How to Cope With Cerebral Palsy and Functional Decline

Aging is inevitable. It is something we are blessed to experience, especially if we are given the opportunity to live a long and fulfilling life. As we age, our bodies begin to break down. This is natural. However, when you have cerebral palsy as I do, aging seems to happen at a more advanced pace as the result of the increased wear and tear we expose our bodies to daily.

This can be an exceedingly tricky situation to handle. There is nothing that can be done to prepare you for the abundance of conflicting emotions you will feel as you watch your body changing before your very eyes. In my experience, there will be times when you are going to want to roll into a corner and just cry and scream. The load will be heavy, and you will also lose relationships you once valued as your limitations increase. This will hurt. Some days will be easier than others, but the sting will become ever-present.

I understand that cerebral palsy is varied and affects everyone very differently. Therefore, the number of changes you will feel will vary greatly. I have always thought of my cerebral palsy as a moderate case. I am almost 38 years of age, and in my younger years, I was blessed to be independent. I was able to bathe and clothe myself. I was able to crawl to get around and used my wheelchair to get around otherwise. I will not pretend like I was not fortunate. I know that there are people who have much more involved disabilities, and I never let that thought escape my mind, not even once. I treasure my functionality even more in the present now that it has dwindled.

I wish I had a magic wand that could reverse my osteoarthritis, my hip dysplasia, and my knee tendonitis, but I know that is not how life works. Throughout our entire course with cerebral palsy, we are told that our disability is a pediatric one because we are typically diagnosed at birth. The brain damage present at birth does not change; this is true, but our bodies change due to the strain that spasticity and other CP symptoms put on them. However, I believe that medical professionals should be more diligent when considering the residual effects of cerebral palsy. It’s not something that is included in their initial training but should be added. I am not sure what doctors could do for us down the line clinically, but I think they could be a source of comfort for us as we age and start to see the significant progression.

I wish I could be the person to tell everyone who is affected by this how to cope, but I know that this is not possible. If I were to attempt to offer some advice, it would be to truly try to take the progression day by day. There is nothing we can do about aging, but we can make it a little easier by taking it in smaller doses. You are going to have your days when you cannot manage to take the pain and the fatigue anymore. This is completely normal and even more so, acceptable! If you have had enough, just let the emotions go! You will feel better after the release, trust me! It is a wild ride, and we must make sure we buckle up! The good news is that we are in this together. We may choose to cope differently, but we are never alone in our journey. If we can tough it out to see the sunrise and the sunset, we are doing something right!