Replies

• Thank you Pam. Yes it is good to keep up with healthy fluid intake as you point out. Arienne is always well hydrated, and not afraid of salt so unlikely to be an issue with her stroke. To answer your question on “watershed infarcts” the brain has incredible blood flow interconnections. At the base of this beautiful organ exists the “Circle of Willis” whereby blood supply from the the anterior (front) carotid arteries circulation and posterior (back) vertebral arteries join helping to provide alternative flow to both sides of the brain should one vessel get occluded or blocked. Now as vessels get smaller and smaller, like a spider’s cobweb spreading out over the multiple surfaces of the brain, there are numerous areas of the brain that have little backup or what we refer to as collateral flow. As for watershed infarcts when large arteries become smaller arterioles, and eventually tiny capillaries the blood pressure (BP) significantly drops in a gradient along the way. If your systemic blood pressure falls below “normal” then the smallest capillaries are starved of oxygen and nutrients. This is a watershed infarct - both superficial and deep areas of the brain where terminal branches of major cerebral vessels meet suffer. So what caused Arienne’s low blood pressure or HYPOtension. Last year my lovely wife took a small dose of a cold medication in hopes of helping her sniffling nose from a recent cold. She dislikes taking any meds if possible. Next time you’re in a pharmacy check out the cold meds and nearly all of them contain phenylephrine, a potent vasoconstrictor of vessels in your nose if applied topically in a nasal spray. Despite multiple studies, and systematic reviews showing oral phenylephrine is NO BETTER than placebo why is it in so many OTC cold, sinus, and flu products. Perhaps it’s a financial decision because it’s cheap and FDA approved from decades ago. A better oral vasoconstrictor is pseudoephedrine but this was moved behind pharmacy counters twenty years ago because novice “home chemists” could easily convert this to methamphetamine. Long story short a small dose of phenylephrine gave Arienne a rare syndrome where her blood pressure skyrocketed giving her reversible cerebral vasoconstriction syndrome (RCVS). To “be on the safe side” physicians advised her to go on a blood pressure medication called an ACE inhibitor to “keep her blood pressure in a normal range — below 120/80. Arienne has struggled with symptomatic LOW blood pressure on the lowest dose possible (perindopril 2 mg/day) for months. If her BP is too low she doesn’t take any meds that day. Less than 24 hours prior to her stroke she took her daily blood pressure reading and asked me if she should take her meds. I said absolutely not because it was ~80/50 but too late as she took the perindopril minutes earlier. She took a lot of salt with her coconut keto coffee but felt dizzy at times despite elevating her legs. Early the next morning at 0400 her blood pressure likely dropped again as she needed to hold onto the wall to get to the bathroom. She never woke me up so I had no idea until I recognized her stroke-in-progress at 0800 later when I woke her up. Therefore LOW BP - induced by medication - was the root cause of her watershed infarctions of which hundreds of areas of her left hemisphere suffered hypoxia and cell death. The brain try’s to stay alive by a mechanism called auto regulation. As neurons and supportive cells die they swell and further diminish oxygen and blood flow so the brain orders up high blood pressure in a desperate attempt to supply dying brain cells. It then becomes a roller coaster akin to higher doses of insulin chasing elevated blood sugars followed by crashes of blood glucose or hypoglycaemia. Similarly reflex treatment for high blood pressure with multiple medications can precipitously drop BP levels leading to more watershed infarctions — a vicious cycle. Standard stroke protocol keeps Arienne on low dose perindopril but we are extremely cautious with multiple blood pressure checks and seriously question the “normal blood pressure of 120/80” for a female close to 80 years-of-age! Arienne really appreciates all the giant hugs and friendly community support. Thank you from the bottom of our hearts to everyone ❤️ ❤️
  March 1, 2025

• Hi! (I'm sorry for some reason I can't see your name on the post for some reason. We're still working on the functionality of these discussions.) I just came across your post, and wanted to check in and follow up! Have you made any progress? or made any decision on the topic you'd like to focus your research project on for your PhD? Also, We'd love it if you would attend next weekend's Journal Club if you would be available next Sat 3/8, and you can discuss with the group during the Q&A session after the presentation. :) A brief announcement was sent out in an email to the group yesterday, and we'll be doing a round of social media posts with the details, and another email next week as reminders on how to log in to access the broadcast, date and time etc :)
  February 28, 2025

