Wednesday, June 15, 2016

Study Finds Link to Rheumatoid Arthritis in the Microbiome

Really exciting news! We're getting much closer to finding the cause of RA:

"A new study has found a direct link between specific bacteria in the gut and rheumatoid arthritis (RA) -- an exciting discovery that could bring us closer to understanding the cause or causes of RA.
Micro bacteria in the gut

Each of us has a collection of microbacteria in our guts. The collection, which weighs roughly three pounds in an adult, is called the microbiome and is made up of about 1,000 different bacterium species. Microbacteria play an important role in our health: some protect us against illness, while others possibly play a role in the development of certain illnesses.

Previous research has implicated certain specific microbacteria as being associated with RA, but the exact role and dynamic was not known."

Find out more about this study and its implications in my HealthCentral post.

Tuesday, June 14, 2016

Book Review: Ghost Boy

Martin Pistorius was 12 years old when he got sick. Over the next year, he gradually lost function of his body, his speech, and his mind. The doctors did not know what was wrong with him, but treated him for a bit of everything with no effect. At the end, they told his parents that he had the cognitive ability of a three month old child, and likely had no more than two years to live. They also said his parents should take him home to die.

A few years after that, Martin started waking up, becoming aware of his surroundings and regaining his mind. Unfortunately, he did not regain the use of his body, so no one knew that he was back to being himself again. This lasted more than 10 years.

Once he was in his early 20s, one of his caregivers noticed that he was responding as she spoke to him. She persuaded his parents to get him tested again and this was the start of his journey with augmentative communication and regaining part of his physical ability.

Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body is Martin’s memoir of his life during those years of silence. He writes eloquently about what it was like to be there, but not seen as a person. To be a body that is the passive recipient of care and unable to express any preferences at all.

He also writes about the abuse he suffered from caregivers. People with disabilities have higher rates of abuse and this is primarily doled out by caregivers. Martin’s depiction of this is heartbreaking and a call to action on better conditions and oversight of care.

Ghost Boy is also the story of his family and how his condition affected them. His parents were dedicated to taking care of him, but it was hard. There are some uncomfortable stories about just how hard it was and the impact it had, especially on his mother.

This book is also the story of how Martin learned to become a person again. A person who has free will and who makes choices about things as simple as what to have for breakfast, how to dress, and as complex as what to do with their life. After more than a decade of having all these choices made for him, learning how to be in charge of his own life was a challenge. A wonderful one, it turns out. When he was in his 30s, Martin met the woman who became his wife and the book is also about their love story.

Given my recent medical adventure, there was much that resonated in this book. I was lucky, having only three weeks or so of being silenced when I was on a ventilator. Still, there was familiar moments in Martin’s stories of his difficulties connecting and communicating.

Ghost Boy makes you think. About how we view people with disabilities, especially profound disabilities. About how we treat those who have difficulties communicating. About the abuse so often suffered by people who are dependent upon others. About the impact of disability on just not the person themselves, but their family and friends.

I highly recommend this book. It’s an easy, fast, and meaningful read. The audiobook is narrated by Simon Bubb, a UK narrator. He does an excellent job, but his British accent got a bit in the way for me. You see, Martin is originally from South Africa and I would have preferred his story in a voice that was closer to his upbringing and environment. For once, I’m recommending that you get the regular book instead of the audiobook.

These days, Martin is happily married and runs his own business. Check out his TED talk to hear the story from the man himself.

Monday, June 13, 2016

Increase in Deaths Associated with Methotrexate

A new study finds that accidental overdoses of methotrexate are causing an increase in deaths. More on this and how to be safe in my new post for HealthCentral:

"A new study out of Australia shows a worrying increase in accidental overdoses of methotrexate, a drug commonly used to treat rheumatoid arthritis (RA).

About methotrexate

Methotrexate is an immunosuppressant drug originally developed as chemotherapy for leukemia and other cancers. Smaller doses also proved to offer effective treatment for RA, and since the 1990s it has become the gold standard. It is administered weekly, either in tablets or injection form. Methotrexate often is prescribed with folic acid to combat side effects, such as potential hair loss. Individuals taking this medication also may be prescribed prednisone."

You can read the rest of the methotrexate post here.

Thursday, June 09, 2016

How I Cope with Mortality Risks of Rheumatoid Arthritis

My new post for Mango Health is about coping with the mortality risks of RA:

"The first time I heard the term ‘mortality risks’ associated with rheumatoid arthritis (RA), I wanted to stick my head in the sand like the proverbial ostrich. If I can’t see it, it isn’t happening. Right?

Although repression is my favorite coping strategy, it does absolutely nothing to deal with a very real phenomenon. When you live with rheumatoid arthritis, you have an increased risk of death. It’s called the ‘mortality gap’, and it refers to the lower life expectancy that historically has affected people who have RA.

