dose of medicine/placebo.

Other than this program, what else do you do to manage your MS? How has regularly tracking your symptoms on PatientsLikeMe helped? 

Tracking my symptoms on PatientsLikeMe has been great to see how I have improved over time. It was great when I showed my wife my PatientsLikeMe graphs and she saw my entries were honest (she remembers the bad days I had in the past, so she knew I was completing it truthfully). She was really happy to see my improvement.

The PatientsLikeMe network is fantastic, and I have been lucky to receive some good advice from others in the network. Occasionally I am even able to help with someone else’s question. It feels so nice when someone reads my post and ‘likes’ them. MS can be lonely, but the PatientsLikeMe network connects me with others who know MS from the inside — it ensures I do not feel alone.

What’s your best piece of advice for other MS patients? 

Have hope. Follow OMS —it is not an instant fix but the worst that can happen from OMS is that you eat a healthy diet and make friends!

 

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How MS affects pregnancy — from our partners at MotherToBaby for MS Awareness Month

Posted March 14th, 2016 by

It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below…

MS: The Diagnosis That Doesn’t Mean Missing Out On Motherhood

By Neda Ebrahimi , Teratogen Information Specialist, Motherisk

As a counselor with Motherisk, the Canadian partner of MotherToBaby and a service of the Organization of Teratology Information Specialists (OTIS), I hear many stories from women about pregnancy. Some of those stories strike cords with me. Their urgency and desire to make the healthiest decisions possible for their future children is both understandable and admirable. In honor of National Multiple Sclerosis Awareness Month, I give you Nina’s story.

Nina’s Story

“I’m 31 years old, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), when I was only 22. My first relapse was scary. I was writing my finals, and 2 days before my last final, I lost sight completely in one eye, and my legs felt so week and wobbly that I couldn’t stand even for a second. After going to the hospital and receiving several courses of steroids over 10 days, I started to improve but it took 2 months for my symptoms to fully resolve. And then, everything went back to normal, as if nothing had ever happened. I received my diagnosis several months after, and it felt like a death sentence. I had 2 more relapses before my doctor put me on disease modifying drug (DMD), and I started with Infterferon-B1a. Over the last 8 years, I only experienced 5 more relapses. The last relapse I had was only a few months ago; I lost sight in my left eye, and numbness that ran from my face to my toes on just the right side of my body. I have always been able to work full-time except when I’m experiencing a relapse, for which I’ve had to take a month off. I am a dentist, so not surprisingly I can’t carry out my job when I’m experiencing numbness in my hand. I met John 5 years ago at the MS clinic I used to visit. He was a nurse there. We fell in love, and despite of my illness he proposed to me last year, and we talked about having a family, with two children, hopefully one boy and one girl, and living happily ever after. It didn’t initially worry me that one day I may want children. John is crazy about kids, and I feel my maternal instincts kick in every time I hold a baby. Since we got married, my anxiety has been increasing proportionally to my yearning for having a child. I know my MS can’t be cured, at least not now, I know it can get worst over time, and eventually I may need support to carry out even simple tasks. Or Maybe I won’t, and I would be one of the few who never enter the progressive state. I don’t know if I’ll be able to care for a baby and meet his or her demands. What will happen after my pregnancy? I really don’t want to experience another relapse after I deliver. How am I going to manage my illness, and what will happen if I need to came off my DMD when I’m pregnant or breastfeeding? There are so many questions, and I don’t know who to turn to.”

Nina is not alone in her thirst for answers. MS is an autoimmune neurological disease with very different presentation. No two MS patients are exactly the same and symptoms can vary from just the occasional mild tingling in the finger tips to more severe symptoms that render the patient unable to walk or stand for several weeks. With Relapsing Remitting MS accounting for 85% of all MS cases, most patients will undergo a remissive state after an attack, and will resume their daily life with little or no hindrance. Some patients will continue to have modest symptoms during the remissive state which they learn to adapt to and manage by different medications and or lifestyle changes. As there are no current cures for MS, many MS patients live for decades with this disease, and must find the means to maintain a high quality of life as the disease progresses, which can be challenging in the later stages of the disease.

