Surviving Multiple Sclerosis (MS)

Posted by admin | June 13, 2012

It’s Men’s Health Week, and we’re featuring the perspectives of – you guessed it – men.  Following tiredoftired’s guest post about depression on Monday, we are pleased to present this poignant essay by longtime PatientsLikeMe member and mentor Rick N, who has lived with multiple sclerosis (MS) for 23 years.

I am a 58-year-old man with MS.  It has often been a long, bewildering, and lonely journey, which has taken me to the valleys of sorrow and to the pinnacles of success. MS is not a death sentence, as some would say. Rather, it is an opportunity to inspire and show to the world that an incurable disease can be transformed into a blessing, an enduring promise that life can go on.

MS is a slow and debilitating disease. It creates new challenges daily. Some days I forget that I even have the illness and can do most tasks and chores. The next day may find me with a trembling heart begging for mercy. Sometimes I think that the worst of MS is the unknown. I am currently diagnosed with primary progressive MS (PPMS). I awake with fears and anxieties. What is MS going to give me today? It is the challenge I must face. However, I will tell you how the monster can be defeated!

PatientsLikeMe Member and MS Mentor, Rick N

I do not perceive MS as burden, I see it as an opportunity to overcome. MS had me in a wheelchair for over two years. I was resigned to the fact that the rest of my life would be in this wheelchair. My first thought was simply, “Okay, if this is my life now, I am going to compete in the Paralympics.” So I climbed every hill in my wheelchair as my challenge, until I developed neuritis in both elbows requiring surgery.  That was the end of that goal.

But today, in spite of that setback, I am walking because of a positive attitude and a strong faith in miracles.

My faith in God’s will and guidance for me was ever clear. I made the best of my life as an example to all that “it’s not what happens to you, it’s what you make of it.” Never did I pity myself in that wheelchair. I went out and about under all circumstances. Until one day something of a miracle happened. Whatever it was, I will never know for sure, but I was able to get up and begin to walk. It wasn’t pretty, but I put one step in front of the other and suddenly I was walking again. Then I used my lawn mower to stabilize me. Before long I could walk longer and longer distances. That was almost two years ago and I walk normally today. We all must believe that God’s healing miracles happen everyday. I am living proof.

Attitude is everything, regardless of your afflictions. MS is powerful. So much that it can lead one to believe it is impossible to live a healthy and happy life. Nothing must ever stand in the way of true HOPE. With hope and faith, mountains can be surmounted. However, this does not come easily.

PatientsLikeMe Member and MS Mentor, Rick N

Where does my unshakable attitude come? I often sit quietly, restful and calm. The physical realm becomes in some way a dwelling place for my spirit within. Time well spent in the calmness provides rest from the physical aches and strains. My pain level is always high. It is just the world I live in now. What I have cultivated from MS is the spirit of adventure and conquering the unknown. Acceptance means much.

In 2008, I came across PatientsLikeMe. It was like finding a great pearl in the oceans. Suddenly, the loneliness of MS could be understood by some 150,000 members with the same vague symptoms that I have. To explain what life is like with this disease, there are no words to do justice. But PatientsLikeMe gives me the opportunity to chart all of my symptoms, medications, conditions and treatments. It also offers daily journaling, and most of all, a forum in which I can read and comment with members that are in need of compassion or solutions to their current problems. This is a resource where I can find the answers to all of the confusion that goes along with most chronic illnesses. I have most definitely found it a haven of comfort.

I want to thank all who have read this. I am not a writer nor have I the talent for words. I only wanted to express my feelings about MS and the values that the disease has brought me. Should there be a cure today, I would much rather opt for the continuance of this illness. Reward and treasures are mine that I could obtain nowhere else.

Mike Wallace, Depression and Me

Posted by admin | June 11, 2012

In honor of Men’s Health Week, we are pleased to present a guest post by PatientsLikeMe member tiredoftired, a young man who has been living with major depressive disorder since 2007.  Don’t miss this moving essay about how Mike Wallace’s passing earlier this year impacted and inspired him.

As I was driving to therapy on an April afternoon, I heard a news report that Mike Wallace, an original host of the television show 60 Minutes, had passed away.  I was intrigued when the short segment highlighted Wallace’s accomplishments in his battle with depression.  I was only somewhat familiar with the show, but it was obvious from the report that he had a decorated career as a journalist and his professional accomplishments could have easily taken the full slot.  Having struggled with depression myself, I felt compelled to investigate his life further.

Mike and Mary Wallace.  Photo Courtesy of CBS News.

For those of you who are unfamiliar with his work as I was, Wallace was a pioneer of the newsmagazine format, which shaped journalistic television.  He was a pit bull of a correspondent; with his aggressively confrontational approach, he posed direct questions that others were too afraid to ask, often leaving the subject shaken.  Wallace interviewed some of the most eminent, and even fearsome, people and did not hold back on his interrogation-like technique.

But Wallace said that his greatest accomplishment in life was that he survived.  Wallace endured several bouts of severe depression throughout his life, the first of which left him in such emptiness and despair that he attempted suicide as a means of escape.  He used his personal experiences with depression to share ideas that would give other sufferers advice and hope.  Reading about his life made me feel the same comfort he provided to others when he was alive, and I have become encouraged by lessons he transmitted.  Here are the top four:

  • There is no shame in depression: Wallace constantly repeated that depression does not signify an emotional weakness.  The pain, inability to cope and despair are unfathomable to those who have not experienced depression.  It is not a sadness that is surmountable by sheer willpower.  Aside from reassuring sufferers that their pain and disabilities were justified, it comforted them by seeing someone well-respected using his high-profile position to dissolve social stigma.
  • There is no shame in asking for help: The stigma can prevent people from seeking help and make them embarrassed that, unlike others, they are unable to push through sadness themselves.  Wallace said that the single most important thing you can do is to go and talk to someone.  He stressed that it is impossible for one to handle alone, and he encouraged people to seek therapy and take medication, as well as emphasizing the importance of social support from family and friends.
  • You are not alone: During depressive episodes, Wallace often talked to two close friends that also experienced depression.  By talking to those who could truly empathize, he felt comforted and validated.  Not only was he reassured that what he was feeling was normal, they were able to give him valuable insight and ideas.
  • There is a light at the end of the tunnel: Wallace’s friends also gave him hope.  He saw that they had been through the darkness of depression and survived.  And he passed along that message to others. As bad as it seems now, he told people, look at how he emerged from that same prison and went on to live a happy, productive life.

Mike Wallace has inspired me to perpetuate these messages and give others the same comfort and hope he gave me.  Depression is a real medical illness and pursuing treatment is nothing to be embarrassed about. With the help of mental health professionals and a strong support system, we have the ability to fight through the darkness.  By doing that, we can do more than just survive – we can build productive and meaningful lives.

Learn more about Mike Wallace’s struggle with depression in this candid CBS interview from 2006. Also, if you’re living with depression yourself, we invite you to join PatientsLikeMe’s depression community and connect with more than 11,000 others like you.

Someone Like Me

Posted by admin | May 25, 2012

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?’” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!