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Dr. Richard Bruno, HD, PhD Director, International Centre for Polio Education and author of The Polio Paradox Hosts The Harvest Center’s Post-Polio Coffee House. We share his Tips of PPS information. |
Every issue of Bruno "Bytes" is available in PDF format at the bottom of this page.
Feel free to print and share these.
Just "Click" on words highlighted in BOLD for the complete article (or) download the PDF version of Bruno Bytes (below).
NOTE: We collaborate with Dr. Bruno to publish Bruno Bytes Quarterly.
Feel free to print and share these.
Just "Click" on words highlighted in BOLD for the complete article (or) download the PDF version of Bruno Bytes (below).
NOTE: We collaborate with Dr. Bruno to publish Bruno Bytes Quarterly.
Bruno Bytes - 3rd Quarter 2020
On the topic of “Brain Boosting” Supplements
Dr. Bruno’s Original Post:
Study Discovers Multiple Unapproved Drugs in “Brain Boosting” Supplements.
Could Over-the-Counter “Smart Drugs” Pose Health Risks?
From Newswise, by American Academy of Neurology (AAN)
Supplements that claim to improve mental focus and memory may contain unapproved pharmaceutical drugs and in potentially dangerous combinations and doses, according to a new study published in the September 23, 2020, online issue of Neurology® Clinical Practice, an official journal of the American Academy of Neurology. Researchers found five such drugs not approved in the United States in the supplements they examined. The supplements are sometimes called “nootropics,” “smart drugs” or “cognitive enhancers.”
“Over-the-counter cognitive supplements are popular because they promise a sharper mind, but they are not as closely regulated as pharmaceutical drugs,” said study author Pieter A. Cohen, M.D., of Harvard Medical School in Boston, Mass. “Use of these supplements poses potentially serious health risks. Not only did we detect five unapproved drugs in these products, we also detected several drugs that were not mentioned on the labels, and we found doses of unapproved drugs that were as much as four times higher than what would be considered a typical dose.”
The COMPLETE Article
On the topic of CBD and Drug Interactions
Dr. Bruno’s Original Post: CAUTION: CBD and Rx Drug Interactions.
(Check you meds against the list of drugs to be watched at Drugs.com
From Newswise and the Penn State College of Medicine
Newswise — Cannabinoid-containing products may alter the effects of some prescription drugs, according to Penn State College of Medicine researchers. They published information that could help medical professionals make safe prescribing choices for their patients who use prescription, over-the-counter or illicit cannabinoid products.
Kent Vrana, professor and chair of pharmacology at the College of Medicine, and Paul Kocis, a pharmacist at Penn State Health Milton S. Hershey Medical Center, compiled a list of 57 medications that may not function as intended when used with medical cannabinoids, CBD oil (hemp oil) and medical or recreational marijuana. The list was published in the journal Medical Cannabis and Cannabinoids.
The medications on the list have a narrow therapeutic index, meaning they are prescribed at specific doses – enough to be effective, but not enough to cause harm. Vrana says it’s important for medical professionals to consider the list when prescribing medical cannabinoids and how it may affect other medications a patient is taking.
The COMPLETE Article
On the topic of Diaphragm Weakness and Sleep Apnea
Question: Can sleep apnea be related to a weakened diaphragm? During my last surgery they kept waking me to breathe. I've never experienced this during any surgery.
Dr. Bruno’s Response: You need to remember that muscles are not damaged in polio survivors; it’s the nerves that turn on the muscles that are damaged. The nerves in your brain stem that make you breathe were likely damaged and can cause “CENTRAL” SLEEP APNEA, where your brain forgets to tell your diaphragm to move. Damage can also cause “OBSTRUCTIVE“ SLEEP APNEA, which is when the muscles of your throat get floppy and close off your airway. Your problem during surgery was more likely obstructive apnea but could have been central as well. A sleep study could tell you which one it was, keeping in mind that you could have both kinds of apnea.
On the topic of the Herbal Supplement GABA
Question: Is the herb supplement GABA (Gamma-Aminobutyric Acid) something that could be beneficial for those sleepless nights?
I currently take melatonin to help sleep but thought this could be a better option.