MS impacts many more women than men with a 3:1 ratio in North America. As the disease onset occurs during the reproductive ages, many women with MS face the dilemma of pregnancy at some point during their lives. Young women, like Nina, with MS planning pregnancies, have many questions. Because the disease presentation and progression varies from person to person, there is no exact answer and treatment and management must be tailored to the specific person’s need. However, I’d like to address some of the most common questions to help all of the “Ninas” out there:

1. “Would the disease adversely impact the pregnancy and my developing baby”?

Up until the late 1950s, women with MS were advised to terminate their pregnancies. With our advancement in the field, we know that this is almost never necessary. Many women with MS continue to have healthy babies, and research shows that there is no increased risk for having a baby with a structural malformation or developmental delay and many deliver healthy babies with no major complications. Although there is a trend toward lighter weight babies, the birth weight percentile remains in the normal range for most. Another observation has been the higher rate of miscarriage in the MS population with mixed results from different studies. The reason for this is not well understood, but the majority of miscarriages are in early pregnancy. While miscarriage rates in the general population are around 10-15%, in women with MS the rates are closer to 20%-30%. With successful conception, the chance of delivering a healthy baby at term is high, and women with MS should be assured that their disease is unlikely to cause harm to the developing baby.

2. “Would my baby also have MS”?
There is a complex interplay between genetics and environment leading to MS. While the risk of getting MS in the general population is 0.3%, having a parent with MS will increase this risk by almost 15 times. So children of women with MS may have a 3% to 6% chance of developing MS later in life, but the environmental and lifestyle factors may play the ultimate role in disease manifestation. Hence despite the genetic contribution, the risk for your baby developing MS remains small and can potentially be modified.

3. “If I stop my DMD when planning, what are the risks of having a relapse while I try to conceive?”
Depending on how long it takes to conceive, the drug free period prior to pregnancy may be a risky period for experiencing a relapse. While some women conceive after just one cycle, many will conceive after several months of actively trying to become pregnant. It will take 1 to 3 months (depending on the drug) to fully clear the system, and during this time, some may experience disease activity. If prior to starting the DMD you had very active disease, there is a risk that you’ll experience a relapse when you stop the medication, especially if it takes more than 3 months for you to conceive. The decision to continue DMDs is highly individualized and is determined on a case-by-case basis. You and your neurologist will determine the best mode of action.

4. Would having a pregnancy make my MS progress faster?
Pregnancy has not been shown to speed the disease process. In fact, pregnancy is a state of remission for many women with MS, and a time for optimal wellbeing. It is well established that relapse rates reduce by 70% by the third trimester of pregnancy compared to the year prior to pregnancy. However after delivery the relapse rate increases, with 60% of women experiencing a relapse in the first 3 to 6 months postpartum. While the risk is increased in the postpartum period, the course of MS tends to return to its baseline, and no worse than what it was in the year prior to pregnancy. Some studies have found a protective effect with pregnancy, with a delay in the long-term disease progression; however, more studies are needed to confirm this finding.

5. Would I be able to continue my DMD through the pregnancy?
Although many women with MS go through remission in the pregnancy, some will continue to experience disease activity especially in the first two trimesters. The decision to continue DMDs is dependent on several factors, including the type of medication, disease activity in the year prior to pregnancy, and the type of control achieved with the given DMD. The use of glatiramer, Interferon Beta 1a/1b, in pregnancy have not been associated with an increased risk for malformations and if you achieved great control with these drugs, and are at a high risk of relapsing, your physician may consider continuing your therapy through the pregnancy. The newer drugs, especially the oral DMDs, have not been well studied, therefore it is recommended that you discuss with your neurologist the best plan for the course of your pregnancy. There are ongoing research studies looking at the outcome of pregnancies following exposure to these medications. MotherToBaby and its affiliates are engaged in such studies. For study information or for the most up-to-date information about newer medications used to treat MS during pregnancy, call from anywhere in North America toll-FREE 866-626-6847.

6. What if I have a relapse during pregnancy?
While relapses during pregnancy are uncommon, they may happen, and can be quite severe for some women. Steroids are usually used to treat those relapses, although some success has been shown with IVIg therapy as well. A women that experiences a severe debilitating relapse during her pregnancy, may require the standard steroid therapy, while a women that experiences a mild flare-up may choose, in collaboration with her physician, to abstain from treatment. Systemic steroid use in the first trimester has been associated with a very small risk for cleft lip and palate, and use in the second half of pregnancy may increase the risk for having a smaller baby and for delivering prematurely (before 37 weeks gestation). However, it is recommended that you speak with your health care provider before you stop or change any medication. The benefits of taking a steroid and treating your condition should be weighed against these small possible risks. For more information, check out this fact sheet online: http://www.mothertobaby.org/files/Prednisone_6_13_1.pdf or call anywhere in North America toll-FREE 866-626-6847.

