Last week in this space, I talked about my experiences with Parkinson’s and anxiety. I have often heard that anxiety and depression are both parts of a single spectrum. Two turds in the same toilet, as I believe the French say. Since the two are … Continue reading Parkinson’s Symptoms: Depression
Welcome to the first official installment of Thymptom Thurthday (which may and/or may not be sponsored by Sylvester the cat). Under the ostriches auspices of Thymptom Thurthday, I will detail my own experiences with the many symptoms and side effects of Parkinson’s Disease (PD), covering … Continue reading Parkinson’s Symptoms: Anxiety
One year ago, I started taking lion’s mane mushrooms in capsule form. This is merely a dietary supplement, so there’s no need for a prescription, and I expected it could take weeks or even months to see any results. Thus, I told you at the time that I would report back with any results after a year. And so, here we are. And I have indeed noticed significant improvements in some areas. These are those:
Better Sleep:
Prior to starting the lion’s mane regimen, I would often wake up multiple times during the night. Sometimes I could get back to sleep, sometimes not. In any case, I almost always got out of bed between 4:00 and 7:00. After about five months on lion’s mane, I began experiencing solid sleep. Once in a while, my dog wakes me up, or I’ll get up to urinate, but I almost always get back to sleep quickly. And I’m sleeping until somewhere between 7:00 and 9:00 (some days, even later).
Awakening Alive:
Before the shrooms, when I got up in the morning, I would take the day’s first dose of Levodopa (Levo) then just crash on the couch for half an hour (which is about how long it takes for the Levo to kick in). Until the Levo took effect, I usually felt incapable of doing ANYthing. Since about five months after starting lion’s mane, I have generally felt capable of doing things the instant I get out of bed. Once in a while, I even forget to take the day’s first dose of Levo!
Off Periods Reduced:
I take Levo every 3 waking hours. Prior to shroomin’ it up, I could always feel when time was approaching for the next dose. About 2.5 hours after taking a dose of Levo, I would start having anxiety, or sometimes depression. Since about five months after starting lion’s mane, the anxiety / depression have been noticeably less prevalent, and the Levo doses don’t tend to start wearing off until just a few minutes before my next dose is due. I’ve even been seriously late (up to nearly two hours late) taking a dose, and STILL didn’t have any anxiety / depression (though I did feel the ol’ physical fatigue on those occasions).
No RLS:
Before lion’s mane, I tended to experience Restless Leg Syndrome (RLS) one or two nights per week. (In my case, it manifests in the upper body, so I call it Restless Arm Syndrome.) Over the past month, I have only experienced RLS / RAS once. And that one time may not even have been RAS, as I was laying on the couch in a goofy position. And I’ve also been taking nicotine supplements during that time, so it’s conceivable that nicotine is what fixed the problem.
Reduced Medication:
I might expect improvements such as those described above if I had added a new medication or increased the dosage of one I’m already on. But there have been no such additions / increases. In fact, around the time I started noticing these improvements, I actually decreased one of my meds. I get Pramipexole (Prami) in tiny 0.125 mg pills. I had been taking eleven of these each day for the last few years, but reduced it to nine each day. (Since then, I tried reducing it to eight, but that led to a significant increase in anxiety.)
In conclusion, I highly recommend all you Parkinson’s sufferers out there try taking a lion’s mane mushroom supplement for at least a few months. But make sure you read those labels first to make sure you’re getting the correct part of the mushroom. Y’see, there are two main parts to a mushroom: the fruiting body and the mycelium. According to the articles I read, 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 seems like every time I read a news article about Parkinson’s Disease (PD), somewhere in the article they mention there’s no cure for PD. If you ask any neurologist, they’ll say the same. There are treatments that may slow the progression of PD but nothing that will fully halt, much less reverse, the worsening of the disease. But I’m starting to wonder…
A friend recently informed me that a PD sufferer at his church had been taking a product called Restore Gold (TM) and reported that his tremors had stopped about two months after he started taking it. I have not yet researched this product, but a quick web search found some people claiming it had worked well against their PD, and others claiming it was a flat-out scam.
A couple weeks later, another friend sent me this link. This video asserts nicotine (yes, THAT nicotine) is in reality neither addictive nor harmful, and that it is an excellent fighter against PD and many other maladies. To be clear, the video is NOT pro-tobacco. Indeed, it blames the tobacco industry for falsely claiming nicotine is addictive, while they were secretly adding the truly addictive chemicals that are found in cigarettes. Ultimately, the video attempts to steer the user towards the nicotine patch (specifically the Rugby(R) brand of nicotine patch) as a way to reverse PD. I have not yet fully researched the use of nicotine in the fight against PD, but a quick web search found what appear to be several legitimate studies supporting this claim, including this study funded by the Michael J. Fox Foundation.
I am tempted to add both Restore Gold and nicotine patches to my daily medication / supplement regimen. However, adding multiple approaches at once would make it difficult to know which one is doing what, assuming I actually do see some changes. And I am already seeing some changes. Changes that I can only attribute to ‘shrooms. And I don’t mean “Magic Mushrooms”, though there are studies underway trying to determine whether psilocybin has any effect on PD.