Dr. Bruno’s Response: There is no good research on GABA supplements aiding sleep. Researchers haven't confirmed whether GABA supplements work or even if they reach the brain to have any effect. Save your money and the any side effects. I would recommend you talk to your doctor about having a sleep study to find out why you can't sleep.
On the topic of Medications like Adderall or Strattera
Question: Could you please tell me about this med Adderall or better yet Strattera which is atomoxetine (much higher cost, said to have less chance of addiction) for ADHD and to support weight loss.
Dr. Bruno’s Response: In my opinion, no stimulant should be taken to “support” weight loss or to treat fatigue. These drugs suppress dopamine receptors in the brain and will eventually increase fatigue and concentration problems. If you have ADHD as an adult you need to see a specialist and consider cognitive behavioral therapy instead of medication.
On the topic of the Medication Propranolol
Question: My neurologist put me on 80 mg propranolol ER a few years back for essential tremors. I still have tremors and don't feel it's doing me any good, except I'm more tired. I finally said I want to wean off this med. The PA sent in a script for 60 mg and told me after 7 days to stop it completely. They did tell me keep an eye on my blood pressure. I am so concerned about the after effects of going off this so rapidly.
Dr. Bruno’s Response: First, propranolol causes fatigue in polio survivors and will decrease blood pressure. It’s one of the drugs polio survivors should question when prescribed.
Second, stopping quickly can cause a spike in blood pressure and heart rate. With any drug, weaning isn’t “take less and after 7 days stop it completely.” That’s cold turkey. The drug company’s recommendations are “when discontinuation of [propranolol ER] is planned…the dosage should be gradually reduced over a period of at least two weeks and the patient should be carefully monitored."
I recommend you let the physician wean medications, not the physician assistant. I would call the doctor’s office and demand a prescription that allows you to taper slowly over the course of two weeks as the manufacturer of the drug recommends.
On the topic of Polio Infected Siblings and Neighbors
Dr. Bruno’s Post: From THE POLIO PARADOX:
“In 5% to 20% of households where poliovirus attacked one family member, another was also stricken. From 1909 to 1955 more than 2000 family members in over 1000 households were surveyed in which at least one person had polio. On average if one child in a household became ill he "shared" polio with one other sibling of similar age. Just over half of those who became ill were paralyzed, while the others had flu-like symptoms ranging from a fever, sore throat and nausea to a stiff neck and muscle pain. This "minor illness" was caused by the poliovirus but may never have been diagnosed as polio at all, or may have been called "abortive" or "non-paralytic" polio. In three-quarters of the households, the first case of polio was paralytic and the second was "non-paralytic."
Bottom line: there's about a 1-in-5 chance that if you had paralytic polio one of your brothers or sisters had non-paralytic polio and may not even have known it.
On the topic of Polio Compromising the Immune System
Question: Since we’ve had Polio and now PPS, are we classified as having a compromised immune system?
Dr. Bruno’s Response: NO. Having had polio does not mean you had a compromised immune system. And having PPS has nothing to do with a compromised immune system.
On the topic of Restless Legs at Night
Question: I’ve had restless legs for years. It feels like I need to get up and move my legs because they won’t stay still. My doctor prescribed 2 mg. of Ropinorole before bedtime. Is it common with PPS?
Dr. Bruno’s Response: “Need to get up and move my legs” is the definition of RLS, restless legs syndrome. Legs that “won’t stay still” is the definition of PLMS (Periodic Leg Movements in Sleep).
At the Post-Polio Institute, we discovered that about 1.0 mg of alprazolam 30 minutes before bed stops the leg movements.
Search For:
"Sleep Issues" in the ENCYCLOPEDIA of POLIO & PPS “Articles (by Subject)”
and
"Restless Legs" in the “Complete Encyclopedia Index” where you will find 17 entries.
On the topic of Saving What you Have
Question: My wrists and arms are taking a beating, especially getting up out of a chair, couch, etc. I use KAFOs on both legs. I am trying to reduce my "ups and downs." Can you help me with other suggestions? I’m trying to avoid a wheel chair as long as I can.
Dr. Bruno’s Response: Perhaps you can raise the chair/couch with thicker/additional cushions or with "blocks" to raise the entire thing.