7. Should I breastfeed or start my DMD right after delivery?
The postpartum period is a period with a high risk of experiencing relapses. Data on whether breastfeeding has protective effect has conflicting results. Some studies suggest a protective effect, possibly due to the delay of menses returning, while others show no impact. Information on safety of DMDs in the breastfeeding period are scarce, however given the large molecule size of glatiramer acetate, and Interferons, it is unlikely any will transfer into milk. If they do, they are likely not to be absorbed from the baby’s gastrointestinal tract. There is no information regarding other DMD usages during lactation. The benefits of breastfeeding baby are numerous, but, ultimately, your functionality and ability to care for your child take priority. The decision to breastfeed or not may depend on your ability to breastfeed, especially since the demands of a newborn and the hormonal changes in the postpartum period can be very taxing on your energy levels and if you experience chronic fatigue due to your condition. Thus, if a woman (while consulting her physician) decides to breastfeed she may do so. However, if she needs to restart her DMD, currently she may be advised to stop breastfeeding.

Bottomline: While having MS poses physical and emotional challenges, it does not jeopardize a woman’s capacity to motherhood. With careful planning and close collaboration with your doctors and healthcare providers, and especially with some support from family and friends, you will be able to have successful pregnancies, healthy children, and out of control teenagers, just like any other woman. So if becoming a mother is something you have always wanted and looked forward to, having MS is more of a bump in the road rather than a life sentence, and with some maneuvering you can achieve your dreams. Happy parenthood!

 

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Meet Angela from the PatientsLikeMe Team of Advisors

Posted March 9th, 2016 by

Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer.

Angela sat down with us recently to talk about the new challenges of leading the life she wants with MS, and described the isolation that can come with living with an “invisible disease.” Below, she shares why she always keeps a notebook handy and offers some advice to others with chronic conditions: “Turn your focus outward. Look for ways to give back.”

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Biggest obstacle so far? The natural perception we have that if someone looks “normal,” then they must not be ill or incapacitated. Have you ever been critical of someone parking in a handicapped parking space because that person got out of the car, walked into the store, and appeared to be fine? Invisible diseases may require huge amounts of energy just to walk that shorter walk. On the other hand, friends try to encourage me by their comments: “Oh, I forget things all the time!” “I’m fumble-fingered and clumsy, too!” “I can’t come up with words either!” All of these comments are well meaning, but their effect is to negate my difficulties. They don’t understand the isolation that comes to patients with chronic conditions when their symptoms are trivialized.

I am learning to reframe my MS symptoms because I do want folks to gain a better understanding of the disease. “What is normal for you?” I’ll ask. “What are you able to do well all the time without thinking about it?” Since I’ve always been a doer, friends will often say, “You do so much. I’d get tired if I did half as much as you do.” Fine. But if, all of a sudden, you could only do half of what you do now, would you be satisfied that things were fine? Take your daily schedule and cut it in half. Would that be okay with you? Take your productive work, your family time, your household tasks, your leisure time, your shopping, and your time with friends, and cut each time in each area in half. What would you get rid of? What could you happily leave out? Understand that the other half of your time then, would be spent recovering from the activities you want or need to do. Think about it.

I tell these things and at the same time don’t want to be a target of misguided compassion. I don’t want pity. I do want understanding. Don’t we all?

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

MS — I have it. It does not have me. But is that really true? Most of the time, I agree. I am not living as if I’m bound to this disease. We are, however, inextricably intertwined. Those alien t-cells (in MY body, generated by MY body — not so alien after all) are attacking the precious myelin covering the nerve cells, garbling and slowing the messages to my legs, hands, bladder, voice, and eye. A war goes on inside of me — a civil war, sort of brother against brother, if one can personify cells. I can’t count on my memory or my senses to properly orient me in space and time. Friends think that sympathizing by saying they forget things all the time or are also tired a lot will be helpful to me, but its effect is to minimize what I’m going through. But it’s not normal. I have MS.

