92 posts tagged “community”

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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