Imagine an electrical wire with tiny little wires bunched up together in a plastic covering called insulation. The plastic insulation helps the electrical signal travel down to get to where it is supposed to go without interruption. Without that insulation covering, you get a short circuit – ZAP! This is what happens with Multiple Sclerosis (MS). In MS the wire is the nerve. Nerves are made up of hundreds of smaller nerves bundled in ‘insulation’ called myelin. Simply put when you have MS you have lost the insulation surrounding the nerves.
On November 28, 1998, my husband was diagnosed with MS. He will tell the story with such vividness about how it came about, unknowingly. First, a buckle in the knee while running across the street unto the curb. Odd. Very odd, then a numbness in his fingers while he was out doing yard work, a 45-degree shift in vision while driving on the freeway/motorway, basically, all the cars and the road just flipped to their side, and he had to pull over. Strange, alarming, odd, weird. Yep, all of those. So, he goes to see his general practitioner/primary care physician who had no idea whatsoever what these symptoms were. The GP suggested he take Vitamin B. He takes those for 6 months. No change. Nothing!
Brian will tell the story of how he was in a restaurant one day, as fate would have it, and within earshot of people eating and discussing symptoms someone’s daughter was having, quite similar to what he had, and they’d mentioned that they had to go and see a neurologist for testing. At his next appointment with his GP, Brian asked her if he could have a referral to go see a neurologist. The neurologist sent him to have an MRI test and when he returned for the results, the neurologist said that based on his experience with ‘the disease’ (didn’t say what disease) and the films of the MRI, Brian would be in a wheelchair in 11 months.
It was not until 7 years later that he found himself hospitalized for a month. He was discharged from that hospital requiring a wheelchair.
Therapy visits, a nearly fatal accident on the way to his first MS support meeting in the metro access, the development of many more symptoms afterward – tremors in his right hand and so he couldn’t write unless he held his right wrist down with his left hand, restless leg syndrome, spasticity, double vision, overly sensitive to heat, overly sensitive to loud sounds, everyday shots to keep the symptoms at bay… was the battle ahead.
Eventually, some of these symptoms would get better and some would get worse. He has gradually gone from being able to stand and walk with a cane (when I met him), to using a mobility support walker, on to a manual wheelchair and now to an electronic wheelchair. Basically, my husband’s mobility has declined drastically, and he is now 100% solely dependent on the electric wheelchair and cannot stand up. The inability to stand up and move around also come with its own problems – loss of strength and muscle mass, stiff joints, balance and range of motion difficulties, pressure wounds, and poor quality of life because now, we can hardly really go anywhere with him. Temperature, sound, and leg spasms are controlled with medications but the side effects of all these medications is that’s another story, and we have gone through hell and back and still wading through fire every single day.
It is really not a secret that living with MS can take a toll on your daily life, but for people who are diagnosed early in life like my husband Brian was at the age of 31, 24 years ago – good-looking, athletic, sharp, witty (still), hardworking young man – it can be devastating. It can be very hard to wrap your mind around not being able to do much for yourself or your family. One moment he walking fine and the next he is needing mobility aids to get through the day. He had no doubt he was going to beat this disease. He was healthy, strong, athletic, ate well, and took care of himself. He did whatever he needed to do and more, but he couldn’t beat this disease, and he is still fighting it with many challenges (and I do not want to go into the roadblocks we have encountered with the healthcare system in this country and trust me, it is not for lack of trying). It looks like MS has won. Every day is a new, difficult, and different struggle. Brian is still fighting. We as a family are still struggling. People ask me “can’t he do this, can’t you do that, why won’t you talk to this, why can’t you do this or that.” They mean well, and we’ve tried everything, but this is neurological and not physical, and so far, there is no cure for it. He did not just break his legs and needs physical therapy to heal and get stronger/better. No, your brain does not communicate at all with the part of your body that is afflicted, in my husband’s case, his legs, so no amount of PT, or OT can make your brain talk to your part of the body. People just don’t understand. His MS is secondary progressive, which means his neurologic function (accumulation of disability) worsens over time. It is tough for the children to see their father decline. I too have my days. My days of utter frustration with the health care system and with the disease. I have a full-time 8 – 5, Monday – Friday job at the University (for which I am grateful because we could not afford the medical bills on our own 😳), supporting 2 very busy executives.
MS has really challenged us in many ways, especially Brian. To go from standing and walking to not being able to do either, not being able to drive, or shower himself, lying in bed is a struggle too because he cannot get up on his own and basically becomes a paraplegic in bed.
But in all things, we give thanks to the Almighty because in spite of it all we have each other and I get to do the things I love to do with Brian’s support and appreciation: read, bake and cook with the children, we dance while we cook in the kitchen. I love to garden, draw and paint in the summer with the kids, we do fun projects, and watch movies together.
MS is a very unpredictable disease and so we take it one day at a time! We are still waiting for a miracle!
