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When Sasha Shulgin was at the end of his life, experiencing dementia, I had the privilege of interviewing him. Then both my parents got dementia. These experiences taught me lessons in life I won't forget, and I want to share them with you. [Reagent test kits and fentanyl test strips available at Grassroots Harm Reduction] ROUGH TRANSCRIPT Hi everyone. I really hate that I have to begin my show again, for the third time in a row, with an apology for how long it's taking me to produce new episodes. But I've really been 2020'd hard. Since the last episode I've had three people in my life die. My best friend from high school, Pat Welch, died in a motorcycle accident, my good friend and colleague, Kevin Zeese, who founded of the Drug Policy Foundation and served on the board of DanceSafe for a while, died of a heart attack, and just week ago my step father died of covid. And… my mom also has covid, and she's been in the hospital for the past two weeks. And for some unknown reason… it might be the covid… right around the same time she got it, she lost virtually all of short term memory, and she can't care for herself. So for the past two weeks I've been on the phone with doctors, nurses, lawyers, and her friends in England… to try to manage her care. And I've been talking to her every day. And it's tragic, because when you lose your short term memory you can't grieve. Her husband died a week ago but she keeps asking her nurses, "where's Jim?" And she has to re-learn over and over again multiple times a day that he died. It's like she's being continually re-traumatized. You need to be able to encode new memories or you can't grieve. I can't think of anything worse, and it's really affecting me. My mom has always been a smart, super competent, and highly motivated woman who took care of everyone around her, and now she's in this horrible twilight zone hell of non-stop misery and I feel helpless to do anything about it. The nurses aren't allowed to tell me what medications she's taking. She can't remember obviously. All she does is cry and say, "what am I gonna do. I can't live without him." It's just awful. And because of the covid, it's even worse. She's not allowed visitors. She's just alone in a hospital bed crying and confused. Even the doctors who might be capable of assessing her short-term memory issues aren't allowed to see her. I'm not allowed to fly over there. Even if I did I couldn't see her now. I'd have to quarantine for two weeks first. So I feel helpless. FUCK YOU 2020! YOU FUCKING SUCK! [MUSIC] Hi again everyone. So I recorded that about a week ago. I don't know what I was thinking, how I would possible have been able to record an entire show in the state I was in back then. I t may have been because I started taking Adderall every day. I convinced myself it would help me manage my mother's situation, and maybe it did, but I think it really just added to my overall stress. And maybe minor mania too. There was no way I record an episode in that state. No way in hell. Why would I even want to? I think I felt guilty that yet again a month was ticking by with no new episodes, and I do feel a commitment to you all. My listeners. But anyway, I think I can do it now, and I'll tell you why. First, my mother's getting better. She finally tested negative for covid, and the past three days her memory is much better. Maybe it WAS the covid affecting her brain, but it also could have been this one medication she was taking. After fighting with her nurses for a week I finally got a list of her medications, and she'd been on this Parkinson's drug called Pramipexole. She doesn't have Parkinson's, but Pramipexole is sometimes prescribed for restless leg syndrome, this condition where your leg twitches when you try to fall asleep. Anyway, as I was googling her medications, all these warnings popped up around Pramipexole about, I fucking kid you not, SEVERE SHORT TERM MEMORY IMPAIRMENT! Are you kidding me? A twelve-year old could have discovered this about this drug, yet the nurses who were witnessing her memory problems on a daily basis were giving it to her every night. So I fucking called them right away and told them to stop giving her that drug, and they told me they couldn't without talking to her GP. In England a GP, or general practitioner, is like a primary care physician in the States. I said, "what about a doctor there" and they said the covid ward doctors couldn't make a decision about anything other than covid treatment. Jesus fuck! So then I realized I had to talk to her GP, but for the past month her friends in England had been trying to get a hold of her GP and they would never call back. My sister tried also about a week ago… specifically to try to get a list of her medications, and they wouldn't even put my sister (HER DAUGHTER) through. Everyone had been telling them that my mom had this sudden dementia and she needed to be assessed. I don't know if it was the covid or bureaucracy or whatever, but her GP wouldn't talk to anyone. So I