Mayo PPRC Basics (Quick Summary)

Mayo PPRC Basics (Quick Summary)

After being totally immersed in daily classes, doctor’s rounds, therapies, and discussion groups, it takes some effort to step back and try to get organized around all of the principles that we learned at the PPRC.  My notebook is completely full of notes and here is my first effort at summarizing them (in no particular order):

  • ELIMINATION OF PAIN BEHAVIORS & NEUROPLASTICITY BASICS — This one is huge and an unexpected component for us.  Big rule as soon as you arrive at the PPRC: no more talking about the pain.  At all.  So, my parents do not know, and have not known, how I am feeling since early January 2016 (other than through observation of me) because they do not ask any more and I do not complain any more.  Talking about pain is a “pain behavior”.  MRI studies have shown that the pain center in the brain actually lights up when one is thinking about pain vs. being distracted from it. Fortunately for us, our brains are neuroplastic and we can grow new neuropathways to rewire our brains.  By NOT talking about or focusing on the pain/symptoms, we tell our brain that those pain/symptom neuropathways are not important and they shrink down.  By functioning normally despite pain/symptoms, we grow new, healthy neuropathways.  At the PPRC, we learn how to make the fundamental shift in thinking from “how I feel?” to “how well do I function?”.  Feeling better (decrease in pain & symptoms) is a great side effect of functioning better.  Functioning better is the goal.  Other pain behaviors besides talking about pain: thinking about pain, bandages, ice packs, compression stockings (what POTS people wear to help constrict blood flow), pain medications, and anything one would do or avoid doing because of the pain.  So then, not going to school becomes a pain behavior, sitting around for hours watching Netflix becomes a pain behavior, being grumpy is a pain behavior, saying no to activities is a pain behavior.  Parent pain behaviors are a no-no too.  This includes posting about your child’s pain/symptoms/doctor visits/etc. in social media.  My mom does not post (and never has) anything about my illness in social media (at my request) and this blog will be the last time that I type anything about my pain and/or symptoms.  Upward & onward – we are completely done talking about it.
  • PHYSICAL THERAPY – A WORKING autonomic nervous system is responsible for automatic contraction and expansion of the blood vessels. POTS patients have blood flow issues due to IMPAIRED autonomic nervous systems and they therefore have to get blood flow going by different means … EXERCISE.  Not just for general health, but in the case of this illness, exercising is how you will get your blood to flow.  Blood flowing = blood to your brain, blood to your extremities, blood to your organs, eyesight and hearing improved, less nerve pain, less brain fog, less fatigue. Basically all things POTS get better. Additionally, building stronger muscles (weight training) and a bigger heart (cardio) are key for better blood circulation in order to pump blood efficiently around the body.  In PT, we learn a consistent DAILY exercise routine – 30 minutes breathy & sweaty cardio plus 30 minutes of another activity.
  • OCCUPATIONAL THERAPY  — Learning moderation, scheduling & tracking of daily living & activities, energy-saving techniques, proper body mechanics, & time management.  We are in one hour of OT daily.  Boy, are they thorough.  They don’t just teach this stuff to us; they follow up on every single detail with the parents — tailored for each child.  The primary focus is on learning BALANCE IN LIFE between self-care, work, & leisure activities.  Self-care includes things like sleep hygiene, personal grooming, exercise, nutrition, relaxation, & positive self-talk.  Work encompasses school, homework, volunteer work, chores, and/or job or other responsibility.  Leisure includes passive leisure activities (reading, TV, video games, crafts), active leisure activities (sports, shopping, bowling, hiking, biking, etc), and social leisure activities (friends, family, texting/phone, extracurriculars).
  • RELAXATION — Autonomic Dysfunction causes increased heart rates, increased blood pressure, shortness of breath, stomach aches, anxiety and an imbalanced release of adrenaline, cortisol, and other hormones due to an overactive “flight or flight” response by our bodies.  We learn a routine of diaphragmatic breathing (deep breathing so that your belly feels like it’s filling up a balloon), which greatly reduces nausea as well, 3 times a day for 10 minutes.  Why is breathing so important? Because it pushes up your parasympathetic (”rest & digest”) nervous system, which brings down the overworked sympathetic (”flight or flight”) response.  It also properly oxygenates your entire body (see more extensive blog entry on diaphragmatic breathing).  We also do daily biofeedback, so we can see results in our heart rates and brainwaves on a monitor while we practice our breathing.  We also learn progressive muscle relaxation where they tighten up muscles throughout body and then relax them.  Relaxation is the key to controlling symptoms and decreasing the “pain/symptom” areas of the brain.
  • MODERATION — Lots of it.  This is not the kind of moderation where you cancel going to that party last minute because you feel so sick.  None of that anymore.  Moderation means planning out ahead what will work for your energy level and what won’t.  For instance, they recommend no AP classes in high school.  POTS kids just don’t do well with long hours of homework and extra pressure.  Moderation can also come in the form of knowing ahead of time how much physical exercise you can do, or how late you can stay up – if you’re going to get all 8.5-9.5 hours of required sleep each night.