In MS, the idea of normal takes on different connotations. My normal is tingling, numb feet, checking to see if I really am wearing socks when I’m not, looking through a right eye that always seems to have a bit of Vaseline on it, tingling, clumsy fingers, and wondering how long it will take to go to the bathroom or if I can go at all. These symptoms are the current background noise of my MS. Dropping things, loss of place, brain fog, drunk walking, reading a book to a roomful of 8 year-olds when I sound like I have marbles in my mouth or have had a couple of bottles of wine for breakfast, debilitating leg spasms that come on so quickly and painfully that the neighbors must think another murder is happening when the upstairs windows are open—these are a few, but by no means all, of the additional symptoms of this weird disease.

Cognitive issues also rear their ugly, scary heads. As I stood in line at the local supermarket, the man in front of me said something about going to the next check stand. He looked right at me, but somehow, I thought, he couldn’t be talking to me. And then the checker said I could go into the next line. Me? I glanced over at the next line in befuddlement. Are they really talking to me? I was confused, stuck in a bizarre place not connected to my usual competent social self. Hours passed, it seemed, and then I got it. A new checker had opened the register and was waiting for me as “the next customer, please.” My confusion eased and I recovered, smiled my thanks and went to the next line. This loss of place doesn’t happen often, but often enough that I am on guard for it.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Give yourself time. On the emotional roller coaster you’ll ride in the first year after diagnosis, the highs and lows you experience may be overwhelming. Don’t deny them. And then take a breath and continue to breathe. Get on with your life. For me, the relief of finally knowing that all the strange symptoms I experienced were MS and not lupus or a brain tumor was huge. Realizations about how your life will change can come slowly or hit you in the face. At each realization, take another breath and start building a team of those you can count on.

Be grateful. In the end, life’s not all about you. Sitting in a pity party for very long, focused only on yourself is no place to stay. Turn your focus outward. Look for ways to give back. Each day I’m alive, I remind myself to thank God. He’s my rock.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Living with any chronic disease uses up energy, energy best spent living and not managing the doctors, pharmacies, and all the medical issues you face. I learned early that no one has my best interest at heart except me. Convincing other medical personnel to be mindful of me as the reason they even have jobs takes time and patience.

Advocating for yourself? Here’s what I’ve learned. Keep track of doctor’s appointments and interactions with any medical entity in a separate notebook, with dates, times, names of anyone you speak with, key concerns, and results. Understand that this isn’t a battle with the people on the phone, it’s a battle to get the best outcome for you. The people on the phone are a resource. You want them on your side. Use their names. Be courteous. Ask questions. Be careful to listen and follow the steps they outline. Ask more questions. Use internet information directly if they ask for research and medical reasons. Never use convenience as a reason for any appeal.

Many times I’ve wondered why I bothered with that darned notebook, but the results have been worth it. I successfully appealed a denial of coverage for a medication beneficial to me and in another case, I was able to save hundreds of dollars in co-pay billing because I could track through that notebook the conversations I’d had over the span of a year. It may seem like a chore, but your well-being is worth it. If you are physically unable to keep a notebook, have your caregiver do it for you.

 

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Oceans of Hope: An interview with PatientsLikeMe member Beth

Posted March 1st, 2016 by

Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people with chronic diseases like MS are “trapped by their condition.”

Here, Beth describes her experience onboard and what she learned about herself along the way: “Oceans of Hope is showing me I can still take chances.”

Tell us a little about yourself. What are some of your hobbies and passions?

I like to garden, both flowers and vegetables. Started glass fusing after I got MS. Love to travel. We have had many different types of campers and are also trying to figure out what will be the next best one (for the least money of course). Always have four or five projects, and most of them are 90% done. I also have a 14-year-old son, and that is a hobby and a passion all by itself.

What went through your mind when you were diagnosed with MS in 2010?

Denial. I think that is common. I thought I’d take some medicine for the rest of my life but other than that things would go on just like normal.

Actually I was lucky for a couple of reasons. I have a very large number of lesions on my brain and spine but for the most part they had lousy aim and I didn’t know I had MS until late in life (late 40s).

How did you find out about Sailing Sclerosis: Oceans for Hope?

I was reading the multiple sclerosis forum on PatientsLikeMe and a poster mentioned the Sailing Sclerosis project, the boat Oceans of Hope and the route it was currently taking. That route almost exactly matched the one I had taken in my 20s with my brother on a 38’ sailboat, Sirena, so that piqued my interest.

