The Slow Loss of Ability
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Since transitioning from relapsing-remitting to secondary-progressive multiple sclerosis (SPMS), I have, over time, literally lost my ability to do certain things. I’m pretty sure I can track how I got here. I will give you a couple of examples of how things have evolved and become what they are today.
My Tongue Gets Tired When I Speak
My speech is a perfect example of losing an ability slowly over time. First, I lost the ability to control my voice box, then I noticed that my tongue, a muscle, got very tired the more I spoke. Both of these changes affected my intonation and the ability to make speech flow. And things did not stop there: My ability to swallow was also affected.
My speech therapist was brilliant. She enlightened me on all the mechanisms that MS had affected. One time I told her that I kept biting my right lip. She observed that that was my affected side and that it was flaccid and needed to be woken up. So now, before I start chewing, I run my tongue along the right cheek, which wakes up the entire apparatus — cheek and lip. Since starting this, I have stopped biting my lip.
Just as fatigue can make someone with MS feel like they are wading through quicksand, it can also lead to dysarthria, or trouble speaking. My tongue gets so tired that it feels like it is wading through quicksand in my mouth. My speech therapist called this “drunk speech.”
What a person does naturally, I can’t anymore. How unfair.
Talking on the Phone Makes Me Self-Conscious
It is difficult for me to speak on the phone, whether to make appointments or just ask a question. I am so self-conscious now, because the person on the other end knows something is up with me. My speech therapist taught me to “segment” my words, which means to take two words at a time and pronounce them carefully. As far as intonation, the speech therapist asked me to use a sing-song approach in my sentences. I guess that would make my delivery less robotic.
However, now, if my phone rings and my partner David is around, he takes my phone from my hands, mainly because of intention tremors — the type that occur during physical movement — that make holding the phone difficult. He also knows that in addition to having intention tremors lately, I also get thrown off answering the phone. Often, he speaks for me, particularly if I am unable.
Now that is a huge change in my life. Something as easy as answering the phone is no longer easy. I really feel like I cannot control my hand movements or my tongue.
My Tremors Worsen in Cold Weather
Speaking of tremors, I’ve started to notice that with temperature extremes, my tremors get worse. For example, on a day when the temperature was 5 degrees F — colder than it had been all winter — I felt that I was shaking on the inside of my body, and that has never happened before. My intention tremors have also increased. All the shaking makes it hard to do tasks such as typing or writing.
There are also days when a hand-to-mouth action is nearly impossible. This includes eating, and drinking. I know this is all because of the damage that has taken place in the cerebellum in my brain. To cope, I use straws to drink and weighted forks, which help calm the tremors, to eat.
On a Bad Day, I Can’t Shower Independently
There is something else I want to mention. There are days when I like to take a shower like everyone else does. But those days have changed, as I slowly watch my disease progress. My balance and posture issues became harder, as my foot drop made it slowly impossible to exit the tub. My ability to stand slowly went away.
That brings me to today. Now I require someone, namely my privately hired CNA (certified nursing assistant), who does everything from watching me going in and out of the shower as I briefly stand, to completely cleaning and showering me on difficult days. I never ever thought this would happen.
On “good” days, I take care of my needs in the shower but prefer someone to spot me going in and out. On “bad” days I am helpless and require having everything done for me.
Uncooperative muscles make it imperative to have help with activities of daily living, no matter what kind of day I am having.
The Need to Find Workarounds Is Constant
This is what progressive MS looks like to me. It’s all happening because the body is waiting for orders from the brain that it is not getting. Showering and speech impact everything I do. A secret part of me recognizes the struggles involved in everything I do. I have even meticulously worked out how to do things like learning to balance myself to stand against my bathroom bar to pull my pants up instead of using two separate hands to do the job. I tell myself that is admirable, but the brain isn’t telling the body to implement my plans.
I’m not the only one that progressive MS has affected. The other person is my caregiver-partner. He, like me, never asked for my shouts for help in the early morning or at other times, or the degeneration that has come with progressive MS.
Still, because of neuroplasticity, my brain keeps rewiring itself to keep up with the constant demands to somehow find workarounds, and for this I am very thankful.
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