You might be wondering how can I get the most use of my specialist’s time? How do I convey the entirety of my journey and it’s impact? How do I quickly get this doctor up-to-date with a complicated history, my wishes front and center, while helping that same all too human doctor cross-reference the copious medical files in their brain? The short answer: you prepare. You’re the expert as to how you feel inside your body and prep work can save so much time and frustration. This is how I got ready for my father-in-law’s first visit with the movement specialists before his eventual diagnosis of Parkinson’s with Autonomic Dysfunction.

Gathering the data. This part is a bit of a mess, because it involves throwing all your observations and data into one metaphorical pile. Get a bunch of scratch paper and write, speak into a recording device or type down your observations and conclusions (may be listed as the “Impression”) of any results (radiology, procedures) you have available. I found it easier to write whatever came to mind in one sitting then return to it in a couple days. If comfortable, your spouse, family members or friends can add their observations.

Compiling the data. Roughly organize the information into chronological order or a form that’s easy for the doctor to quickly review. (Make a copy for the doctor for reference). Next, write a paragraph that creates a picture of how you appear (physically and emotionally) trying to get through your day living with these symptoms. Your doctor only sees you for that moment in the exam room while the ongoing reality can be much different. it might help to think of how you’d write scenes in a movie with you as the main character. What would this person look like during different parts of the day?

Caveat: give an accurate range of experiences and avoid describing only your worst or best day. Overstating symptoms can lead to too much treatment which sometimes can be worse than too little. You want to be heard, but don’t want to either minimize or inflate the problem.

Summarize your treatment goals. Dr. Terry Wahls, an internal medicine doctor with expertise in research and and her own personal journey with Progressive Multiple Sclerosis, recommends patients find a physical goal as their aim. (E.G.: I want to feel better, so I can: play with my kids or grandkids, travel to Italy or work in the garden, etc). It’s better to have a specific activity you’d like to do, rather than the vague, I’d like to have more energy. You’d like to have more energy or less pain in order to do what?

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For more detailed help getting started, here are some questions to consider:

SYMPTOMS. (For each symptom or group of symptoms), indicate:

1. When did the symptoms roughly start? (Month? Year?)
2. Was the symptom onset associated with anything(Injury? Chemical exposure? )
3. Where are the symptoms located and does this move?
4. How much do the symptoms interfere with your daily activities? You can also ask what tasks are you finding it hard to do because of the symptoms?
5. How much time or percentage of your day, are your symptoms in the Severe, Moderate or Mild Ranges? (Please clarify what “severe, moderate and mild” mean in your view. Mild could mean you can ignore the symptoms, moderate could mean it’s noticeable and delays tasks and severe could mean you are lying in bed or crying).
6. Is there anything makes the symptoms better or worse?
7. Is there anyone else in the family that experienced similar symptoms?
8. Have the symptoms changed over time and in what way(s). How quickly did they change?
9. How do your symptoms feel in your body? Put down anything you’ve noticed, even if the descriptions sound odd to you.
10. Any other observations.

TREATMENTS.

1. Over-the-Counter Medications. Try to be as accurate as possible when describing how many pills you use and how often. The words “as needed” can equally describe someone taking 2 Ibuprofen tablets once a month or 10 tablets daily. If you have intermittent flares, an individual might give their average use as taking 8 tablets a day for 3 days once a month, for example.
2. Supplements (how many pills, etc do you take and how often?)
3. Prescription Medications (including inhalers, refrigerated medications, nasal sprays, tinctures and topical agents like creams).
4. Medical Procedures and Surgeries
5. Physical and/or Occupational therapies
6. Complementary Treatments: EG: Acupuncture, Reiki, Massage.
7. Lifestyle changes: diet, sleep, relaxation, fitness, meaningful connections and work life).
8. Any other treatments

Here is wishing you a successful visit with your specialist where you feel your concerns and priorities are heard.

Dr. Valerie