Sharing the MS Journey

Let’s face it! We have MS. Actually, only my wife has primary progressive multiple sclerosis. But, having made the choice, I share the journey as her primary caregiver. We are now in our mid 60’s but far from finished!

Over the past 10 years she’s lost a significant portion of her basic functions, daily activity, recreational enjoyment and independence once taken for granted. Her daily chore of coping includes highly restricted mobility and a degree of independence built on abundant spiritual faith and inner strength. Help comes from the attention of many kind friends and special caring from a concerned family. As her husband, I serve up a double dose of personal caregiving, as well as the anointed chief cook, housekeeper, shopper, driver and “please get me this” and “get me that” attendant.

We’re on this powerful trip together:

It wasn’t planned this way — far from it. After retiring I dreamed of daily golf, mountain and beach vacations, car trips, visiting friends afar and an occasional overseas excursion. Now we want to share with others the story of our changing journey and how we cope. The remedy we most rely on has little to do with medicine or the latest therapy. MS has no cure. The doctors don’t know exactly what causes the severe progressive destruction (with scars) of the protective sheath surrounding the spinal cord. Positive living with MS has more to say about personal caring, sacrifice, lots of adjustment and change.

It also has a great deal to say about loving support, family understanding and sharing a needed faith.

Our MS has also been a road of hope, extra work and effort, and lots of sacrifice wrapped in a special union. The path is difficult and it doesn’t get easier. But we’re not alone. Tens of thousands face similar problems — often with pain but hopefully with inner strength and courage. Whether it’s MS, spinal cord or head injury, cancer, diabetes, Alzheimers or Parkinson’s we travel together. We’re sharing the passage — not on the slopes, tennis courts or golf links—but in the daily challenges of extraordinary loving care.

Reflecting quietly on sharing the difficult and trying MS experience—so vastly different than our imagined dreams of 1957—I often marvel at the significant changes imposed and a cautious self-resilience we have grown to accept.