Finding a Neurologist - third time's the charm?

Living in a large metropolitan city with all-you-could-ever-ask-for-and-then-some medical services is privilege. It doesn’t necessarily mean you can take advantage of those services, even if you want to or need to, but they are there. Living outside a large metropolitan city often means you take what you can get.

There is one movement disorder clinic in all of Western Massachusetts and they aren’t connected with my chosen health plan. So…. finding a neurologist I would be comfortable with has been an adventure.

1st doc - was a headache specialist. He had obviously looked up information about Parkinson’s before I came in, because when I complained about fatigue, he said fatigue was not a symptom of Parkinson’s and (shuffling through his papers and glancing at his computer screen), if it was a major symptom, he would have written it down. I lasted two visits. On the second one, he smiled sweetly at me and, having dictated into his computer (my medical record) the words “mild symptoms”, he let me know that “as we get older, we don’t have as much energy as we used to”. I fired him.

2nd doc - the one I will name - Dr. Armand Alliotta told me right off he wasn’t a movement disorder specialist, but if we got stuck and needed more help, he could send me to Boston. Dr. Alliotta listened, he chatted, he put me at ease. I was thrilled to find him and didn’t care if he wasn’t a Parkinson’s specialist! He treated me as a person, a fellow adult person, and made it clear we would be working together. Instead of being patronizing, he shook my hand. It was like being welcomed as a peer. Then he retired.

At my last visit to Dr. Aliotta, he referred me to the movement disorder doc in Springfield. I guessed that since I’d been through two neurologists already, going outside the regular referral zone must be permitted. After all, he’d been ready to send me to Boston!

3rd doc - movement disorder clinic - This clinic reminded me, in some ways, of the large clinic at Anschutz in Denver. It was busy, people were moving quickly, and everything seemed ultra professional. I saw the nurse practitioner. I often prefer the nurse practitioners because they seem to have more time to spend with patients. Talking with her, answering her questions, I was very aware this was definitely a place that understands Parkinson’s disease and dystonia. At some point, she brought the doctor in and introduced me to her. The doctor seemed quite aloof, but then, I don’t know her at all yet.

I thought things went well, but there was one hiccup. A few days later, I went to pick up a prescription (not related to PD) and the pharmacy advised me i had three more prescriptions ready to pick up. Huh? Seems the nurse practioner and doctor decided to prescribe some meds and sort of forgot to talk to me about it. I went home in a huff and put in a call. To her credit, the NP listened and listened.

The essence of what I told her (and some of what I wanted to tell her) is this:

I do not expect you to solve all my health issues and eliminate all my symptoms. I do not expect you to take away all my pain. When I tell you what my symptoms are, it is for your knowledge.

If there are symptoms I want to have addressed, I will let you know. Then it is your job to let me know what the options are for treatment, including no treatment. I also expect you to honestly let me know what the effects of medications can be, whether they are intended effects or the non-marketable kind.

When I come in to the office, my speech may slur sometimes. I may not be terribly coordinated. I may need to ask you to repeat what you say, especially as we wear masks. I may ask questions that seem obvious to you. However, as this is a movement disorder clinic, I would expect you to understand that these symptoms do not give you any indication of my intelligence. Make sure you treat me in accordance with this understanding.

I’m a new patient to you, but I was diagnosed 14 years ago. I am not new on this journey.

Medications are always a concern for me. My system is ultra sensitive to drugs. Believe me. Please! If I say I cannot take a certain drug, do not assume I was overusing it and prescribe it anyway. If I say I cannot take it, I WILL NOT take it. When I ask about possible effects of a drug, do not brush off this concern. Yes, I know there is only a small chance of some of these severe reactions, but when they happen, it’s not just a small part of me that’s affected. It’s all of me. If I’m not willing to risk being one of the 5 % of people who have a reaction, support my decision.

You are the expert in regards to the scientific stuff.

I am the expert in regards to my own being - physical, mental, emotional, spiritual. I am also part of a family. I am the one who understands that my needs have to be balanced with the needs of my family. I will not use a medication that could interfere with my ability to drive a car.

Thank you for listening. Thank you for apologizing about the medications. I really do not want to look for another neurologist and start yet again.

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And yes, I am still privileged. I live in an area where there’s a neurologist - more than one, in fact. There are a lot of rural areas where there aren’t any specialists close by. I am grateful I had amazing neurologists in Denver who knew to work with me. My other choice here would be to find a doctor in Boston to see once or twice a year, then have my PCP follow up in the family medicine clinic. That would be okay, too. For now, I’m confident I was able to communicate my concerns and needs with the nurse practitioner.

It’s a work in progress.