Stop hugging the floor! (My experience and tips to deal with falls)
While Multiple Sclerosis is often referred to as a snowflake disease because patients experience such a wide variety of symptoms and problems, there is one issue that is far too prevalent in many patients, falling. If you talk to many afflicted with this disease, you will find some terrible stories of the various falls they’ve had. Caused by a variety of symptoms, falling can be one of the most dangerous and terrifying issues that we face. We can take steps to prevent it, but for many of us, the risk of falling is one of the diseases most dangerous problems.
I have dealt with falls from the very beginning of my MS experience. It was one of the first issues that landed me in the hospital 16 years ago. I woke up one morning and just couldn’t stay on my feet. At the time, my legs would just become incredibly weak and give out. Pretty much without warning too. As I write this, I think back to how strange it felt, how weird it was at the time. I was in my early 20s, I was extremely active, I played hockey, I trained for marathons, I was fit. I had big strong legs, large thighs molded by years of skating for hockey. So how could I suddenly have trouble standing? Doctors had no idea what was wrong (one literally left me in an exam room to go look up symptoms in a book). They confessed they had no idea what was wrong and wanted to admit me to a hospital to run tests. Being a brash college student who thought I knew everything, I got up and said that was out of the question (I had a hockey game that night). I then promptly fell on my face right as I was trying to walk out of the exam room. I relented to the testing from the floor of the doctor’s office. My dad and the doctor lifted me into a wheelchair and I was taken right to the hospital, I wouldn’t be able to stand, let alone walk, for another week.
That was the beginning of falling and MS for me, but unfortunately not the end. It’s still very much an issue for me. While my symptoms were leg weakness during that first big relapse, I’ve had other times where balance issues were the cause of falls. Once, I had a relapse where my equilibrium was completely out of whack for close to a month. Others suffer from symptoms that affect their gait, or numbness in their feet such that they can’t tell where they are planting their foot, or spasticity (another issue of mine). A variety of symptoms, all leading to that common problem of not being able to stay on our own two feet.
The emotional impact of falling so often can be devastating whether you were formerly a very active person or not. How do you even start to process not being able to trust your own legs? I still have trouble with it. It’s been 16 years of this and I still think, to an extent, I’m in denial about it. I still fall often, usually unexpectedly. I can be standing in the kitchen talking to my wife and a second later be on the floor, not even sure what happened. The level of frustration when this happens is through the roof. It leads to such distrust in your own body. Climbing two steps might as well be trying to climb to the top of the Empire State building because that’s what it looks like to me. With the leg weakness, numbness, and pain, I sometimes look at those with prosthetic legs with envy, wishing I could trade mine out for something more trustworthy. And that’s it, they’d be limited but dependable. Having MS means losing trust in your own body.
The dangers of falling are not only mental but physical and numerous. Broken bones, concussions, even death can occur as a result of a bad fall. My penchant for falling is often one of my doctor’s biggest concerns. He reminds me of it every month at infusion time when he chides me for wearing flip flops and not shoes that are more stable (I love flip flops because the numbness of my hands makes tying shoelaces on regular shoes incredibly difficult). The physical and occupational therapists I’ve seen due to my MS have also expressed extreme concern in falls. They’re all right too, when you think about the possible dangers and end results of a bad fall, it can be extremely scary. Being more careful with regards to falling is something I know I need to be more mindful of. All of us with Multiple Sclerosis need to take falls seriously, myself included.
I know I need to do better, I need to use my cane more, wear better shoes, and probably get my wheelchair script filled. I need to do less “wall walking”, which is one of the biggest ways I compensate (and one few notice). I’m often proud of how I can get away without using the appropriate aids, and I know many of you are too. But we can’t be that way, we need to take the necessary steps to better prevent falls.
There are a lot of steps we can take to improve our chances of staying on our feet. Using a cane or other walking aid is a big one. Just being mindful about the layout of your house is huge (is that coffee table in the middle of the room a danger?). Wearing sensible shoes. Having the house properly lit. I’ll make an embarrassing confession to prove the importance of all this and because I think it’s legitimately helpful to other MSers. I keep a hand-held urinal next to my bed because I’ve had so many bad falls trying to get to the bathroom in the middle of the night. Seems embarrassing because I’m in my mid-30s but it’s insanely helpful. It beats the concussive falls I’d been having while trying to navigate to the bathroom at night.
Another very important thing I’d recommend is to see a physical or occupational therapist. They can help you work on tips to better prevent falls and also help with strengthening some parts of your body to help in the task as well. I’ve even learned the proper way to use my cane from one of these. Physical, occupational, and speech therapy are all very important but often overlooked ways of treatment that I urge all MSers to investigate. We can take medication for some symptoms, but there is no cure for MS itself. It’s a very important strategy to learn how to live with the issues you have and these therapists give you the tools to do that. I also can’t stress enough the emotional benefits you gain by actively working with someone to battle your disease and not just passively take a medication.
The dangers of falling, both mental and physical, are numerous and greatly affect the lives of those with Multiple Sclerosis. Many of us have had many experiences with falling but we can all take steps to limit those experiences in the future. Knowledge is power and the more we all discuss strategies for fighting falls, not only with other MSers but with friends and family, the better we will all be at staying on our feet.
How many specialists did you see before finding "The One"?