Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living with MS is such an ongoing challenge. Living with progressive MS is even more of a challenge.
The positive thinker adopts the mantra: "I have MS, it doesn't have me." There are times MS tries to take over our lives. It's as if the disease is an evil entity with a life of its own, but we must make the effort to ensure MS does not dominate. We are still the people we were before MS invaded our bodies. To stay true to the positive mantra, it is more important than ever to work on a healthy quality of life. I am here to tell you Progressive MS does not indicate the end of life. Our lives are different, but still within our power to shape.
People with Progressive MS face an unknown future that no one can predict. The purpose of this series of articles is to offer information and some comfort and hope. Facing the "scary" parts allows our lives to be more manageable. MSers living with Progressive MS should be prepared physically as well as emotionally. Do the most you can to take care of yourself. Get to know your symptoms. You know your body better than anyone else. The more you can tell your doctor, the better chance you have of getting the best treatment.
It is a good idea to track your progression. Note each new symptom, when a symptom gets worse and when it reaches a plateau. Sometimes that is not as easy as it sounds. My friends and family often tell me I look good, just the same as always. Maybe they are being kind and don't want to tell me if I look pathetic. Regardless, the changes we feel have little to do with our appearance, and often result in more effort required for our daily routine. No one sees and feels the progression as we see it.
Conversely, we don't see what they see. Both Julie Stachowiak and MS Central's own Lisa Emrich tell about having differently sized pupils. They didn't realize it until they were told. Therefore, it is a good idea if we MSers are open to having our friends tell us about symptoms they might notice. This could include pupil sizes or fuzzy thinking or anything we might never notice, but our doctors need to know.
Denise suggests "Find a good Neurologist with a specialist interest in MS, and also an MS Nurse. Don't try to manage on your own. I tried managing on my own for 18 years, and in retrospect it was probably a mistake." Building a knowledgeable care team is a big step to a well-managed life with MS.
Secondary Progressive, the advanced stage of Relapsing/Remitting MS, allows many MSers to simply continue as they always have. Is that to be acceptable? Chatting with two online friends with progressive MS, Beverley and Denise, helped clarify this situation. Let's look at the similarities.
The most irritating symptoms in Progressive MS are fatigue, tremors, assorted pains, and trouble walking. These are the same types of symptoms that bother all MSers. It seems Progressive MS often leads to fears of requiring a wheelchair full-time, or even worse, being in bed full-time. Some people choose not to think about it, and take what happens one day at a time. These fears are not exclusive to Progressive MS because the symptoms occur in all stages. However, the chair and bed scenarios are more prevalent as the Progressive MS advances.
MS steals our abilities, but functions can often be supplemented or replaced by assistive devices and helpful friends, family or professional caregivers. There are various walking aids available to supplement different levels of walking difficulties; all types of software and add-ons to supplement computer skills; devices to ease transfers; minor construction to enhance accessibility. Caregivers can supplement daily tasks, even minor or personal ones.
As MS saps physical strength, emotional strength takes over. Just like all aspects of MS, the level and rate of progression is individual and cannot be predicted for any one person. Where some people require a wheelchair, others maintain their mobility for years. Just as MSers hesitate when finding out if they are transitioning to the next phase of MS, many hesitate to investigate availability of helpful devices. This may be an unconscious attempt to deny the advancing disability.
Annette Funicello, singer, actress, darling of the 50s and 60s, and Progressive MSer said, "For me, the wheelchair symbolizes disability in a way a cane does not." I think I understand her comment. I could still walk but not too well and not too far. As soon as I bought my Amigo scooter, I wished I had done it sooner. I have heard this same sentiment from many others.
Just as the transition from Relapsing/Remitting to Secondary Progressive may be gradual, so is the increase in disability. Many people use a cane in the house and a wheelchair on outings, taking advantage of the ability to walk without risking fatigue. MS often progresses very slowly to medium slow. Doctors can track the actual rate of progression, or we can track it based on our own perceptions. Healthy living and medication sometimes reduces the rate of progression.
Sometimes the progression is much faster and the disability is more drastic. That seems to be the final fear of many MSers, where the choice is between a wheelchair and a bed. Even from the bed, there can still be high spirit and hope. It is still possible to have love and joy. See Access Denied for an example of accomplishments and struggles, with a positive attitude and the support of a loving partner, two dogs, and a large online community.
Welcome to a glance into the world of Progressive MS. Let me leave you with some final thoughts. Progressive MS means some level of disability is inevitable, but as Denise says, it is only a label. Keep a positive attitude and Beverly reminds us to "Never Give Up, Not Ever!"
I am reminded of a movie that inspires me to do the best I can and appreciate what I have while I still have it. The Diving Bell and the Butterfly tells the story of a man confined by an extreme disability who learned to escape from his prison using memories and imagination.
As my disability increases, I find myself focusing on the abilities I still have and the love around me. As long as I keep my positive attitude, memories, and a lively imagination, the world is my playground. I may as well have a good time.
There is no duty we so underrate as the duty to be happy.
By being happy we sow anonymous benefits on the world.
~ Robert Louis Stevenson
Next I will talk about medication and clinical trials for Progressive MS.
A Stellar Life's MS Tool Kit
Here is one story of a 30-yr MSer who focuses on quality of life and positive attitude.
Pinpointing Progressive Rate
Merely Me's book review