called and told the receptionist that I was a doctor in America, and my mother was likely suffering memory impairment from a certain medication she was on, and that we had been trying to get a hold of her doctor for a month, and the situation was critical now, and I want to the doctor to immediately call the hospital and have them discontinue this medication. "Right away Dr. Sferios. Let me put you through to her doctor." Same conversation with her doctor, with an added, "didn't you know Pramipexole has a common side effect of severe short term memory loss? And… why is it in England it takes a month to get through to a GP?" Well, he called and had this Parkinson's drug discontinued right away. And the next day, my mom seemed a little bit better. Yesterday too, and today… I just got off the phone with her, and she's back. I fucking have my mother back. Now, it's too early to know whether it will last. Maybe it was the covid. Maybe it was the medication, or maybe even she's just having a good spell, which can happen with dementia. But either way, Pramipexole is contraindicated with dementia. You just don't prescribe someone that drug if they are experiencing dementia, especially for an off-label use like restless leg syndrome. I stopped taking the adderall, by the way. Can't fucking do stimulants eery day. My blood pressure was high. It wasn't good for me. Drugs. This is a podcast about drugs. But look, if you've been following me, you know I don't compartmentalize my life. I talk about everything. So this is my personal life. But I'm telling you, as I always do, because it's who I am. Full honesty. Full authenticity. And I wanted you to know why, once again, I wasn't putting out regular episodes. But there are some drug lessons here, aren't there. Other than watch out for adderall and high blood pressure, particular when you hit middle age… there's also something obvious here, but I guess not obvious enough for my mom… who's a hello a smart woman. And that is… don't ever let a doctor prescribe a drug for you without researching it first yourself. You can't trust doctors to know everything about every drug they prescribe. New drugs are released constantly and they get pens and paperweights sent to them by the pharmaceuticals with the new drug's name on them in order to convince the doctor to prescribe it… FOR MONEY! If you wouldn't take a new research chemical without researching it, why would you take a pharmaceutical EVERY DAY OF YOUR LIFE, without researching it? And I get it. Some people want to trust their doctors. They don't trust themselves to know what the truth is. But even if you are't the brightest egg, at least google and read the top five links, and if you see side effects that bother you, like "SEVERE SHORT TERM MEMORY IMPAIRMENT," at least ask your doctor about it? Say, "hey doc I noticed this side effect of this drug you want me to take." And if you doctor says, "I'm not too worried about that" then ask, "why not?" And if you don't get an answer that makes sense, you need to do a risk-benefit analysis for yourself. Is a twitching leg at night worth losing all your short term memory? Is a night of cocaine fun worth dying because you didn't test it for fentanyl first? We're a drug happy culture, and I'm not against any drug, as I'm sure all of you know. But remember pushers have an interest in getting you on their drugs. This is capitalism. And to be honest, illicit drug makers are FAR MORE ETHICAL than the pharmaceuticals. The NBOMe's have kind of disappeared. So have some of the dangerous cathinones. When a recreational drug comes out and people start dying, we've seen a tendency for manufactures to stop selling them. The dark net these days is mostly filled with the good drugs. You used to be able to get anything. Now most of them have banned fentanyl, and the nBOMe's etc. Pharmaceuticals won't do that. They will lie about their studies. They will coverup the dangers, so with pharmaceuticals you need to be even more vigilant. The cartels of course are an exception when it comes to illegal drugs. They're more like the pharmaceuticals than they are small underground chemists. That's why fentanyl is more prevalent than ever. Despite the dark net markets refusing to allow them, and small-time chemists no longer making it, giant Chinese labs in cahoots with Mexican cartels are still flooding our drug supply with fentanyl. So test your fucking drugs for fentanyl. Get your testing strips at dancesafe.org. sigh… Memory… it's so fucking important. I remember when I saw Sasha Shulgin for the last time. I was interviewing him and and Ann for my documentary. This was a bout six weeks before Sasha died, and was struggling with dementia himself at the time. I asked him what it feels like from the inside to have memory issues like he was having. In true Sasha fashion, he rubbed his chin and thought for a moment, then looked up and said, "I can't remember" with a big smile. Sasha, the great lover of puns, couldn't resist the opportunity for a good joke. But here's the real thing, and trust me on