Woman with questions circling around her head.

“My Doctor Says I Have Parkinson’s! Now What?” Q&A for the Newly Diagnosed: Part 2

Read Part One here.

What should be my role in my treatment?

Your treatment is comprised of a team. You are the head of that team. You are the one that knows what is going on inside your body. Be able to communicate that to the people who spend maybe 15 minutes with you every 6 weeks. Do not be afraid to ask questions, make statements, or request certain things to be explored. If you have a doctor who seems unwilling to have you as a team leader, it is time for a new doctor.

Are there any tricks I can do to help with side effects with the medications?

Some of the medications we take often have some side effects that go along with them. Some will dissipate as you body adjusts. If you feel nauseous after taking your meds, try taking them with small amount of soda. Also have someone wake you up slightly to take your first dose and then go back to sleep to allow the effects to be slept off. When on sinemet, watch your protein intake near medication time. The protein can inhibit the usefulness of the medication. If side effects persist alert your doctor.

Where can I get help understanding this disease?

Arming yourself with knowledge is vital! We suggest that you try to connect with others as quickly as possible, it will help you know that you are NOT alone in your journey.

Also, finding out as much as you can about PD and the treatments are just as important, it will make it easier on yourself and your visits to the neurologist if you have a working knowledge of the PD. There are numerous Facebook support groups including

Facebook groups

  • Movers and Shakers
  • Caregivers' of Parkinson's Disease Support Group
  • YOPD Forums Parkinson's Support

There are several more as well.

What can I do to convey my problems to my doctor?

Begin keeping a journal of the events occurring with you. Each day, mark down what kind of symptoms you had, how your day was, and if you had anything out of ordinary happen. Use this journal to compile questions for your next visit to your neurologist or Movement Disorder Specialist.

Body, mind, and spirit

Whatever you do either as a caregiver or a person with PD, do NOT give up! There are a lot of trail blazers out here that have come before you that have opened pathways that were once closed, connections that were once thought impossible, and the ability to help. That is not to say this is easy, but you are NEVER ALONE! It is not just about keeping your body going, but your mind and spirit as well! Take time to have fun, learn new things, keep mindfully active as well as physically active.

Parkinson’s is NOT a death sentence! With good medical treatment, exercise, diet and support the outlook can be pretty good! I know from personal experience, my husband and I both have young onset Parkinson’s disease and have been on this journey for 22 and 20 years respectively!

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