I will be 33 this year, and I’m starting to recognize changes in my body that aren’t exactly related to Pompe disease but to aging. I associate with many others with Pompe who are older, aged 40 and up. This conversation should be brought up because aging and Pompe both have to deal with getting weaker and body changes.
I know that I’m still young but sometimes I feel like having Pompe is making me age faster. When we get older, we grow into a routine and sometimes that’s not always a good thing. I think our bodies get older with routine, but unfortunately, that’s the reality when we have jobs and families. The thing about Pompe, whether on treatment or not, is that time plays a major part in deteriorating muscles, which is what Pompe does. And with aging our body begins processing everything differently.
Is this a problem to worry about? Absolutely not because aging is unavoidable, but health is something we can sometimes have control over. The biggest challenge in my life is being active every day. I’m not active every day and part of that is because I need someone to help me physically to be active and my guilty pleasure is comfort. I need to be comfortable and, of course, that’s ideal for everyone. But I think for me being in a comfortable position is pretty much being curled up, and that is a terrible position for someone with Pompe to be in for long periods of time.
Read about HCP resources for Pompe
As I turn 33 this year, I admit that I’m proud of my health and how my body is aging. It’s always weird for me to speak about age just because I look so much younger than most people, but I can feel the weight gain and the struggle to stretch, and the aches in my feet and hands. This is why it’s so important for us to keep active and healthy because time will break us down slowly if we neglect our health and as we get older it can get much worse. We see in this time so many older people who are in very good shape and that’s because they stay active. I don’t have the privilege to be as active as everyone else and that’s something that I worry about.
I want to encourage people who have Pompe or any muscle deterioration disease to take more control over their health. Everyone is living a different life but in my condition, since I am wheelchair-bound, I need a caregiver. Those who are like me have to take more control over their health because we get into the routine of allowing others to care for us in their way.
I know that my body is in serious need of exercise and a balanced diet, but I accept the food that is made for me knowing it’s not healthy. My body is gaining weight and, yes, I look healthy but I think we all know gaining weight has to be dealt with. Many people don’t know that I watched my dad deteriorate for years right in front of me. The strongest and healthiest man I know, aged and got weaker and sicker. It wasn’t Pompe, it was heart attacks, strokes, high blood pressure, diabetes, and so much other stuff.
Time brings forward our true health and we should take more consideration of that. Not so much worry about it but take more precautions. Don’t just go to random doctor’s appointments because it’s that time to see your doctor; go get tested and checked out outside of your normal routine. You really have to speak up about what you need and get the best care that you can at the moment. We always wait until the last minute because we are taught that feeling good is a sign of good health while the worst diseases are silent.