You are sitting across from the doctor. You don’t notice that his desk, newly waxed, is void of disorganization. Focused on the fact that you now have PD, fear begins to envelope every inch of your body. From head to toe, you sit frozen and numb.
What does that mean? Am I going to die? Should I make a will? Will I be able to keep working? What’s going to happen to me? Will I be a burden to others?
Fears are normal. Fears are a part of life, even if you were not just diagnosed with a chronic disease. Now, since we brought that up, let’s look at that aspect of the disease first.
Parkinson’s disease (PD) is not a terminal, but a chronic disease. The difference is that with a terminal disease, the patient is usually given an estimate of when they can expect to worsen or pass from the disease itself. A good reason to be thankful that PD is chronic and not terminal. With PD, however, you are dealing with a chronic disease. Yes, it is annoying, persistent, sometimes unrelentless, never-ending and can cause complications with other health issues, but it will not kill you.
So, take a deep breath as we face another fear… What does PD mean?
Parkinson’s Disease, put simply, means your brain doesn’t work the way it should, specifically in regards to producing dopamine, a chemical that is relevant if you want your muscles to mind you. Since it does not do what it should, a drug therapy treatment is set in motion to psyche out your brain into thinking it has what it takes to be normal. This will need adjusting every now and then, but so do our backs.
So, take another deep breath and let’s face another fear… Should you make a will?
Whether you have PD or not and are of an adult age and especially if you have a spouse and/or kids, definitely make a will. Don’t do it because you’ve just been told you have PD because we have already established you’re not going to die from this little monster. Do it because you love the ones your with.
Another deep breath is in order as we move on… Should I quit working?
That depends on you and how you are doing. Every one is different. You may have stepped into the doctor’s office for any number of reasons. Maybe you’re exhausted and could not find a reason to explain the recent falls. The tremors? Speech had changed? Something else? If you are still capable and love your job, stay. Numerous PD’ers are still going strong at work while they fight this thing. Some find they are exhausted from both the disease and having to work, and they then do not have the energy needed to give to their family. Prioritize. Maybe the best thing is disability. That’s not a bad thing. It means you are taking care of yourself. However, be advised that the disability process can take time, so be patient and consider starting the paper process for SSI before you have to..
Aahhh… onto the next fear: What’s going to happen to me?
Everyone fights this little monster differently. Some deal with tremors as the predominant symptom. Others suffer with some degree of pain. Some are blessed with the inability to be heard or to smell (the sniffing kind of smell). There are other factors that can come into play, but the important thing is to find a neurologist who specializes in PD (a movement disorder specialist) and one whom you trust. He’ll work closely with you to find the best treatment for your individualized care and it will look different from everyone else with PD as PD is an individualized disease and has many faces. So, how to answer the question of what’s ahead? You take one day at a time. Do not stop exercising (or start excercising!) as it has been proven that staying active can lessen some of the symptoms and sometimes lessen the medications needed to fight the symptoms that are there.
Finally, the fear of being a burden…
What is a burden? A weighted load. A problem. A drain. That sounds like a terrible thing. Just because you now have PD, it does not make you a burden. You have not become a problem but now have the opportunity to reach out to others with a like condition and understand their plight and come alongside of them and be a friend, a help, a support.
You now have the opportunity to make others more aware of this little monster, because where once you barely knew what the letters PD meant, you know now much more and can speak from personal experience to bring attention to this disease in order to help find a cure.
You – a problem to others? A drain on their life? No. Unless you choose to be.
Keep your head up, keep smiling and if you weren’t the smiling type before, learn to do it now. Someone else needs you to come alongside of them when they walk out of that doctor’s office and you may be the only one that understands how they feel.