So, maybe we’re a little tardy, but whatev.
Here’s some answer to your questions – more to come at a later date – and keep the questions coming!
How does the MS affect Gary’s daily life.
MS has totally changed my life. Everywhere I go I have to look for the easiest route. For example, I have to look for the escalators (fellow DCers know that the escalators on the metro break all the time!!! So then I have to find the elevator). I have to plan extra time. I just recently went to Annapolis and gave myself an extra 45 minutes so that if I had to park far away I could have enough time to stop and rest while walking to the State House.
I can’t take hot showers and that sucks in this cold weather.
I can’t wait tables or tend bar anymore. That was how I’ve made money for the past 8 years and so that’s really tough. I have to exclude jobs that include being on your feet, a lot of walking, etc. from my search. You probably are thinking – what job requires a lot of walking, but think about it.
Sometimes I get dizzy or fatigued and I have to stop what I’m doing and go sit or lay down. This can disrupt my day.
How much does it impact him at its worst?
At the absolute worst? I’m paralyzed. My left leg is paralyzed. I can’t move. I wake up in the morning or sometimes it comes later in the afternoon (it occurs at different times) and I feel like I’m going to collapse. I guess it’s part my leg, part fatigue. The winter has been better, and I haven’t felt this bad as often. I think I’m very sensitive to the heat and humidity.
But, at it’s worst, all the muscles in my leg are crampy. And it can’t be remedied by stretching or rest, it’s just THERE. It’s like a Charlie horse that doesn’t go away. Ouch, right? The pain is predominantly on the front of my ankle and my lower calf – it all cramps up.
Other “worsts” include extreme dizziness and fatigue. I sometimes get an MS hug which causes my back to feel crampy and achy. Again, with the achiness, crampiness and stiffness affecting me physically and then the fatigue and dizziness making me just generally out of whack – I feel like I want to collapse. And I have collapsed – luckily no major injuries thus far.
The worst only occurs like once every two weeks, but when they all decide to visit on the same day…that would be considered a very bad day.
Throughout the past 6 months, I’ve gotten to learn a lot more about my limits which I think has also been helpful. I know the signs to look out for when I’m overextending myself and the symptoms I experience telling me it’s time to take a rest. This, matched with the dry cold of winter, has been helpful.
What are some of the long term conditions that Gary might face?
If he doesn’t get better or maintain his current health what can be expected? Worst case? Best case?
Well, we’re all going to die at some point. For Gary, the MS could attack the nerves that control the heart rate and lungs and he could have a premature death. If they continue to attack his nerves which direct his leg he could end up immobile and eventually maybe even bed-ridden. When this happens, the next step is usually a premature death.
But that’s the worst case scenario.
Hopefully, with the medication it will stop any further lesions from occurring and slow down those that do occur. If it works as well as we hope it will Gary shouldn’t experience many more symptoms anytime soon. 90% of people diagnosed with MS have a normal lifespan and if it is shortened, it’s only by 5-10 years. Gary could continue to lose function of his leg, and his memory could be impacted as well as his other cognitive abilities, but the medication should prevent that from having anytime soon.
That’s it for now – if you need more clarification let us know.
Thanks for reading 🙂
Gary and Sadie
Gary's Gang 