[Jo S.]

Oh, gosh, I would hate to be diagnosed with PD via telemedicine. I could see using that occasionally for consults between office visits, but not for regular evaluation and treatment. Speaking of the “human touch,” I’ve found that my neurologists are very hands-off, whereas an actual touch (a hand on the shoulder, for instance) would be so welcome and would help to make that connection between doctor and patient stronger.

[Jo S.]

I haven’t heard of her, but the conference sounds really interesting. Are you going? If so, please share what you learn afterward!

[Jo S.]

I get massage therapy three to four times a month. My massage therapist is wonderful (and comparatively inexpensive), and I’d love to go more often if I could afford it. She doesn’t fully understand rigidity, so she’s often giving me advice that would be more appropriate for a “normal” (non-PD) person. Insurance in my state rarely covers massage therapy, and mine doesn’t at all. It partially covers speech therapy, OT, and PT, but not massage therapy. In terms of massage helping rigidity, it does … a little … but it’s not long-lasting. It would probably help more if I could go every day. 🙂 Unfortunately, it doesn’t help with muscle cramping or spasms. That said, it feels really good and is soooo relaxing, and that alone is worth it.

[Jo S.]

I would love, love, love to go to something like this in my area. I joined a Circlesinging group here, but it’s not for people with PD, so I’m struggling sometimes to fit in (my voice cracks and goes off-key, so it’s a bit embarrassing). I’m not someone who would start something like this locally, but I’d be a participant. Is there a way to get someone (else) to start a group like this for us in our individual areas?

[Jo S.]

I agree with everything that’s been said so far. I really didn’t want to take pharmaceuticals, but there’s really not much else available. I talked with my first doctor about it, as I knew nothing at all about medical cannabis and he really didn’t either. He said the same thing you’ll hear and read everywhere: There have been no solid clinical, peer-reviewed studies and everyone’s brain is different and responds differently to medical marijuana (MM). That’s why it would be virtually impossible for your neurologist to prescribe anything. Doctors know very little about how MM works, and there are literally thousands of MM options, and they vary from state to state. There aren’t any standardized forms as there are with pharmaceuticals.

That said, I got my card and went to my dispensary. I’ve gotten quite an education since then. I tried vaping MM, which is supposed to provide more of an instant relief. I kind of enjoyed the experience of vaping, and it seemed to provide a bit of a calming effect for me, but I have since developed a very dry mouth and throat (not from the vaping, but probably from my meds or PD in general), so vaping isn’t a good solution for me. I also tried the sublingual oils, and those didn’t have much of an effect at all, but that might have been due to their strength, the low dosage I was taking, and a bit of general fear I had of them. I had a high CBD/low THC oil for the daytime and a high THC one for nighttime. The daytime one kind of “took the edge off” between my pills (which is what I was hoping it would do), but the nighttime one just made my mind race (and I need something to help with insomnia, fragmented sleep, and restless legs, so that didn’t help at all).

I tried the daytime one until I ran out of it, and I recently returned to the dispensary. I’m now trying two other options (an oil for day — 1:19 THC to CBD and another oil for night (1:1 THC to CBD). They are VERY pricey (actually all the MM products are expensive!), but I think these will work much better for me. I’m mainly using them as an adjunct to my regular PD meds, as I need something to help during “off” periods. However, if they helped so well that I could give up the pharmaceuticals, I’d do so in a heartbeat. Occasionally there’s a story about someone along those lines, but I think the people who get that kind of benefit from MM are few and far between.

What they’ve mostly helped with is calming me down and relaxing me so I’m not quite as restless and my tremor isn’t quite as active. Their effects are very subtle — nothing drastic (at least not for me). I’m going to continue with them to see if the more I use them the more effective they will be. Note that dosage is highly individual (another reason a neurologist can’t prescribe a product or dosage). I suggest going to your dispensary and talking with the pharmacist there. They will be able to educate you about the various products available, how to use them, what might be best for you based on your symptoms, and what dosage to start with and how to tritrate up.

More research is being done in this area, but much more is needed. Until there is a cure (and I’m optimistic there may be one in a few years — I’m the same age as you are, Jean!), the MM may be the best option for helping us get through this without adding more and more and more drugs to our regimens.

[Jo S.]

I use the messaging system that my insurer provides (as all my docs are in that system). I mainly communicate with the PA, as she’s very responsive (and I really like her). The upside is that there is a record of our communications (on both sides), so either of us can refer to what we discussed. The downside is that sometimes she doesn’t read my full message (even though I try to keep things very clear and concise) or misses something I said that’s important in terms of fully understanding my request or concerns. I suppose that could happen in face-to-face or phone communications too, but at least then you can immediately clarify things.

My doctor gave me her email address, but I haven’t reached out to her that way yet. I’ve only seen her one time (I saw another doc initially, and I’ve seen the PA at least three times and have communicated with her quite a bit). The doctor was a bit cold, so I’m hesitant to contact her directly between appointments. The phone doesn’t work well for the practice I’m in. All the docs are also researchers, so they only see patients part-time and are very difficult to reach by phone. That’s fine by me — I prefer online written communications anyway.

[Jo S.]

I was diagnosed in February 2019, and saw the PA three months after that. I was scheduled to see the doctor three months after seeing the PA, but I decided to switch doctors (within the same practice). After I saw her, she scheduled me to see the PA four months later, and then scheduled me to see her (the doctor) four months after that. So for now, I’m seeing either the PA or the doctor every four months.

I’m much more comfortable with the PA than the doctor (I love my PA), and I can message her through my insurer’s online app. The doctor provided her email address, but I haven’t used that method yet to communicate with her between appointments. I’d much rather communicate with the PA via the online app.

[Jo S.]

I agree, Jean. They also tend to be more approachable and empathic. Honestly, if I could just see the PA, I’d be overjoyed. 🙂