During a meeting at my desk one day my phone rang, I apologized while I reached to silence it. One thing struck me though; it was my husband calling at 10:30 while he was at work. This was unusual so I apologized again and said it may be an emergency – it was.
My husband had not been feeling well that week and the stress of his work plus a virus had come to a head and one of his coworkers was taking him home. When I arrived I realized that this situation was more serious than just giving him some help up the stairs. We had a little food (he could barely put fork to mouth) and got back to the car on our way to the emergency department. My husband takes Tysabri and is JC positive so first things first – double check we are not having that nasty what’s-it-called virus and fast. The answer ended up being not that virus but another (less deadly) one. Whew. Unfortunately my poor man had to have a spinal tap and this produced a spinal headache that made him bed-ridden, well, even more bed ridden.
In spite of everything the doctors said about a recovery, my man seriously thought he was dying and said goodbye to me several times. I cannot describe for you how difficult it was. Although we did have a lot going for us; an amazing support system including family, friends, neighbors and co-workers. He was off work for several months; this could have been a turn for the worse for him and our family. But do you know what he did instead? He began to focus on his health. Yes HE focused on his HEALTH (not something that many of us are trained to do in this society of over indulgence and over work). No one can do this for your loved one...they have to decide that they, or rather their health, is literally their main focus. You can suggest it but unless that person consistently is thinking what can I do today to improve my health and believes there is hope...well, it just won’t work out unless it’s their own deeply held vision.
You can, however, help them chase down their vision once they have it. For example, if your loved one no longer eats any processed food, don’t offer it to them! Or better yet don’t bring it to the house or even eat it in front of them. I read all the books and tried to help with meal planning (this is not strength of mine I am still working at it). Anyway if you want someone to feel supported in a positive vision of their future– participate!
He reached out to the MS community and sought out resources that changed his lifestyle. You might be wondering, what was the result? He got better, much better than before he got the virus in the first place. He lost weight, gained muscle and a much better outlook and attitude. Now I think he knows that he has control and accountability for the way that his disease progresses. Not to the extent that we may like (go away forever MS) but he can control how much energy he puts into his health and this CAN directly impact outcomes. It is a lesson that we can all benefit from. You can get results that you are willing to work for. Thanks to my strong man! Looking forward to a million years of putting in work right next to you!
Multiple Sclerosis is a little known disease, until you receive the diagnosis. If you were like our family when we heard that our daughter was stricken with this chronic disease, we assumed that MS would not severely alter her life. After all, Multiple Sclerosis may alter her physical capabilities, but she will be able to live a full life while learning to overcome the physical limitations now facing her.
After a few years, we were given a dose of reality to the cognitive challenges that often accompany MS. As an adult, I can only imagine that there are a wide variety of MS specialists ready to aid you on your journey, fully educated about the ramifications of your disease. Having a child with MS did not give us that base of knowledge, especially when it came to her education.
When our daughter was diagnosed at 10 years old in 1999, it was not even believed that children get MS. This led to a school system which had no idea what to expect of our daughter and her capabilities, or lack thereof. We were very lucky to have a school system that was cooperative in assisting us, but since we were in the dark about cognitive difficulties being caused by MS, it was like the blind leading the blind. I think back to times when the school staff tried to get her to act like other students her age, not knowing the MS would cause her to “have no filter” and she would not be able to easily alter her behavior. It was about 3 years into our journey that she had her first Neuro-psych exam and we and the school realized she was no longer a main stream student. She was able to receive all special needs services as her cognitive abilities declined as she grew older, thanks to a school system who fought for her instead of thinking we were enabling her.
We know of many kids today that have been diagnosed with MS that are in constant battles with their school systems. Neuro psychological exams have helped, but it is a work in progress for schools to realize the impact MS has on a child’s educational needs.