When I was a child, I loved working pencil and paper puzzles. You know the ones I’m talking about? There were dots, numbers, or letters on a page and as you connected the dots, a picture emerged. What I did not realize at the time was that doing those pictures was actually very educational. I learned hand and eye coordination. For the number and letter ones, I practiced adding or learning my alphabet. The older I got, the better I got, of course, but I always loved doing those.
I also liked the mazes. Sometimes I would cheat (start at the end and work to the beginning) but most of the time I liked thinking ahead, planning my approach, and seeing if I could find the best route.
Life reminds me of those puzzles. Sometimes, I feel like I’m connecting the dots and following the steps in a logical manner. Other times, it’s like I’m lost in a maze. I go along fine for a while and then “bump” I run into a wall and have to back up and find a new route. Doesn’t that sound like life as a caregiver?
When Lynn was first diagnosed with MS, I used my connections at work to start down our path. I work in a rather large medical center and I know lots of people throughout the center. I had accompanied Lynn to his cardiologist’s appointment (Lynn also has mitral valve prolapse) and his doctor was asking how he was doing. I told him I thought his heart was fine; something was wrong with his back. He asked me who I wanted Lynn to see. I gave him a name, and he got me (Lynn) an appointment. From there, we worked our way to a neurologist who was conducting an MS study, and he became Lynn’s MS doctor.
Through participating in the MS study, we became friendly with the study nurse. As I was sharing my concern about how Lynn was feeling and that I thought it might be diet-related, she suggested a dietician her husband had used. This dietician had a great interest in MS, and she’s the one who found the MS diet that Terry Wahls developed, which seems to be making Lynn feel better.
Not everything along this path was a “connect the dots” puzzle. The journey to deal with his severe spasticity was more like a maze. We tried baclofen tablets until the dose was so high it was obvious that it would not work even with other medications added to make it stronger. We tried a chiropractor which helped his back but not his muscle spasms. He tried massage, but it released so many toxins in his body that he felt worse. Then there was acupuncture, which, for him, only caused the spasms to get stronger. Finally, we resorted to a baclofen pump implant, so the dose went directly into the spinal fluid. That fixed his legs but now he’s struggling with his arm being tight as a drum. So we turned another corner and tried botox to paralyze the muscle temporarily which worked well for the first few doses but not as good for the last two. So we back up into the maze and are trying exercise and stretching, and next week, we will try massage again. So far, we have not found the right path in this maze.
But through our MS experience, we have made great connections. We have some wonderful medical professionals who support us and who truly work to research solutions to his problems. Our church has been awesome….so many people who hear about our needs and support us in prayer, donations, and assistance of all types. Our struggles have brought us closer to each other and our families who stay connected to us now more than ever so they can assist us in whatever we need.
One of the best connections I’ve made is this blog. I have had so many people connect with me who are experiencing some of what we go through, and it’s very comforting to know that they are there. Knowing how someone else has handled a situation or even just knowing that someone has the same struggle and is hanging in there and surviving each day helps us to push on.
When Lynn became unable to move around on his own, we stopped going to many places. Mainly, now we go to medical appointments or occasionally to the store for something only he needs (he is the only one who can determine what he needs in that department since I am totally incompetent when it comes to figuring out what is needed to fix something). But even though we are now pretty isolated, reaching out through the internet to find out information or to connect to other caregivers or people with MS keeps us from feeling as if we are isolated. True, it’s a virtual visit when we talk online, but it’s no different from a telephone call, and when it’s online, it’s on my time, which gives me more freedom and more options.
So even though it’s difficult to stay connected if you have MS, it’s possible, and it’s necessary. I cannot get away to go to support groups or conferences, but I’ve found out SO much about treatments and options on MS websites and by reading blogs or comments by people with MS or their caregivers. We don’t have to be in this alone even if we live alone or in virtual isolation. That’s why I started blogging. I wanted to connect to others and hopefully share experiences or something that might make my experiences easier to accept or someone else’s easier to manage.
I think the MS Connection site being set up by the National MS Society and which will go live on March 12 (I believe) may help with that as well. I’ve had the opportunity to see a preliminary version of it, and it basically seems like a combination of an MS social network and educational resources. I hope lots of people will share it because it will certainly allow us to connect the dots from one to another even more easily.
