At least once a month, someone contacts me to talk to them, their co-worker, relative, friend or acquaintance, who was recently diagnosed with Parkinson’s Disease. I always try to find time to talk to the newly diagnosed because it is so important for them to connect with someone who has Parkinson’s as soon as possible. I am not a psychologist or a social worker, but I have lived with PD for almost 10 years. As a result, I have a different perspective to bring to the table. It makes such a difference to speak to someone who has been living with the disease, who can understand what you are going through and help guide you through the labyrinth of PD terms, treatments, and more. But most of all it helps to see someone who is thriving in spite of the disease. Most people have never met anyone who is living well with PD, so they are scared about the future, the great unknown looming before them. It can be so overwhelming. I wish there had been someone for me to talk to when I was newly diagnosed. Instead, I had to rely on the information I could find through books and the internet. And not all of that is very reliable.
So how much did you actually hear after the doctor said those three little words: “You have Parkinson’s”? If you are like most people, you did not hear anything else for the rest of your appointment. Your doctor hands you a prescription and maybe something from the Fox Foundation to read, and says come back in three months. You get home and you have no clue what the future has in store for you. The three months until your next visit can seem like years when you finally start thinking clearly enought to realize you have so many unanswered questions. This is the time when having a patient mentor to talk to is so important.
A patient mentor can help you ask the right questions on your next visit to the doctor. They can empathize with you because they have been there too. Often, a newly diagnosed Parkie is much more comfortable speaking to another Parkie than their doctor. The patient mentor can suggest strategies that make life easier. And they can help make suggestions for what to ask at that next appointment with the doctor.
I met with someone yesterday who was diagnosed a few weeks ago. I have actually known this woman for years, and know about the back problems that she has had. She started asking questions about medication, exercise, anxiety, what to expect, what resources are available to her. Her doctor said to exercise, but did not give her specific instructions about how much and what type. We talked about what would interest her and I was able to give her some options that would work, all the while thinking about her limitations because of her back. We then discussed the need for her to contact her doctor before her next appointment in two months. She has a lot of questions for him, but was afraid to call now. I suggested that she either call him or email her questions to him now, because she really needed the answers sooner rather than later. Like many patients, she was intimidated by her doctor, and was afraid to ask for help when she really needs it. For a newly diagnosed Parkie, this can only increase the anxiety that the diagnosis itself brings to the picture. It is important to remember that this is a doctor whom you will have a long term relationship with, so you need to be comfortable reaching out to your doctor between appointments.
I know that some communities have a network of Patient Mentors for the newly diagnosed to reach out to. If you don’t know who to turn to, ask your doctor if she can have someone get in touch with you. If she cannot help you, reach out to a local support group leader or a national PD organization. Many of the Parkinson’s organizations now have a Patient Ambassador program and can refer you to someone who can speak to you. You don’t have to go through this alone. We are all there to help each other on this journey we call Parkinson’s.
Don’t forget to write your message of hope to be included in the Soaring With Hope for PD project which will be displayed at the WPC in Kyoto next year. Click this link and enter your country and message. And make sure you click on my name for the Blogger’s Challenge. Go to last week’s post for more information.