No, my friends, I’m typing about “lion’s mane” mushrooms. As you may and/or mayn’t recall, this friendly fungus was featured five months ago. For a few months, I seemed to be getting some positive results, but it was kinda hard to tell. Over the last month, I have definitely seen improvements in the following:
Better Sleep:
Prior to starting the lion’s mane regimen, I would often wake up multiple times during the night. Sometimes I could get back to sleep, sometimes not. In any case, I almost always got out of bed between 4:00 and 7:00. Over the last month, I have been experiencing solid sleep. Once in a while, my dog will wake me up, or I’ll get up to urinate, but I almost always get back to sleep quickly. And I’m sleeping until somewhere between 7:00 and 9:00 (some days, even later).
Awakening Alive:
Before the shrooms, whenever I got up in the morning, I would take my first dose of Levodopa (Levo) then just crash on the couch for half an hour (which is about how long it takes for the Levo to kick in). Until the Levo took effect, I felt incapable of doing ANYthing. Over the last month, I have usually felt capable of doing things the instant I get out of bed. On a couple of occasions, I even forgot to take my first dose of Levo!
Off Periods Improved:
I take Levo every 3 hours (except overnight). Prior to shroomin’ it up, I could always feel when time was approaching for the next dose. About 2.5 hours after taking a dose of Levo, I would start having anxiety, or sometimes depression. Over the last month, I have hardly experienced anxiety or depression at all. I’ve even been seriously late (up to nearly two hours late) taking a dose, and STILL didn’t have any anxiety / depression (though I did feel the ol’ physical fatigue on those occasions).
Reduced Medication:
Now, I would expect improvements such as those described above if I had added a new medication or increased the dosage of one I’m already on. But there have been no such additions / increases. In fact, a little more than a month ago, I actually decreased one of my meds. I get Pramipexole (Prami) in tiny 0.125 mg pills. I had been taking eleven of these each day for the last few years, but reduced it to nine each day. With the encouragement of my medical provider, I reduced it even further last week, to eight each day. So far, that’s working well.
One final note:
The news articles that led me to start taking lion’s mane supplement concluded that 1,000 to 1,500 mg per day was the appropriate dosage. But the brand of supplement I settled on comes in 7,500 mg capsules – and they recommend taking two of these each day. So far, I have only taken one of these each day because for crap’s sake, that’s already 5 times the amount recommended by studies. But I am ever pondering as to whether I should try bumping at up to two-a-days. If I do, I’ll let you know in a new post.
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.
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:
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.
I’ve briefly mentioned Restless Leg Syndrome (RLS) in this blog, but haven’t addressed it head-on., so let’s do that, shall we? I have only had three nights of true RLS, which were a result of trying to quit Pramipexole cold turkey. Those three nights kicked off The Worst Two Weeks of My Life. For more on those two weeks, see The Disease. I’ll just say this much for now: thanks to RLS, I now understand the concept of “sleep deprivation torture”. Every single time I was JUST on the verge of falling asleep, my legs would tense up, and I would feel that I HAD to move them around. This happened probably a dozen times each of those three nights.
Since getting myself back on a stable dosage of “prami” I have not experienced true RLS. I say “true” here because I periodically experience what I describe as Restless Arm Syndrome. The sensation is exactly the same as RLS, except it occurs in my arms and/or pectoral muscles. It only happens about once a month, but when it does happen, I just get out of bed. I am not about to put myself through the aforementioned sleep deprivation torture. Sometimes I’ll take an impromptu dose of Carbidopa/Levodopa. That helps sometimes, but not always. Whether I take the extra dose or not, the Restless Leg/Arm Syndrome ceases with the sunrise. Therefore, I think RLS is a vampire.
While Levodopa is the “gold standard” drug for treating Parkinson’s Disease (PD), it also has a reputation for causing dyskinesia in patients who have been using it for several years. For this reason, many people (both patients and doctors) tend to delay Levodopa therapy as long as possible, using other drugs for the first few years after diagnosis. In my case, that other drug was Pramipexole (generic Mirapex).
I started taking Pramipexole (which I have nicknamed Prami) immediately after being diagnosed with PD. That would mean I started taking it in early 2015. The timing was interesting, as I had already planned a casino trip for the following weekend, and the doctor warned me that Prami sometimes causes impulsive behaviors – specifically in regard to gambling. When I arrived at the casino, I very quickly lost my life savings, my house, my dog, my sense of wonder, and all the hubcaps I managed to steal off cars in the casino parking lot. Not really. I gambled and lost a small amount of money – only the amount I had budgeted to lose. But not all was well. I was experiencing an anxiety that felt different from any anxiety I had previously experienced – definitely drug-induced. I called my doctor’s office to let them know about this awful side effect. (I didn’t mention to them that I was calling from a casino.) They advised that I should cut my daily dose in half for about a week, then return to the “full dose” – in other words, I needed to ease myself onto the stuff.
So ease I did. Once I had stabilized on the prescribed dosage (which took a couple weeks), Prami and I got along just fine…except for the incident where Prami decided to scare the crap outta me. Here’s how that joyousness went down: I was driving my car, in fairly heavy traffic, so not moving fast at all. Suddenly I felt kind of a numbness in the middle of my spine, and I COULD NOT MOVE. Fortunately, this was an instantaneous event, lasting no more than a second. Now I imagine that momentarily feeling paralyzed would be unsettling in just about any situation, but when it occurs while driving, well that’s just plain scary. This actually happened twice during my first year of Pramipexole use. It has now been at least five years since the second such incident; I’ve been on Prami that whole time, and nothing remotely like these two incidents has happened since.
I have more to say about my ongoing experiences with Prami, but I will leave that for a future post.
Voyages with Parkinson's 