However, avoiding a wheelchair as long as you can is THE recipe for post-polio disaster. If you wait "as long as you can" there will be no motor neurons or strength left. You need the wheelchair NOW to save what you have!
On the topic of Undiagnosed Polio
Question: I have a friend who at the age of 79 is now developing weakness in her hips. She was around me when I got polio and her cousin was the carrier. The question is can she have a normal EMG I still have had polio? The doctor told her that she could not have had polio because her nerves are fine.
Dr. Bruno’s Response: 10-15% of polio survivors have NORMAL EMGs because their nerves were damaged but not killed. So there are no sprouts to show up on the EMG.
From THE POLIO PARADOX:
On the topic of Rolling Walkers with Seats
Dr. Bruno's Original Post:
SEATED WALKERS
I know. “Seated walker” is an oxymoron. And so are most walkers with seats. You want support when you walk and a solid seat when you need a break. The problem is most walkers with seats have bars in the back to hold up the seat. Those bars prevent you from getting your body “inside” the wheelbase and handles of the walker. You end up having to lean forward so you don't hit your shins or knees on the seat support bars.
There are a very few walkers with a long wheelbase and adjustable handles that allow you to walk “inside” the frame and be supported, e.g., the Lumex Walkabout Allura/Allura LX Rollator (LX5000LX-3T). Less expensive is the OasisSpace Lightweight Aluminium Rollator Walker.
Dr. Bruno’s Original Post:
Study Discovers Multiple Unapproved Drugs in “Brain Boosting” Supplements.
Could Over-the-Counter “Smart Drugs” Pose Health Risks?
From Newswise, by American Academy of Neurology (AAN)
Supplements that claim to improve mental focus and memory may contain unapproved pharmaceutical drugs and in potentially dangerous combinations and doses, according to a new study published in the September 23, 2020, online issue of Neurology® Clinical Practice, an official journal of the American Academy of Neurology. Researchers found five such drugs not approved in the United States in the supplements they examined. The supplements are sometimes called “nootropics,” “smart drugs” or “cognitive enhancers.”
“Over-the-counter cognitive supplements are popular because they promise a sharper mind, but they are not as closely regulated as pharmaceutical drugs,” said study author Pieter A. Cohen, M.D., of Harvard Medical School in Boston, Mass. “Use of these supplements poses potentially serious health risks. Not only did we detect five unapproved drugs in these products, we also detected several drugs that were not mentioned on the labels, and we found doses of unapproved drugs that were as much as four times higher than what would be considered a typical dose.”
The COMPLETE Article
On the topic of CBD and Drug Interactions
Dr. Bruno’s Original Post: CAUTION: CBD and Rx Drug Interactions.
(Check you meds against the list of drugs to be watched at Drugs.com
From Newswise and the Penn State College of Medicine
Newswise — Cannabinoid-containing products may alter the effects of some prescription drugs, according to Penn State College of Medicine researchers. They published information that could help medical professionals make safe prescribing choices for their patients who use prescription, over-the-counter or illicit cannabinoid products.
Kent Vrana, professor and chair of pharmacology at the College of Medicine, and Paul Kocis, a pharmacist at Penn State Health Milton S. Hershey Medical Center, compiled a list of 57 medications that may not function as intended when used with medical cannabinoids, CBD oil (hemp oil) and medical or recreational marijuana. The list was published in the journal Medical Cannabis and Cannabinoids.
The medications on the list have a narrow therapeutic index, meaning they are prescribed at specific doses – enough to be effective, but not enough to cause harm. Vrana says it’s important for medical professionals to consider the list when prescribing medical cannabinoids and how it may affect other medications a patient is taking.
The COMPLETE Article
On the topic of Diaphragm Weakness and Sleep Apnea
Question: Can sleep apnea be related to a weakened diaphragm? During my last surgery they kept waking me to breathe. I've never experienced this during any surgery.
Dr. Bruno’s Response: You need to remember that muscles are not damaged in polio survivors; it’s the nerves that turn on the muscles that are damaged. The nerves in your brain stem that make you breathe were likely damaged and can cause “CENTRAL” SLEEP APNEA, where your brain forgets to tell your diaphragm to move. Damage can also cause “OBSTRUCTIVE“ SLEEP APNEA, which is when the muscles of your throat get floppy and close off your airway. Your problem during surgery was more likely obstructive apnea but could have been central as well. A sleep study could tell you which one it was, keeping in mind that you could have both kinds of apnea.
