[Jo S.]

Yup, totally. If I didn’t have my phone alarm, I’d be lost in terms of remembering when to take my meds. I always carry them (and my phone) with me, and I always make sure I have plenty of water when I leave the house. I definitely feel that my life — and esp. my meals — center around my meds.

[Jo S.]

Jean, that made me laugh out loud.

Shirley, it usually takes about an hour for my meds to kick in, and they wear off about an hour before the next one is due. It’s very frustrating for me, so I can appreciate what your husband goes through. I looked into medical cannabis mainly for this reason — I need something to help me get from one dose to the next. Sometimes (well, most of the time) I feel as though I’m glued together by pills.

[Jo S.]

I generally say that I’m doing well, especially if it’s someone I’m not close to or who doesn’t know I have PD. I haven’t told a lot of people, but with those I’ve told, I might say, “I’m doing okay,” or “So so,” or something along those lines if I’m not feeling particularly well right then. I guess it all depends on the person and the circumstances.

[Jo S.]

I definitely want a partner when it comes to my health care. I don’t like it at all when a doctor thinks I don’t know anything or haven’t done any research. I’ve found that many times I’m more informed and knowledgeable on certain approaches than my doctor!

[Jo S.]

I’m glad they are mostly supplements (that many pharmaceutical drugs would be overwhelming!), Shirley. I was only recently diagnosed (earlier this year), but I’ve had symptoms for 15-20 years (possibly longer).

[Jo S.]

That’s great, John. Thank you!

[Jo S.]

Hi, Jean. My potassium levels are fine (I’ve been vegan for over 40 years, so I gets tons of potassium in my diet). I also drink water constantly. These are PD symptoms — not symptoms from mineral or hydration deficiencies. Cramping and spasms go along with rigidity and dystonia and RLS. Not fun.

[Jo S.]

That’s a lot of pills, Shirley! How long has he been on that many? Is he experiencing side effects?

[Jo S.]

That’s true. Although my doc said I shouldn’t notice any difference between Merck Sinemet and the generic C/L, I’ve read reports from a number of people to the contrary.

[Jo S.]

I exercise, but the meds also help with with symptoms that exercise doesn’t reach (such as tremors). Sadly, neither help with my cramps and muscle spasms.

[Jo S.]

Yep, quality control among products that are classed as supplements is virtually nonexistent. I think that’s one of the biggest challenges/problems with trying to go a more natural route. And for products not made in the US (and even some that are), it’s often anyone’s guess what’s in them.

[Jo S.]

LOL!!!

[Jo S.]

Thank you, Jean!

[Jo S.]

WOW! You really ARE lucky! I wish there was something like that near me as well.

[Jo S.]

I guess it would depend on what symptoms you hope the medical cannabis will help and how well the PD meds are helping you manage them. I really wish there was a natural solution (better yet, a cure!) and we didn’t have to take pharmaceuticals. I think that’s really all that MDS and neurologists can do for us (prescribe more drugs, that is). 🙁

[Jo S.]

Thanks, Jean. I appreciate the link, and I’m sorry you’ve had so many challenges. I’m grateful to know you gave this a good try and it didn’t work (six months is a long time to adhere to something that was causing such severe side effects!), as that makes me a lot more skeptical of this as a possible solution. The nausea you experienced makes sense, given everything I’ve read about this. I suffered horrible nausea when I started on Sinemet, so I certainly don’t want to go through that again with anything else. I guess we’re all seeking the best, least expensive, and most natural “cure” or treatment, but there just may not be one.

[Jo S.]

I couldn’t agree with you more, Jean. (And thank goodness you were able to save your thyroid!)

[Jo S.]

You are very fortunate in that regard, Jean! So you’re not taking any meds now at all?

[Jo S.]

Thanks, Jean!

[Jo S.]

Absolutely! My husband is retiring very soon (I’m still working full time), so I don’t know if we’ll be able to continue to afford it, but it definitely aids relaxation, which is something I most certainly need.

[Jo S.]

I saw that, Jean — thanks. I don’t want to be the one to start a group (that’s not my thing), and I don’t know anyone who would be willing to take this on. I’d like to participate in the group as a singer, I just don’t want to start it. 🙂

[Jo S.]

Hi, Jean,

The pharmacist at my dispensary spent a lot of time with me. They know they need to educate their “customers,” especially those for whom it’s their first time visiting a dispensary. I think they’re as knowledgeable as possible, given the number of ailments they cover and the number of products they sell. They want to sell something that will work for the customer/patient, because they want repeat business. 🙂

Just be aware that it will take some trial and error to find the right product and the right dose in the right delivery system. And it’s expensive, so be prepared for that as well.

Lower THC is better for PWP, so you shouldn’t get high at all. I didn’t get high with vaping, even with the high THC product. Vaping is supposed to work quickly but doesn’t last that long, whereas the sublingual oils work in about 15-30 minutes (if you can keep the oil under your tongue for 1 full minute); if you swallow the oil, it won’t have any effect for an hour or two because it will be going to your stomach rather than into your bloodstream, and whatever is in the stomach (especially if you’ve eaten fatty foods) will slow down its absorption. The oil lasts much longer, though (about 6-8 hours).

This isn’t your high school marijuana, so don’t worry about getting giddy or having the munchies (although some people have reported that it does improve their appetite, especially if they had a diminished appetite previously).

[Jo S.]

That’s absolutely true, Jean! If I didn’t have to see the doctor again and could just go to the PA, I’d be a very happy patient. 🙂

[Jo S.]

Hahaha! Good one, Lou! I get the “but you look great” response quite a lot. It’s a bit flustering, as I know people are trying to be complimentary, and yet it totally discounts how I actually feel (and diminishes the far-reaching effects and challenges of this disease).