Managing MS vs. Living with MS

“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

Leave a Reply

Your email address will not be published.