That’s a really scary thing to read. Much of RA is already unnerving — inflammation, fatigue, pain, and the possibility of deformities in your joints. After living with this disease since I was four years old, I’d gotten used to that, though. But potentially dying because of it, and early? That would severely interfere with my plan to live to at least 100 years old."

You can read the rest of the post here.

Tuesday, June 07, 2016

Me Before You: Better off Dead Than Disabled?

The movie version of the book Me Before You: A Novel (Movie Tie-In) came out last week and the disability community isn’t happy. And for once, I disagree with my community.

I should mention that I haven’t seen the movie (yet), but did read the book about six months ago and liked it a lot. I should also warn you that this is an opinion piece and therefore spoilers abound.

A short (spoiler-intense) summary: Louisa “Lou” Clark gets hired on to provide care for Will Trainer, who became a quadriplegic in an accident. And he wants to die. Will has promised his parents six months and they have promised him that if he hasn’t changed his mind, they will accompany him to Dignitas, a Swiss clinic that provides assisted suicide services. Louisa and WIll fall in love, but it doesn’t change his mind.

Objections to the movie state that it is a disability snuff movie. That it has a message that the disabled life isn’t worth living, that you become a burden to others, and the person with a disability (and their death) being used as a vehicle for the character and personal development of the able-bodied characters. We all know how much Hollywood loves to kill off people with disabilities and illnesses for the entertainment of the masses and on the face of it, Me Before You is just another variation on a theme.

Except, I’m not so sure.

I’ve used a power wheelchair since my teens and I’m an active disability advocate. I’ll be the first to have a rant about people with disabilities being used as plot devices for character development in the able-bodied (Million Dollars Baby, anyone?). And the general stereotypes about us being better off dead.

That said, I quite liked Me Before You. I thought it was a decent and authentic exploration of the issues. It portrayed one person who wanted to die rather than live. It did not say that all people with disabilities wanted this or should it do this. Lou connects with a community of other people with SCIs and hears that it is very possible to move beyond that initial depression and live boldly and fully with disability. Every person who is close to Will tries desperately to help him see that there is still a beautiful life to be led. No one tells him he’s a burden, in fact other than Will himself, no one thinks he is a burden.

I think the message is loud and clear: disability is not the end of your life and that is the very point that Lou tries to show Will. He won’t hear it, though. He might be in love with her, but sees the rest of his existence as torture. Before his accident, he was active at work and participated in extreme sports. Losing his body is devastating to him.

Obviously, I will also be the first to mention that spending that six months stuck in your parent’s home is not conducive to seeing that you can live a full life with disability. I don’t understand why he is not working — after all, his job was mental, not physical — and I don’t quite understand why he’s not living independently in his own apartment in London. He had a good job, was quite wealthy and can obviously afford attendant care, so why he is languishing in the country is beyond me. No wonder he is depressed.

Ten years ago, in the very early stages of this blog, I wrote about The Sea Inside, a movie about the Spanish writer Ramon Sampedro who chose to end his life rather than live as a quadriplegic. Like Will, he isolated himself, and I made the same argument then as I do now. Reconnecting to the beauty in life is a lot easier if you actually live it, rather than being stuck in a bed on the third floor of a farmhouse or in the relative luxury of a country home. That does not give life a chance.

I’d also argue that not being able to see the value in living without the ability to walk is a very able-bodied perspective. I can’t tell you how many times I have seen or heard people say a variation on “if I lost the ability to walk, I’d kill myself.” It reflects the stigma and stereotypes that are still so very much part of the stereotypes around disability. And I believe it shows a lack of imagination.

That said, I also fully believe that someone who has a disability should not be made to live because others — even so many of us in the disabled community — have found a way to live well. With the right resources and support, you can live boldly, live well, and create meaning in your life. Even participate in adventure sports, should that float your boat.

But just because I have found a way to love my life, because you have found a way to do that, doesn’t give us the right to prevent others from saying no to living with a disability. The truth is that some people never get over it, never come out of the darkness. Should they be doomed to live in misery just because we think they should? Should they be doomed to have to find a truly terrible way to kill themselves (and I’ve heard of several who ended their lives in very terrible ways), rather than have the option to die in comfort and with dignity?

I believe in choice and the right to live life the way you wish. That includes the right to end it, if that is your heart’s desire. Ideally, that decision should come only after psychological assessments, sufficient time to give depression space to ebb, and adaptation time to settle in, as well as all the bells and whistles that are involved in a place like Dignitas. More importantly, I believe the person should have the opportunity to take a stab at actual life — meaningful employment, independent living with quality attendant care, and all the other supports that can enable you to truly live. 

But if after all of that, someone is still desperately unhappy and can see only ashes, who are we to tell them otherwise? Do we do each other a disservice by refusing to talk about that part of the disability experience?