Before we get into it, please recognize that these observations are made solely from my very personal and specific situation. I am 26 years old, I am verbal and I have a severe case of mixed quadriplegia – cerebral palsy, which unfortunately places me in a Doctor’s office more than I would like to.
First off – let’s begin with medications.
For me, medications are a must. I take many medications to combat the many ways cerebral palsy affects my body. Whether that is spasticity, muscle rigidity, or anti-depressants. All these pills are usually prescribed by different doctors, and most doctors are focusing on one area of expertise. So, they are not telling you the “side effects”, there is a difference between side effects on the bottle, the side effects because of the cerebral palsy, and the side effects when you mix all these drugs together. Add to that, different doctors have different opinions on what substances can be mixed and what not should be mixed. Like I have often said to my doctor, “I am on this, I am on this, and I feel good.” They tell me, “You shouldn’t be taking that and that together because that could lead you to stop breathing.” Which obviously is a really big red flag. Then I went to another one of my doctor’s who specializes in other area of cerebral palsy. I told him the exact same thing, and added what the doctor told me. He said, “That is absolutely not true, stick with what you are doing if it works for you.” So, basically when it comes to medication, this is what I do. I know how my body feels, so if I take a pill that is supposed to make me looser, and it does make me looser, but it also makes me overly tired, I will make that decision on my own. I will weigh the pros and cons. Pretty simple. Just communicate with your caregivers about how you feel and take their opinions as well. Lastly, when it comes to medications check with your pharmacist. They are better at reviewing your medication history as well as cross checking what kind of side effects may occur. Bottom line, just because your doctor says this pill will work on one of your symptoms, don’t take their word for it, if you start feeling weird. Tell someone.
I have had about 12 surgeries in my life give or take, ranging from minor to major. First thing you do, is find out what the surgery is. What it is literally supposed to do? Then find out what the process is of that surgery. How long will it take? What is the recovery time? Does it have any “side effects”?, and most importantly ask the doctor, if you were me, would you have this surgery? Always get a second and third opinion from other doctors as well as talking to someone who has had the exact same surgery and is in a similar situation as you. I would say that the majority of people that get surgeries always ask, what does it do and what does it entail. So I am going to focus the latter part of my questions. Okay, let’s start with “does it have any side effects?”. When I use the term side-effects, I am referring to whether said surgery, will affect another part of my body that should have nothing to do with the part of my body that I am having surgery on. For example – I had a spinal fusion surgery in 2006. I was 17. They told me if I didn’t have the surgery it would be life threatening in the future. Right away, you are automatically thinking that you should do it. However, they did not tell me that it would be painful to lay on my stomach. Which was my natural way of laying. So this effected my ability to sleep, my ability to have a regular bowel movement, so now I am uncomfortable and I really don’t feel any different than I did prior to the surgery. I went back to the doctor and explained to him my frustrations, he showed me an X-Ray of my spine and explained to me that my spine is straighter, but that my organs were still the way they were before my surgery. This would have been nice to know before I had the surgery. Obviously, it was necessary to have it, but I think preparing yourself mentally is one of the key ways to get you through surgery. The only way you can do that is if you have all the information. When you go see a surgeon, they are going to tell you that surgery is the end all be all option. Which makes sense, because thats what they do. Let’s say the surgery is less life-threatning than the one I described. In this situation always ask the question, would you have this surgery if you were me? Not your kid, or your mom or dad, wife, etc. You. That answer should be taken into consideration. I once had a doctor tell me that he could make my hands (which are deformed), look normal. I asked, “Would they function better?” He said, “Nope.” Which I replied, “Have a nice day. You look very nice in a lab coat, but I choose not to have surgery.” What an empowering feeling to choose.
Therapy may be the most important thing to consult with your doctor about. Here’s why you consult with your doctor and not a therapist. You need a prescription to get therapy. When I was little I went to therapy three times a week, PT, OT, and speech. We won’t get into speech here. It was all about stretching and building up your muscles. For me, going to therapy was all about making my body feel better, i.e., looser. At some point, I was about 22, I could no longer go to a pediatric center. So, off to the doctor I went. I said, where do I continue to go for therapy? He said a rehab center. Now here is the difference. At a rehab center you need a goal, which would be something like, we want Mike to be able to walk better in a gait trainer. That is unrealistic. Everybody in my family knew it was unrealistic. So, the goal was to get me therapy. To make myself looser. Here is the difference – that is not a goal. The PT at the rehab center, still connected to the doctor, would not stretch me for the sake of stretching. He would create a program in which, he would create exercises, show my family the exercises over a period of a few weeks, then send us off back home to implement them. Here is the problem with that, if you are a PT you know exactly what you are doing to get the best out of a stretch. Your family or caregiver are not trained in physical therapy. They don’t know how to get you the best stretch. They are afraid of hurting you, which makes perfect sense. Also, they don’t have the equipment or the space you need to get that stretch. So, off we go back to the doctor. Explaining to him that this is not going to work. He says, “Well, that is the only option we have, by the way, you are still getting really tight by the day. It might be time to look into another surgery or try this new pill.” Of course this new pill comes with a laundry list of side effects and does the surgery, even if they don’t know what they are.
So, here I am stiff as a board, strapped to a piece of furniture, wanting nothing more than to feel better, just so I can get through the day. What do I do when the doctor runs out of options? Unfortunately, that is where I am right now.
Rollin’ to a town near you!