What was your experience like with Oceans for Hope? Where did you go, and what was it like to sail with other people with MS? 

I roomed with another MS crew for a few nights in Papeete, Tahiti before boarding the boat. We had all made contact via the Internet well before the trip, and had arranged to meet, rent a car and tour the island together. It was a good way for the six of us (three Americans; three Danes) to make first contact.

We were also able to met two people from the MS4 crew (people leaving the boat), and have dinner with them. They had done a longer Pacific crossing so it was very interesting! Gave us some good pointers and told us what berths to avoid. Unfortunately, I got one of those berths!

After a few days of provisioning and safety lectures, we took an overnight sail to the island of Moorea and anchored out for a few days. The professional crew introduced the MS crew to the finer points of “jumping off a moving boom.” I didn’t partake! (I’d have jumped off the boom…it was getting UP ON the boom that was the problem!)

Then a multi-day sail to Bora Bora which is as beautiful as everyone says. The locals were even more lovely and the folks at The Black Pearl Farm, where we were anchored, took amazing care of us. We even dove for pearls! The last leg was an 11-day leg to Pago Pago in American Samoa.

The great thing of traveling with other folk that have MS and with people that are now so used to being with people with MS was that the MS wasn’t hidden, wasn’t shameful…it really didn’t matter. People talked about it at times, comparing experiences, drugs, etc. but not dwelling on it to an unhealthy extent.

The best thing about this trip was easily the people I met and the camaraderie.

What’s one thing you learned about yourself on your journey from Tahiti to Samoa has spread?

The second thought that went through my mind after I got done denying my MS was, “Boy, I sure am glad I traveled and took those chances when I was younger, because I’m not going to be able to do anything else, now am I?”

Well I am still glad I took those chances back then, but Oceans of Hope is showing me I can still can take chances like that now.

What has your experience been with PatientsLikeMe? What keeps you coming back to the site?

I found out about sailing sclerosis on the site, for that I will always be grateful. I come back when I need to research a topic, ask a question or just find out what some fellow MSers are thinking.

 

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Food for thought: healthy eating in 2016

Posted January 27th, 2016 by

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below:

“I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.”

-MS member  

“I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!”

-Fibromyalgia member

“My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.”

-Major Depressive Disorder member

“I’ve been gluten free since Sept. 2015. I have felt better. I have also added gradually, vitamins and supplements. The most important one being D3. I now am day 3 of 5000iu D3 daily. I also take Omega 3/fish oil daily. Added calcium, C Complex, magnesium, Acetyl L Carnitine, CoQ-10, and B, Glucosamine & Chondroitin. I’m better than I was, more energy, less pain, and IBS is way better. I’m saying this works for me. Consult your doctor before going this route. Looking forward to my best year in a very long time.”

-Fibromyalgia member 

“Since I found out I have MS and cut down on inflammation, I eat very little red meat and pork. Have also cut down on processed food and salt. Feeling better!”

-MS member

Do you have any goals for eating healthy in 2016? Share them with the community!

If you missed our other Food for Thought posts, check out the previous editions here.

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Spoons and forks – not just for summer picnics

Posted July 17th, 2015 by

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available.

Here’s how it works:
Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening.

The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike in the woods. It may be hard to say ‘no,’ but easier to say, “I only have one spoon left today, and I’m saving it for cooking dinner tonight.”

Flipping it around, Jackie, who lives with multiple sclerosis (MS), came up with her “Fork Theory” as a way to communicate her pain points to family and friends. Jackie explained the theory to others in her PatientsLikeMe community:

“Forks are the opposite of spoons, you want to get rid of them. But knowing how many forks you have at any given time can help those around you understand what’s going on. For some of us, these forks take the form of chronic pain or fatigue, but for others, they may be simply a lack of motivation for the occasional family dinner (just kidding, Aunt Helen 🙂 ).”

Support that sustains
Whatever type of cutlery makes sense to you, a summer day may offer you more chances to eat well, enjoy some exercise a bit or spend time relaxing at the beach.

If you need someone to talk to about your health condition(s) and how you are using your spoons or forks today, there are more than 350,000 PatientsLikeMe members discussing more than 2,500 health conditions. Summer wherever, but summer together. Join PatientsLikeMe and discover a place to learn and connect.

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Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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