On the topic of the Herbal Supplement GABA
Question: Is the herb supplement GABA (Gamma-Aminobutyric Acid) something that could be beneficial for those sleepless nights?
I currently take melatonin to help sleep but thought this could be a better option.
Dr. Bruno’s Response: There is no good research on GABA supplements aiding sleep. Researchers haven't confirmed whether GABA supplements work or even if they reach the brain to have any effect. Save your money and the any side effects. I would recommend you talk to your doctor about having a sleep study to find out why you can't sleep.
On the topic of Medications like Adderall or Strattera
Question: Could you please tell me about this med Adderall or better yet Strattera which is atomoxetine (much higher cost, said to have less chance of addiction) for ADHD and to support weight loss.
Dr. Bruno’s Response: In my opinion, no stimulant should be taken to “support” weight loss or to treat fatigue. These drugs suppress dopamine receptors in the brain and will eventually increase fatigue and concentration problems. If you have ADHD as an adult you need to see a specialist and consider cognitive behavioral therapy instead of medication.
On the topic of the Medication Propranolol
Question: My neurologist put me on 80 mg propranolol ER a few years back for essential tremors. I still have tremors and don't feel it's doing me any good, except I'm more tired. I finally said I want to wean off this med. The PA sent in a script for 60 mg and told me after 7 days to stop it completely. They did tell me keep an eye on my blood pressure. I am so concerned about the after effects of going off this so rapidly.
Dr. Bruno’s Response: First, propranolol causes fatigue in polio survivors and will decrease blood pressure. It’s one of the drugs polio survivors should question when prescribed.
Second, stopping quickly can cause a spike in blood pressure and heart rate. With any drug, weaning isn’t “take less and after 7 days stop it completely.” That’s cold turkey. The drug company’s recommendations are “when discontinuation of [propranolol ER] is planned…the dosage should be gradually reduced over a period of at least two weeks and the patient should be carefully monitored."
I recommend you let the physician wean medications, not the physician assistant. I would call the doctor’s office and demand a prescription that allows you to taper slowly over the course of two weeks as the manufacturer of the drug recommends.
On the topic of Polio Infected Siblings and Neighbors
Dr. Bruno’s Post: From THE POLIO PARADOX:
“In 5% to 20% of households where poliovirus attacked one family member, another was also stricken. From 1909 to 1955 more than 2000 family members in over 1000 households were surveyed in which at least one person had polio. On average if one child in a household became ill he "shared" polio with one other sibling of similar age. Just over half of those who became ill were paralyzed, while the others had flu-like symptoms ranging from a fever, sore throat and nausea to a stiff neck and muscle pain. This "minor illness" was caused by the poliovirus but may never have been diagnosed as polio at all, or may have been called "abortive" or "non-paralytic" polio. In three-quarters of the households, the first case of polio was paralytic and the second was "non-paralytic."
Bottom line: there's about a 1-in-5 chance that if you had paralytic polio one of your brothers or sisters had non-paralytic polio and may not even have known it.
On the topic of Polio Compromising the Immune System
Question: Since we’ve had Polio and now PPS, are we classified as having a compromised immune system?
Dr. Bruno’s Response: NO. Having had polio does not mean you had a compromised immune system. And having PPS has nothing to do with a compromised immune system.
On the topic of Restless Legs at Night
Question: I’ve had restless legs for years. It feels like I need to get up and move my legs because they won’t stay still. My doctor prescribed 2 mg. of Ropinorole before bedtime. Is it common with PPS?
Dr. Bruno’s Response: “Need to get up and move my legs” is the definition of RLS, restless legs syndrome. Legs that “won’t stay still” is the definition of PLMS (Periodic Leg Movements in Sleep).
At the Post-Polio Institute, we discovered that about 1.0 mg of alprazolam 30 minutes before bed stops the leg movements.
Search For:
"Sleep Issues" in the ENCYCLOPEDIA of POLIO & PPS “Articles (by Subject)”
and
"Restless Legs" in the “Complete Encyclopedia Index” where you will find 17 entries.
