Tag: Parkinson's

‘Shrooms

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Long ago, a relative sent me a link to a news article about “lion’s mane” mushrooms and their possible use in fighting Parkinson’s Disease (PD). The article made it sound like this particular type of mushroom may be quite helpful. I decided to add some lion’s mane to my diet. Unfortunately, I was never able to find any grocery outlets that carried this particular fungus, and any thought of it slipped to the back of my mind. Which is a scary place, but that’s not what this post is about.

A few weeks ago, I was reminded of lion’s mane mushrooms (though I forget what it was that reminded me). I did some fresh Googling and read a few articles. Many of these articles were extremely scientific (i.e., hard to read), so I’ll just point you to this one, which sums things up in a human-readable form. At this point, I’m feeling pretty good about lion’s mane, so I decided to see if I could find it in pill form, since my attempts at finding full-fledged fungus failed, folks. A quick Amazon search for “lion’s mane extract” turned up loads of options. I focused on dietary supplements, though I made a mental note that you can also order a kit to grow your own lions mane ‘shrooms.

One thing to note: According to at least one of the articles I read, you need to read the label to make sure you’re getting the correct part of the mushroom. Apparently, there are two main parts to a mushroom: the fruiting body and the mycelium. It seems the helpful stuff is found only in the mycelium. I saw quite a few products on Amazon that only mentioned fruiting bodies. In the end, I settled on a brand that says it contains both parts. It contains 7,500 mg “per serving”; the articles I read concluded that 1,000 to 1,500 mg per day is appropriate, but I want results NOW, DAMMIT!

Any way…I’ve been taking them for a week now. It seems like my anxiety and depression have been slightly reduced, but those symptoms vary so much that it’s hard to gauge anything by them. I’ll let you know if I experience any major changes in my PD symptoms. If I don’t notice any changes after a year, I’ll take stock of my condition and report back to you at that time.

Seeking Alarm Ideas

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Some time ago, I mentioned that I was using the Timer function on my phone to help me take my meds on time. Basically, I start the timer when I take my first dose in the morning, it sounds an alarm three hours later, and I respond by resetting the alarm and taking pills. This worked great for about 10 months. But yesterday, I forgot to set the timer when I took my morning pills. But I remembered when I needed to take my next dose, so I took it on time…and AGAIN forgot to start the timer! This time, I didn’t realize my mistake until I was feeling pretty ragged. And so, I finally set the timer…but this time, I forgot to take the damn pills! About half an hour later, I discovered this new mistake, then corrected it by taking the pills and resetting the timer. Three hours later, I got the alarm. So I reset the timer and AGAIN forgot to actually take the pills! Today at lunchtime, it was the same thing: I reset the timer without actually taking the meds!

So, I ask you, does anyone make an alarm clock that will slap me upside the head? Alternatively, have any of you had this problem, and found a good solution? I’m all ears (except for the rest of my body).

NEW Helpful Tool!

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Long ago, I realized it would be a good idea to take an inventory of my meds about a week before each trip I take, to ensure I’ll have enough to last me through the trip. For a long time, I did all the math in my head. But the number of prescriptions keeps growing, and so does the number of places where I keep them. So, before my last trip (Vermont), I decided to build a spreadsheet to help me with this task. It occurred to me that I’m surely not the first person to do this, but I’m also surely not the last. So, in hopes that some o’ y’all may get some use out of this, I am making my creation freely available to download. Here’s a quick preview of the beast, which I call MedSpred:

Start by typing the names of all your medications and/or dietary supplements into the “Drug” column under the red section. If you need to add more lines for more meds, you should be able to add lines normally. The formulas should be entered automatically, so your new row should have zeroes in columns C, H, and I. Now, in Column B under the Red “Demand” section, enter the number of pills you take per day, for each medication / supplement.

Next go to Row 5, directly under the green bar, and enter a short name or description for each place where you keep a stash of meds. For example, I keep the bulk of my daytime meds in the kitchen, the bulk of my bedtime meds in my bedroom, a day or so worth of meds in a fanny pack I keep just inside my front door, and a two-day supply in my Aware In Care kit (which lives in the trunk of my car). If your meds are strewn across more than four locations, you may add more columns (again, the formulas should be updated automatically), but you should seriously consider consolidating.

Now the math fun begins! In the yellow cell (C2), enter the total of number days you need to have covered – including the days between now and your trip (e.g., if you will be leaving 7 days from now, on a 7-day trip, you would enter 14). Lo and/or behold, column C now shows how many total pills you will need for each medicine and/or supplement! Go now, if you will, to each of your med stashes. Enter the number of pills of each medicine at each cache. Unless you only have unopened bottles, this will require actual counting.

Once you have entered all of your information as described above, look at the purple-headed “Result” column. A negative number means you don’t have enough of that drug /supplement to last the whole trip. Contact your pharmacy / doctor immediately to make sure you can get the amount you need before you have to leave. If you get a result that’s at or near zero, you might want to contact your pharmacy / doctor while you’re away, to make sure your meds are waiting for you as soon as you get back.

In case it helps, here’s an example, showing my completed MedSpred for my last trip:

If you’ve gotten this far and think you want to give MedSpred a try, click here to see the available files.

Self-Medication, continued

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A week ago, I slightly increased my Pramipexole dosage, in the hope it would address the off periods I have been experiencing lately. While there has been some improvement, I’m still not where I want to be. The anxiety and depression have been reduced over the last week, but the physical exhaustion is still as bad as ever. Worse, a fresh dose of levodopa no longer reliably vanquishes the exhaustion. So my guess is that the new levodopa pump wouldn’t help me. It may be time to add yet another different drug to my daily routine. Or maybe I should stop carrying all this Kryptonite around with me.

Parkinson’s Pump? Pish-Posh!

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Several weeks ago, I mentioned the possibility of my getting a Levodopa pump system “installed” on my person. I have since decided against the pump, despite the fact I never looked at the additional information I had requested. For me, it comes down to two things:

  1. Travel. Getting through the security screenings at airports is enough of a struggle as it is. I don’t want to add the complexities of explaining the electronic device that I’m hiding under my clothing.
  2. Infection. I know my hygiene habits. So, I know running a tube from my duodenum to the outside world absolutely will lead to perpetual infection.

But, as I said in the previous pump post, something has to change. And now I think I know what that is. The reason I feel like something must be changed is not because of the physical fatigue I’ve been experiencing, or any of the motor symptoms. It’s because of the anxiety and depression that come with most of my Off Periods. When this has been the case in the past, it has been successfully countered by slightly increasing my Pramipexole dosage. So, I’m increasing it from 11 pills a day to 12. After a week or so, I’ll take stock of my situation and go from there.

As for the pump, it’s still a possibility down the road. But it’s not happening until I’m so far gone that someone else is in charge of my hygiene.

Parkinson’s Pump

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There is now a “pump” available for Parkinson’s Disease (PD) patients. I’m supposed to be getting more info from my PD specialist soon, but here’s what I know so far. In an out-patient procedure, a tube is surgically implanted, allowing the “dope” to be delivered directly into your intestines. The pump, which is worn externally, continuously feeds the dope into your intestines. So, it sounds like you’re getting the same medication, it’s just that you’re getting a steady stream of it. Thus, it eliminates the ups and downs (i.e., the Off Periods) that many of us contend with every day.

I really don’t like the idea of having anything surgically implanted in me, but I have to change something. I got back from my latest trip almost two weeks ago. In that time, I’ve done almost nothing but lay on the couch all day, never feeling up to doing anything. Not even writing for this blog – and we can’t have that, now, can we? So, I’m thinking a tube may be in my future. I’ll keep ya posted.