I am an advocate of hope! How can you have hope you ask when your doctor tells you, that you have a chronic, neurological illness called Parkinson’s disease (PD). Oh yeah, and by the way, there is no known cure but you could get lucky. There is lots of research going on all the time. I’m all for positive thinking but give me a break doc. Okay? Luck has nothing to do with it, and dark times assuredly lie ahead but I’d like to take you down the road to Hope.
Hope is not just another descriptive word used to cheer up the depressed or tortured souls trying to get a handle on their symptoms. It is a word of action, a verb. It symbolizes being proactive in your situation; but, before we can understand the power of hope, we must understand what hope doesn’t represent.
Hope is not:
- Believing everything is going to be fine.
- A joyful feeling when you think about the future.
- Acknowledging only positive thoughts and ignoring the negative.
Hope is much more than a feeling. It is an attitude, a state of mind. It is being interactive about the care you receive. Consider this, every prescription drug you take can affect you differently. There are also side effects to have an awareness of. You need to interact with your doctors. Communication about how and what you are feeling when you take your meds. If necessary keep a journal of time of medication, dosage, symptoms, etc. Then, take this journal to your medical appointments and discuss with your doctor.
Hope is sharing with others. Don’t be afraid to talk to close friends, family, care partners, co-workers about your illness. It is entirely up to you on what and how much information you provide but human tendency is to help or assist but don’t be a whiner! Let people know when you can do something on your own and when those times arise, whenever you need assistance. Wherever there is independence in a few things or many, there is hope.
Hope is exercising. There is positive reaffirmation in staying fit and maintaining physical fitness. It is a scientific fact that exercise is important. From my first day of diagnosis, my doctor told me, “Try to stay active!” Not really an inspiring vote of confidence but she was right. Hope comes from those living with PD who remain active and exercise. I’d advise that you choose the exercise that you are comfortable with.
Hope is eating right. The proper diet is so important to living well with PD. Now hear me on this. I am not saying stop eating certain foods, but I am saying to rethink some of your choices. Maybe cut back on high protein foods, reduce the amount of saturated fats, meals high in cholesterol. This is good advice for everyone not just those with PD. For those with PD, some foods can interact with our medication.
Hope is so much more. Hope is engaging in advocacy, education and creating awareness about Parkinson’s disease. There are many more resources today compared to when I was first diagnosed. Several organizations, support groups, patient counseling, PD events, online sources like this one. You can pick and choose where you fit into the PD community. Remember, hope lies in active participation. It does not matter how young or old, whether newly diagnosed or have been for several years, there is always something you can do.
Hope for a cure
I can honestly say that I’ve communicated with many people just like you from around the world and we all have the same common question; how long before a cure is found? The honest truth is no one knows for sure. Medical research and the scientific community are working all over the globe to try to answer that question and although new cutting edge technology has resulted in better treatment options, a long overdue advancement toward a cure for Parkinson’s disease remains unclear. For me, hope is not a destination, it is a long journey of loss and gain and maintaining my quality of life for as long as I am able and to encourage others along the way. A cure for PD may be a long way off but having hope means making the ride better for everyone. Keep fighting and embrace hope!