| When you have a serious illness like Parkinson's | | | | for patients? Do they have a section for "Ask the |
| Disease, learn to be your own advocate. Research | | | | Doctor?" Do they offer literature you can download |
| the disease and its treatment. Learn what questions | | | | or send for? |
| to ask. Discuss what you have learned with your | | | | The National Parkinson's Foundation (NPF) is an |
| physician. | | | | outstanding resource. In addition to "Ask the Doctor," |
| 1. When you have been handed a diagnosis of a | | | | they have "Ask about Nutrition," "Talk to a Speech |
| serious illness, head for the internet and the search | | | | Clinician," "Ask the Surgical Team," and "Ask the |
| engines. Key in the name of the illness. Find articles on | | | | Pharmacist." NPF also offers open forums for |
| the symptoms and treatments for the condition. Find | | | | patients, caregivers, and for young onset PD. |
| out what questions to ask. | | | | 5. Is there a local support group available to you? I |
| I was diagnosed with Parkinson's in 2004. I learned | | | | live in Pocatello, Idaho and started a support group. |
| about the meds. I borrowed library books, browsed | | | | My neurologist was affirming and helpful. She handed |
| the web, found research reports. My questions | | | | out flyers to her PD patients. I sent flyers to other |
| related to meds and their benefits and side effects. I | | | | neurologists and to family physicians. I sent notices to |
| wanted to know what course my illness could take. | | | | the local newspaper and to the local radio and TV |
| And of course I wanted to know the prognosis. | | | | stations. |
| 2. What do the research reports say? I learned about | | | | In addition to gaining the backup of my neurologist, |
| the promise of stem cell research. I read about deep | | | | the next step was to arrange for a meeting place. |
| brain stimulation. The most helpful research had to do | | | | The community meeting room in our public library |
| with the role of speech therapy and physical therapy | | | | works well. We meet on a regular basis of once a |
| in improving quality of life and even in the possible | | | | month. We are able to serve refreshments. |
| delay in the progression of the neurological disorder. | | | | We bring in guest speakers, and we have social |
| 3. Where are the leading medical centers? I learned | | | | events at each other's homes. The first year I |
| about Mayo Clinic in Minnesota and decided to go | | | | coordinated the meetings. The second year, one of |
| there for an evaluation. For your illness there may be | | | | the caregivers became the coordinator. This year |
| other centers, such as Cleveland Clinic. | | | | several members are sharing in the workings of our |
| 4. Find the links to the associations and organizations | | | | support group. In three years our group has grown |
| dedicated to the illness you are living with. Explore | | | | from five to twenty-five members. |
| what each one offers. Do they have open forums | | | | |