408 posts tagged “PatientsLikeMe”

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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“Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story

Posted May 26th, 2017 by
The 2 Sides Project

Margot visiting the location where her father’s plane may have crashed in 1966. Photo courtesy Istrico Productions.

Margot Carlson Delogne is the Vice President of Communications at PatientsLikeMe. She is also the child of an American soldier lost at war.

This Memorial Day we wanted to show how she’s working on her own healing process, but also repairing some of the divide left in the aftermath of the Vietnam War. In December 2015, Margot, along with five other grown sons and daughters of American fathers who were lost in the war, travelled to Vietnam to confront the painful history of the parents they’d lost and to meet face-to-face with grown Vietnamese children who had also lost parents in the same war, but on the opposite side. The journey, named The 2 Sides Project, also allowed the group to visit the locations where each their fathers had fought and died, an experience that left Margot “changed forever.”

“My father’s plane went down 200-300 meters from a bunker that had been his target,” Margot says of her father, Air Force Captain John W. Carlson, who was shot down in December 1966. “We looked at online maps before we went and they showed an odd line of trees along the edge of a road, and exactly 200 meters from that, another set of trees that looked different from the rest…So we went to that area and got permission to walk toward the spot. One of the other American sons on the trip, Ron, watched his GPS and reported how close we were every few steps. He stopped me when his map said 200 meters and pointed in front of me. I looked and saw a crater. I asked Ron if its shape and size were natural and he said no, he didn’t think so. So, I walked into it and sat in the center. That’s where I held my father’s service. I read messages from my sister and my mother and played a favorite song of my father’s, Greensleeves. Margaret, a fellow airman’s daughter on the trip, helped me read the poem High Flight, by John Gillespie Magee, Jr. I climbed out of the crater and left, a little lighter than before.”

The 2 Sides Project

Margot sitting in the crater where she held her father’s service. Photo courtesy Istrico Productions.

In the same trip, Margot and the group also met with twenty Vietnamese sons and daughters who were children of parents lost fought in the war on the opposite side. Their meeting, according to Vietnamese officials, was the first formal one between children whose fathers died fighting on both sides of the war.

Mr. Xiem, 66, took part in one of the historic meetings, sharing with the group that his father had been killed by American bombs in 1965, and two years later his school was bombed by an American aircraft killing 33 students at 1 teacher. “When I was informed that I would meet with The 2 Sides Project and interact with children of U.S. soldiers killed in the Vietnam War, I began to think a lot,” Mr. Xiem said. “My feelings gradually changed from hatred and resentment to empathy and pity for the children of American soldiers killed in the Vietnam War. When I came to the meeting, I saw the lack of confidence, the anxiety on their faces…I witnessed their tears. And at that moment my hatred seemed to melt away, leaving only sympathy.”

The 2 Sides Project

Mr. Xiam wearing The 2 Sides Project pin, standing with Ron Reyes, an American son. Photo courtesy Istrico Productions.

The entire journey, which has been covered by the New York Times and the Washington Post, was documented in film by Anthony Istrico, Director and Founder of Istrico Productions, and premiered at the GI Film Festival last night. Three members of the Vietnamese group joined Margot and the five other American sons and daughters for the premiere – watch the trailer here. They also visited the Vietnamese Embassy and the Vietnam Veterans Memorial, along with a number of other cultural activities, and ABC News was there to cover their journey.

The 2 Sides Project

The American sons and daughters, from left to right: Margaret Von Lienen, Ron Reyes, Margot Carlson Delogne, Mike Burkett, Susan Mitchell-Mattera, Patty Loew.

When she presented the idea of the 2 Sides Project to the Vietnamese government, the official’s reaction amazed her. “He looked me in the eye and said ‘our countries have come together but our people have not, and I think your project will help. We will support you however we can.’ That’s when I knew this was going to become a reality.”

In her own way, Margot is working to mend the rift between the two countries the best way she knows how, communication. To read updates and stories about their journey, visit the 2 Sides Project website .

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