Traveling Tightrope

Happy Sunday! What a week. We celebrated Stephen’s birthday and our 22nd anniversary this week. August is our busiest month. Tons of family birthdays, anniversaries and back to school. Caroline went on one last weekend getaway with friends before school starts next week. She’s going to be a SENIOR. I think I’m still in shock. It’s so cliché, but seriously where does the time go??? Like most Sunday’s I’ll spend the day getting stuff done around the house to get ready for the next week.

The Panama trip is just two weeks away and I have some things I need to start preparing for. I’m also the event planner and trip coordinator in the family fyi.  This kind of stuff is always a reminder of the challenges Stephen faces with traveling.  Spontaneous travel is not something we can do. There is some research and planning that has to go into our trips. And not just what sites we want to see and things we want to do. But more specific….how big is the hotel? Is there a lot of walking? Can we be close to the elevator? Is the city a walking city? Do we drive or fly? Bottom line…can he go and get around or will it be too much trouble? We take a few trips every year, usually to our same spots where we know what to expect and it is fairly easy to navigate. Large airports are exhausting, as there is lots of walking, waiting in lines, standing, and more walking. And to top if off, there are super small seats with no leg room…cue the leg spasms. And forget it if we have to change planes.  I may have strongly suggested he use one of the airport wheelchairs on our last trip. He offered a little resistance, but he was out-numbered. I know it’s a pride thing, but sometimes it is the only option. Not to mention he doesn’t like my wheelchair driving.

It didn’t happen overnight, but gradually over the years. Learning his limitations and planning for them has become our normal. Any event in a large venue is usually something we pass on.  Large resorts are a no-go, no hiking or water sports, no walking tours, and for sure nothing that is standing room only.  These questions usually determine where or if it is worth it. There are times when we don’t even consider the trip because we both know it is too much or that it just won’t be doable.  Our network of friends get it, and they are all so helpful and thoughtful when inviting us somewhere. But I would be lying if I said I don’t dream about the day when this isn’t our reality. I have dreams of an easier life for Stephen.

The stem cell treatment offers some great hope. We know it isn’t guaranteed that he will see any improvement, but we are praying and we have hope. HOPE for some relief, some change, being able to do the simple things that so many of us take for granted. Just hope.

9 thoughts on “Traveling Tightrope

  1. I am writing this thru my tears that don’t come often because I’m taking cymbalta !! Your words are so perfect! I see you and Stephen during the past fifteen years and also witnessed so many ups and downs. You have exposed others to what MS does to not only the sufferer but his loved ones as well. We were all blessed the day you said I do to Stephen. You are determined, honest, tough, loving and your sense of humor shines through at the most perfect times. Also we can always count on you for onions and lettuce for any family get together. Thank you for being such a beautiful example of a “woman” for Caroline and living by your vows you and Stephen exchanged. I love you Amy. Your favorite aunt Pam🤓

    1. Thank you. Your words mean so much. Family is so important and I’m so glad we can share this journey with everyone. xoxo

  2. Your story touched my heart. My husband terry also has ms. This has been part of our lives for the last 36 years. We have been blessed with 6 children and 13 grandchildren children. Going to family gatherings can be a bit overwhelming for Terry. In addition to limited mobiliity he also deals with mental confusion. . We also researched stem cell treatment in panama and made the trip last week. We are hopeful for improvement in the next few weeks. We would like to keep,in touch to see if you have success with this treatment.

    1. Diana,
      Thank you for sharing. I will be praying for a positive outcome for your husband. Please keep in touch and let us know how your husband is doing. I will be sharing Stephen’s experience on this blog. Stay tuned.

  3. Hi, I am a high school friend of Pam and Scotty, and a college friend of Scotty’s wife, Penny. I would be interested in following your blog. Is this the first post? I don’t see how to access past posts. Your words can be helpful to people who do not have MS as well. I don’t have this disease, but I can’t walk for long or very far, and the last time I had to get from one gate to another at an airport, it just about killed me. Fortunately, an airport staffer saw me and plopped me into a wheelchair which he pushed to my next gate. Now I know to ask for that assistance ahead of time. Thanks for starting this blog. (BTW, I don’t have this website anymore, but WordPress insists on saying that I do)

    1. Hi Mary,
      Thank you for your kind words and sincere interest. Please follow along as I will be updating along this journey. The newest posts are listed at the top; scroll down to read the previous posts. You can click the “follow” link and add your email and you will be notified when there is a new post.

  4. Hi Amy,
    I have a cousin in her 40s that has been suffering with MS since her 30s. She has two beautiful children and a wonderful husband who takes very good care of her. She has a very aggressive form of MS. She is wheelchaired bound, but does not let that stop her from getting around. I’m praying for you and your husband. Praying that his surgery is successful and look forward to reading your next blog.

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