• Hi John, as I was just saying in your email with the picture of Arienne walking in -20 weather, and already walking 2 miles. Wow, just wow! She is incredible! She sure is an inspiration! I'm going to get out and walk with her in mind - her strength and stamina and healing! We are so routing for her full recovery and for both of you, as you navigate this journey! I have to look up this 'watershed stroke' and hypotension. I hate that this happened right after the symposium, we all get pretty dehydrated at events, and being in ketosis we need extra hydration. I'm going to look more into this. and sending a reminder to everyone to stay hydrated, if this is what possibly contributed to her low blood pressure? I've also been wanting to look into Nattokinase, and find out more. I'm interested in hearing any perspectives for recovery in post stroke/Mi, but also, especially in, a preventative scenario. (on a personal level, my CIMT is not great on the rt side, much to my chagrin, from my years of 'not knowing' and doing what we were told was 'healthy' in my latter years, and my younger years of abusive eating of junk food addiction ugh, and don't want to have a stroke in the future! My CAC is zero though, which gives me some piece of mind. I might be doing a CTA sometime in the near future if necessary to investigate further.) Final thought, I found it profoundly interesting one of the responses on the twitter thread that Chris Cornell posted from a doctor of PT, I think she was? The many different movement exercises that she was recommending. Even in a mirror, so that the brain could see what the other side was doing, and try to get the stroke effected side to mirror it! The brain is phenomenal! Just functional movement, and standing from a seated position, and arm and leg movements. Great, I hope it ALL helps!! Sending more giant hugs, and thank you for the updates as we travel together on this health/life journey! ~Pam
  February 28, 2025

• Thank you to both Mark and Chris for their kind remarks and comments
  February 28, 2025

• John, we are all devastated by this story We love you and Arienne you both are inspirations to all of us. It sounds like you are already breaking all the rules and she is getting better quicker than anyone would ever anticipate for someone of her age . We can all talk about all the science data, but the human spirit drives recovery I am not a neurologist, but certainly the world now with open access Internet can give you a lot of good perspective and additional supplements and remedies to the mainstream things we prescribe after a stroke. As you both have figured out, movement is medicine and movement is way important than any of the drugs when it comes to recovery With her lipid profile, I think the statin is a trade-off. we never know what is called the “counter factual”. That is what would happen if we did or did not take something. All you can do is use your best hunch, but if there are significant side effects with the statin, then stop it or use a water soluble statin such as pravastatin or crestor. these tend to be tolerated better as does as does zetia. But in her case, you have no idea whether cholesterol had anything to do with her stroke. The aspirin and clopridigril I think are definitely net positive Arienne is a fitness trainer so I would listen to her whatever she wants to do is good :) Keep us posted on the progress. We are here for you.
  February 28, 2025

• John, we are all devastated by this story We love you and Arienne you both are inspirations to all of us. It sounds like you are already breaking all the rules and she is getting better quicker than anyone would ever anticipate for someone of her age . We can all talk about all the science data, but the human spirit drives recovery I am not a neurologist, but certainly the world now with open access Internet can give you a lot of good perspective and additional supplements and remedies to the mainstream things we prescribe after a stroke. As you both have figured out, movement is medicine and movement is way important than any of the drugs when it comes to recovery With her lipid profile, I think the statin is a trade-off. we never know what is called the “counter factual”. That is what would happen if we did or did not take something. All you can do is use your best hunch, but if there are significant side effects with the statin, then stop it or use a water soluble statin such as pravastatin or crestor. these tend to be tolerated better as does as does zetia. But in her case, you have no idea whether cholesterol had anything to do with her stroke. The aspirin and clopridigril I think are definitely net positive Arienne is a fitness trainer so I would listen to her whatever she wants to do is good :) Keep us posted on the progress. We are here for you.
  February 28, 2025

• I am currently reading "Super Gut" by William Davis. He talks about gut dysbiosis which can wreak havoc on our entire body/brain, including hormone sensitivity. In the book, he provides explanations of dysbiosis, the ensuing body disruptions, and ways to solve most issues. He includes case studies (testimonies) and recipes for pro- and prebiotics. Have you considered the gut microbiome in her progress?
  February 25, 2025

• Hi John, I was so sorry to learn of this news. Please know that my thoughts are with both you and Arienne during this incredibly challenging time. I really enjoyed meeting both of you at the 2024 Boca Symposium and then catching up again just last month at the 2025 Symposium. It was clear to me then how much of a fighter Arienne is—given everything she has already overcome and accomplished—and I have no doubt that she is up for this challenge as well. I deeply admire the strength, determination, and resilience that you both have demonstrated throughout this process. It’s inspiring to see her making such rapid progress, and I have no doubt that her commitment to health and fitness is playing a major role in her recovery. I appreciate the well-thought-out questions you've posed and the care you’re taking in considering all available options. While I don’t have clinical expertise in post-stroke rehabilitation, I’m more than happy to help spread the word and encourage others in our community—especially those with relevant experience—to weigh in with their insights. The collective knowledge within this space is truly remarkable, and I hope you’re able to gather valuable perspectives to help guide Arienne’s continued recovery. Please know that both of you are in my thoughts, and if there’s any specific way I can support you—whether by amplifying this discussion or contributing in another way—please don’t hesitate to let me know. Sincerely, Chris
  February 25, 2025

• I would like to know what evidence the oncologist was relying on to give that advice. Having gone through a little spell of that “C” myself, I dos very well by being in very low GKI and fasting 2 days before and 2 days after weekly treatments for 6 weeks. Misconceptions like this makes me a little angry. Update please!
  February 20, 2025

• Henry, I know this is an adult thread, but can you update us about this patient? Thank you..
  February 20, 2025