When first diagnosed with Parkinson’s disease, you don’t know what to do, say, or whether or not to cry. I know this because I have been there. At the doctor’s office, I just sat there numb while my husband had tears running down his cheeks. When I finally could speak, I asked the doctor what was next. I was given a prescription and was told there would be further testing to see if they could rule out PD. Then sent me home, prescription in hand, and told to come back in 3 months to see how the meds were working. Nothing of what I am about to say is negative against the doctor. The doctors are way too busy to sit down with you 3 or 4 more hours to give you the details of your diagnosis. So, I was lost. On the drive home, it was silent, except for my question of “How we going to tell the kids?” At the time, one was 18 and the other 12. I told my husband there was no way I could tell them. He took care of that later in the evening. To much of my surprise, they were both fine with it and here I kept saying to myself “Why Me?” Luckily, they had both learned about Parkinson’s in school, therefore, that gave them some advantage of not having to rush out and get a book. That is just what I did. I really like “Parkinson’s for Dummies”. The next few months went extremely slow….not sure if that is really possible….put it sure felt like it. I seemed to be doing well on my meds. I wasn’t falling up stairs or having that slight tremor, however, I was having other problems. When I went back to doctor, he asked how the meds were working and if there were any side effects? I was asked if I had any off-time….???….what? Did meds wear off before you took the next one? I had no clue what he meant and he replied that I would know if there were off times….well, I didn’t know for months what that really meant. He never told me to track my meds and if he would have I could have known that he meant “do the meds wear off before the next dose?” and I would have recorded the on/off times. I knew I was having hot flashes and sweating, however, I didn’t mention those side effects because people I talked to would say it was menopause even though I went through that several years before and come to find out 4.5 years later, I was told that is part of PD. Therefore, I wish I wouldn’t have listened to other people and spoke with my doctor about it. It could of been taken care of sooner. Below is a list of things I wish I would have known after diagnoses.
List of 10 things to do after you are diagnosed with Parkinson’s disease (PD):
- Go home and relax. I know that sounds impossible, but if you stress it will make your tremors worse. Some of the things that will help are take several deep breaths, warm bath, mediate, sit in dark room, or call on someone you can confide in, a great listener, and will cry with you.
- Once you are composed, go to public library and pick up Parkinson’s for Dummies. Keep in mind, every PD case is different. You might not have the same symptoms or medication as the next PD patient.
- Watch out for the family, friends, co-workers that know someone who has PD. They might say “my friend is worse than you”. Or they might say “you don’t look like you are ill”. Well, how do you look when you have a chronic progressive disease? Everyone is different. I kept most of my “feel bad moments” to myself. In today’s society, most people want to talk about themselves, so I would be polite, say I was doing fine, and allow them to carry on with what was going on in their lives. I’m not going to do that anymore. I’m going to speak out and have my voice heard and so should you.
- Look up Parkinson organizations in your area. Call them to find out what they offer. You will be overwhelmed with all the information they can supply. Make an appointment to go there to discuss PD and pick up information to take back home and review. Look up on internet National organization for Parkinson’s. Review their websites to see what they do and offer.
- Start tracking medications, side effects, symptoms, and questions for your doctor. Journal in a book everyday. It helps with knowing what is going on with your Parkinson’s.
- Get familiar with your Neurologist. Make sure he/she specializes in PD and/or movement disorders. This doctor will be one of the main players on your medical team. It is very important to make sure you feel comfortable and confident about this doctor. I went through two Neurologist before I found the one I felt at ease with and was confident she would be on medical team. Keep in mind, you are the one in charge of your decisions.
- Change is inevitable in your life now. It might be a few changes or you could be like me and take an 180 degree change in your life. One of my family members didn’t understand that why I had so many symptoms since her friends’ husband had it for 20 years and was still working at his same job.
- Eating right is very important in life and even more important when you have PD. Ask your general practitioner to refer you to a nutritionist.
- If you don’t move it, you lose it. You need to get on an exercise program that is tailored for you and your PD. Find a Personal Trainer in your area that is familiar with PD. Make sure he/she knows the importance of safety, balance, and stiffness in PD.
- Now, 3 months later, go back to doctor with your tools. You have written in your journal for almost 90 days. Review it the night before and mark on the next blank page the current date, doctor’s name, and questions you want to ask at your appointment. Hopefully, you will have someone with you that will jot the answers down immediately. I also logged any changes of meds , time to take them, and with or without food. I also had my tracking sheet to show the doctor. It makes your appointment go so much smoother and you don’t forget what to ask or what is said.. P.S. I also put my blood pressure and weight in the journal. Best of Luck!
© Written by Mary Killian