On the topic of Saving What you Have
Question: My wrists and arms are taking a beating, especially getting up out of a chair, couch, etc. I use KAFOs on both legs. I am trying to reduce my "ups and downs." Can you help me with other suggestions? I’m trying to avoid a wheel chair as long as I can.
Dr. Bruno’s Response: Perhaps you can raise the chair/couch with thicker/additional cushions or with "blocks" to raise the entire thing.
However, avoiding a wheelchair as long as you can is THE recipe for post-polio disaster. If you wait "as long as you can" there will be no motor neurons or strength left. You need the wheelchair NOW to save what you have!
On the topic of Undiagnosed Polio
Question: I have a friend who at the age of 79 is now developing weakness in her hips. She was around me when I got polio and her cousin was the carrier. The question is can she have a normal EMG I still have had polio? The doctor told her that she could not have had polio because her nerves are fine.
Dr. Bruno’s Response: 10-15% of polio survivors have NORMAL EMGs because their nerves were damaged but not killed. So there are no sprouts to show up on the EMG.
From THE POLIO PARADOX:
- “Almost 10% of patients who had a history of polio and with muscle weakness, and who were reporting new pain, fatigue or weakness today, had normal regular EMGs, meaning that there was no EMG evidence that they ever had polio.
- On the other hand, it has been suggested that every polio survivor get an EMG to identify muscles that were NOT affected by the poliovirus to identify which limbs can be exercised without worrying that they will become weaker. One pre-exercise study using regular EMG found that almost 25% of paralytic polio survivors' limbs had no evidence of motor neurons having been killed. Those limbs were classified as having "no clinical polio" and therefore could be exercised like anyone else's muscles. However, neurologist Carlos Luciano using a special "macro" EMG found over sprouted motor neurons in 85% of muscle that were thought to have had "no clinical polio." And research by David Bodian and Alan McComas showed that seemingly unaffected muscles had lost 40% of the motor neurons . . . .”
On the topic of Rolling Walkers with Seats
Dr. Bruno's Original Post:
SEATED WALKERS
I know. “Seated walker” is an oxymoron. And so are most walkers with seats. You want support when you walk and a solid seat when you need a break. The problem is most walkers with seats have bars in the back to hold up the seat. Those bars prevent you from getting your body “inside” the wheelbase and handles of the walker. You end up having to lean forward so you don't hit your shins or knees on the seat support bars.
There are a very few walkers with a long wheelbase and adjustable handles that allow you to walk “inside” the frame and be supported, e.g., the Lumex Walkabout Allura/Allura LX Rollator (LX5000LX-3T). Less expensive is the OasisSpace Lightweight Aluminium Rollator Walker.
Seated Walker
|
Lumex Walkabout Allura/Allura LX Rollator (LX5000LX-3T)
|
OasisSpace Lightweight Aluminium Rollator Walker
|
"Post-Polio Fatigue" Log Here
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Complete "Bruno Bytes" from Previous Months - in easily printable PDF format below
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2020
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2019
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2018
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2017
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2016
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2015 and 2014
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“Bruno Bytes” – How it all began
“Bruno Bytes” are published monthly, through a combined effort between Dr. Richard L. Bruno, HD, PhD (biography above) and
the Pa. Polio Survivor’s Network. They are answers to questions posted in the “Post-Polio Coffee House” (on Facebook).
This partnership began in November, 2014.
“Bruno Bytes” help to teach polio survivors, spouses, caregivers and health care professionals about the many and varied topics related to the physical and emotional issues associated with having had polio and managing PPS.
“Bruno Bytes” are for education only and any personal treatment plan must be determined in association with a PPS knowledgeable health care professional.
“Bruno Bytes” are published monthly, through a combined effort between Dr. Richard L. Bruno, HD, PhD (biography above) and
the Pa. Polio Survivor’s Network. They are answers to questions posted in the “Post-Polio Coffee House” (on Facebook).
This partnership began in November, 2014.
“Bruno Bytes” help to teach polio survivors, spouses, caregivers and health care professionals about the many and varied topics related to the physical and emotional issues associated with having had polio and managing PPS.
“Bruno Bytes” are for education only and any personal treatment plan must be determined in association with a PPS knowledgeable health care professional.