Losing your mobility to multiple sclerosis is one of the things that we must adapt to and, unfortunately, something we can’t reverse. Although some people improve and gain their mobility back, it's not always the case. As it progresses, MS causes changes in your gait, balance, and coordination.
Let's clarify that not every person that lives with multiple sclerosis ends up in a wheelchair or loses their mobility. But for the most part, many of us face changes to our physical body, like atrophy or loss of muscle mass and weakness.
Due to the interruption of the transmission of the signals sent from the brain to our limbs, these signals take longer to reach their destination, or sometimes they don't make it at all, depending on the severity of the nerve damage.
In the past, doctors thought that exercise was bad for people living with MS, until they figured that the less exercise we do, the more we deteriorate. So nowadays, exercise and movement are highly recommended to keep or maintain our functions. Also, our brain could forget how to use our damaged areas if we are not constantly reminding it. We need to keep our brain in check and keep retraining it.
There's no specific timeline as to when you’ll lose your mobility, if you lose it at all. Some patients lose their mobility early in their journey, others toward the end. So because we don't know when this will take place, we have to take charge and exercise as much as we can to the best of our abilities.
We need to keep in mind that exercise should be approached in a different way. We can’t allow ourselves to exercise to the point of exhaustion. A more conservative approach is usually more productive than exceeding your limits.
Now, what do you do if your mobility is very limited? Well, there are still ways to move. A physical therapist can help teach you and your caregiver exercises that you can do from your wheelchair or from your bed, safely. There are also plenty of videos online and free virtual chair-adapted exercise classes.
In terms of modifications to your home, I would suggest installing a ramp if there are steps to come into your house. Also, lifting the toilet or placing a commode over it. I personally need to hold on to the walls, so in the bathrooms, I replaced the towel racks with grab bars. I also installed grab bars in the shower and have a shower chair.
In my experience, a grab bar installed in an angle, diagonally, is safer than one installed horizontally. I found that if I fall, I want to pull myself up with my arms (from the diagonal grab bar), and not push myself up (from the horizontal grab bar), putting all my weight on my weak legs. Does that make sense?
I also keep several reachers around the house, to help me reach things up in the cupboard, or pick up things that I drop all the time. I have one walker in the car and another one by the garage door, for when I come into the house, it’s there for me. Things like these could simplify your day-to-day.
There are many items that can be purchased to, for instance, help you tie your shoes, button your shirt, put your socks on, and transfer from the bed to your wheelchair. They can easily be purchased on the internet and delivered right to your door.
On the psychological aspect, physical limitations can deplete your confidence. Many people isolate themselves just because they feel that they are incapable of socializing anymore. Everybody handles it differently, but it's certainly a very difficult situation to deal with.
If you add the fact that you have to use mobility aids or wear a brace or orthotics to help you move around, it makes you feel insecure and ugly. It takes time to accept the fact that this is what you need in order to stay ambulatory. Over time, you get the hang of it and start to get used to them, but in my opinion, you never fully come to terms with it. You just adjust.
Mobility issues can also affect your personal life. They can interfere with your sexual performance and compromise your relationship. It takes a very strong partner, a lot of love, and patience to overcome this hurdle. New adjustments need to be made in the bedroom to continue to have a satisfactory sexual life.
Not everybody is going to be capable of dealing with your physical limitations. So, some people in your life might start to fade away until they completely vanish. Well, those were not real friends. But I understand that this can be something hard to absorb. Some friends won't understand your limitations entirely, and you'll probably find yourself directing them, breaking down every instruction, so that they can help you. It takes time.
Your support network, like your family and friends, needs time to process your mobility issues as well. Don't expect them to get it right from the get-go. MS is complex, and it makes the process of understanding it a little more complicated. We live with it, and we don't understand how our body is behaving, let alone the people around us.
It takes a lot of guts to stick around and not give up. So, give them some credit and understand that at some point, they will get frustrated, tired, angry, just like you do. Open two-way communication is necessary and effective.
The truth is that living with mobility issues is one of the hardest things to accept after an MS diagnosis. It can cause depression, anger, and a sense of hopelessness. And sometimes telling somebody: “Don't give up,” “Keep going,” or “You got this” is not enough. You can fall into a deep, dark hole emotionally, and it can be really hard to get out of that mindset.
Learning to adapt and modify is a game-changer. We have to really put effort into trying to do the things that we normally do and enjoy in a different way. Sometimes we won't be able to do those things again. Then, it's time to let go. Focus on what you can do and not so much on what you can’t do anymore. Mind your abilities and not so much your disabilities.
Like a good friend said once: “Living with MS is not a bad life, it’s a different life.”
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
Photo Credit: Huntstock / DisabilityImages via Getty Images
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