this. I've been talking to my mom now, who's back remember, and I told her about everything that had happened over the past month, and she was kind of in disbelief. Yes mom Jim died almost two weeks ago. Yes mom you've been in the hospital over three weeks. This may sound trite but I'll tell you why it's not in a minute… WHEN YOU LOSE YOUR MEMORY, YOU CAN'T REMEMBER. You don't know it. When you lose your short term memory, you don't realize it. This is profound shit. You feel the same on the inside. You will be confused, but you have no clue it's because of memory. In the throngs of my mom's short term memory loss, she kept saying, "what am I going to do?" Over and over, and "I can't live without him." This is so unlike my mom. Her husband almost died of cancer ten years ago and when he was in the hospital having surgery with some chance oof death, my mom was calm and coherent. We talked about what she wanted to do when he died. Did she want to move back to the States and live with me? Would she want to live alone? She said she didn't want to move back. She had a young grandson she loved, Liam, her husband's grandson. Liam is now 13. She wanted to be near him. But when her short term memory was gone, she was just in a panic. And she didn't know why. She just knew on some intuitive level that she was confused… "I DON'T KNOW WHAT TO DO," she kept saying. That was true. But she didn't know why. When I would tell her it was her memory, she denied it. "Oh everyone is telling me the but my memory is fine." When you're in it you don't realize it. You won't be able to remember that you can't remember when you lose your memory. Short term or long term. And what does that mean for us? What's the lesson here? What's the difference between Sasha, who was his jolly old self even though his dementia at the time I last saw him was worse than my mom's, and my mom's who was emotionally hysterical … for weeks. Ok the obvious is that my mom had just lost her husband and was re-learning that over and over, whereas Sasha had his beloved Ann right nest to him the whole time. So you never know what situation you might find yourself in later in life. But still, I think there's a lesson here. That means something we can learn about this situation that gives us practical information. And so here's what I think it is… Both is if someone we love gets dementia. And if we get it. If someone you love gets dementia… what I learned, from my mother's hopefully brief situation, to my father who died in 2012 after a year-long fight with dementia… is that you need to meet them where they are at. You need to do your own grieving as quickly as possible, over the loss of whatever you were attached to in regards to your loved one, and you need to realize they are still there. On the inside, no matter what is going on on the outside, THEY—THEIR CONSCIOUSNESS—is still their. They still feel themselves exactly as they were. And you need to treat them with respect. For me, with my mom, that meant trying to make her happy and calm her. I didn't want to lie to her that Jim was still alive (although I have heard in some long-term cases when the short term memory doesn't come back, some families choose to lie, and that's ok. I just couldn't write off that she wouldn't get better, it was too early, and I'm glad I didn't.) So I kept telling her, "Don't worry mom. I'm here and you have tons of people who love you and we're going to help you through this. You don't need to do anything. We're taking care of the funereal, and you're going to see him and get to say goodbye very soon." A minute later… "what am I going to do?" "You don't need to do anything, mom. We're taking care of everything. You're going to see him soon at the funereal and say goodbye." For ten minutes it would go on like this. But it would calm her down. I hope you never have to deal with this. But a lot of us will, as dementia affects more and more people. Like I said, I went through it with my father, and now my mother, and while I hope it was just the covid, or the medication that caused it, I don't know. And the fact that BOTH my parents might have some predisposition towards dementia, I've been doing a lot of thinking about what I can do NOW, so that if I get it, I'll be more like Sasha. And I do think there's a lesson here. Maybe just a small one, because there's a lot of unknowns, and of course factors we have no control over. But in general I think the lesson is to deal with your demons now, before they come back to haunt you. And those demons are attachments. Literally, the things you think you need live or to be happy. For my mom it was her ability to take care of people. Her hysteria around her husband's death wasn't because of his death per se, but because she realized she was confused and on a basic level realized couldn't plan the funereal or deal with the myriad other things she was used to doing. Again, she was the smart and competent one, and always took charge. And when she couldn't (because of the memory impai…
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