Baseline Information

     As a teacher for students with special needs, I was expected to develop an IEP (individualized educational plan) for each of my students. This plan brought together all of the academic and social factors needed to encourage success and remove obstacles to learning.

     I believe those of us with MSA should employ something quite similar - a PTP, to encourage ourselves toward better living, day by day. I'd like to begin this concept by discussing 'baseline data'.

     It's rather hard to know if we're making much headway with any of our strategies if we aren't quite certain of our starting point. Of course, most of us know our limitations - but, do we know our strengths?

     If you're not already doing so, consider keeping a journal or log of your most notable MSA symptoms. Using a scale of 1-10, rate the severity and then track the duration of symptoms. If you find this overwhelming, you may want to focus on 2 or 3 symptoms in particular - we might consider these 'target symptoms'.

     I chose to collect information daily (sometimes twice daily) on the following: 
mobility (how far I could walk, how often, and whether or not I needed assistance), debilitating fatigue and bed rest (how often it occurred and how long it lasted), insomnia/sleep disorder (how often it occurred and the duration of sleep). I also tracked choking incidents when they happened.

    By following this model for at least one month, we can begin to understand the baseline of our symptoms. As we introduce interventions, we can measure signs of change.

 Personal Treatment Plan(PTP)

    By developing and implementing a personal treatment plan (PTP), we may be able to build and strengthen our abilities - or, at least extend the time we have them. Develop your own PTP to include these strategies to take advantage of neuroplasticity.

    Each goal/intervention should have a start date, specific goals, and specific strategies for reaching them. Don't overwhelm yourself. Keep it somewhat simple. Create your spreadsheet/graph with the services you currently receive and the personal goals and objectives you'd like to meet.

 - REDIRECTION:

   When we attempt a physical activity, we may find that we're 'blocked' - that we may tremor/spasm badly, or we may be unable to bring forth the motor skills needed to completethe task.

    The concept of redirection guides us to distract ourselves from the 'failing' task, rather than forcing ourselves into a 'cul de sac'. Try another form of activity, another form of exercise briefly, then return to the original task. Repeating this strategy encourages the brain to utilize redundant neuro pathways to complete the task. This takes time and patience.

 -  DIFFERENTIATED STIMULUS: 

     As it relates to exercise or physical activity, differentiated stimulus employs a variety of movements, engaging a spectrum of both fine and gross motor skills.

 This, of course, applies to interventions used in physical/occupational therapy. Rather than forming a set routine, develop a freelance approach that utilizes fine and gross motor movements.

     Attempt new activities (within safe limits). Take up sketching, play an instrument, build models, learn to knit, and so forth. Remember, the outcome is not the product itself, but the process.

 - SOCIALIZATION:

     Physical activity is much more enjoyable when we have others to share it with and to encourage us along the way. There may be a fitness/wellness center in your local hospital (they can adapt activities for us MSA folks). Find a workout partner who can guide you (and to be there in case you need assistance). Maybe there's a watercolor or pottery class in your local community center. You get the idea.

     Set goals for successful interventions and healthful living. One more note: we must strive to not rely heavily on walkers and wheelchairs and so forth before we absolutely must have them for safety. Research shows that their continued use creates new neural pathways in the brain, specific to their use, making it more difficult to perform tasks without them. 

     While researchers search for a cure for MSA, strive to do all you can to stay ahead of the progression and maintain quality of life.