  • SLEEP HYGIENE – Sleep hygiene is very important as many POTS patients have big insomnia issues.  Sleep efficiency can lead to a more restful night and an active day.  There are 3 stages in the sleep cycle and you cycle up and down through these 3 stages many times during the night.  Stage 1 is light sleep where you awaken easily, then stage 2, then stage 3, which is your deep, restorative sleep.  Stage 3 is the most important part of the sleep cycle because this is when your body rests and repairs itself.  Then you go back through stage 2, then stage 1 again, and back through them again and again. REM (dream) sleep happens close to stage 1, which is why you can awaken easily from a dream (and can remember them).  Over time, if you spend too much time in bed sleeping and napping in small spurts throughout the day, you never get to stage 3 sleep (just stages 1 & 2) so you never get the important restorative sleep.  Also, all this day sleeping can make it very difficult to sleep at night.  This is why napping all day can lead to chronic tiredness over time because there’s no restorative sleep.  Key points here:
    • 8.5-9.5 hours of sleep per night (7.5-8 for adults)
    • have bedtime routine and winding down time
    • no naps
    • no screens 30 min before bed
    • keep same sleep/wake schedule every day (and don’t vary by more than 1 hour on weekends)
  • STRESS MANAGEMENT TECHNIQUES — Pain causes stress and stress intensifies pain.  The PPRC program teaches strategies to break the pain/stress cycles including (to name a few): diaphragmatic breathing, relaxation techniques, meditation, biofeedback, positive imagery, diversion/distraction, positive self-talk (”I will make it through this day” and “I know I am strong enough” vs. “I can’t do this/it’s too hard”), use of humor, goal-setting, & keeping to a schedule.  A separate one-hour class is taught for each one of these techniques listed here — with exercises and role-playing (parents participate in all these as well).
  • BONDING & SOCIALIZATION  – Many of the chronically ill teens at the PPRC have been isolated at home for months or years due to their illnesses.  Isolation can lead to depression and, developmentally speaking, interaction with one’s peer group is WAY more important at this developmental stage than interacting with parents.  Not having a peer group can further contribute to depression.  We re-learn socialization at the PPRC through all-day interaction at the program and additional, mandatory social activities on nights and weekends.  We also form life-long bonds with other kids who understand what we have been through.  This is huge.  Most of us had never met anyone else with our disease and have felt very alone.  We become a big support group for each other.  Bonding and socialization are key components to improvement of pain and symptoms and this is why we are all are required to get back to school full-time on first day after the program.  (A full day of school also keeps us moving and active.)
  • MEDICATIONS – There is a “Chemical Wellness Day” at the PPRC to provide information on the benefits and risks associated with the various classes of medications used in chronic pain conditions.  This is important because many kids who arrive at the PPRC are medicated through the roof on pain meds and antidresspants/antianxiety meds. Studies have shown that long-term use of pain medications (opioids) are ineffective for chronic pain and can often times lead to greater pain in the long run (hyperallegisia), as well as addiction.  Additionally, long-term use of anti-anxiety medications (benzodiazoines), like xanax & valium, can also lead to addiction & greater anxiety over time.  (In fact, no doctors at the Mayo Clinic are even allowed to prescribe Xanax.)  As appropriate, the PPRC tapers kids off (or greatly reduces) the use of any pain/anxiety medications.
  • EMOTIONAL IMPACT OF CHRONIC PAIN – For the kids, developing an awareness of the emotional impact of their chronic pain IS HUGE.  There is not a child (or parent) at the PPRC who has not been severely impacted — not only from the chronic pain and symptoms, but also from the result of not being believed for so long and running around appealing to anyone who would listen that there was something very wrong.  We see tears about this with many kids, as well as parents.  We are helped to recognize all the different ways that our whole family’s lives have been altered by our children’s chronic pain & given strategies to right the ship.  The basic areas they cover on this topic are: exploration of grief and loss, anger management, how self-esteem has been impacted, changes with interpersonal relationships, resentment & forgiveness, getting back to “regular life” (regaining activities & relationships that have been lost … both kids & parents), and relapse prevention.
  • ANXIETY – Many kids who enter the PPRC suffer from anxiety due to living their lives with chronic pain or symptoms (and the feelings of hopelessness that surround chronic illness).  For example, many of the kids have anxiety about trying to get back to school full time due to their conditions.  The PPRC has a process to expose the kids to how a full day of school will be (that’s why the days are very full, structured days).  Additionally, any fears of socialization get addressed with all-day peer interaction & evening/weekend social activities.  Many of the kids who have been isolated for months/years have to relearn socialization.  The kids build their self-confidence through making it through a full-day of activities plus social activities.  This increased self-confidence lowers their anxiety around these (and other similar) activities.  Once they get home and get immediately back to full-time school, they get even more self-confidence from making it through school.  This self-confidence gets stronger and stronger as they continue to stay in school & attend extracurricular/social activities with their peers.
  • PARENT RESPONSE TO SYMPTOMS – For people arriving at the PPRC, there are usually 2 ends of the spectrum for parent responses to their child’s symptoms.  (1) On one end, there are the “pillow flutters” who focus day & night on their sick kids and coddle them 24/7.  This is a natural response when your child has become chronically ill.  These “helicopter” moms tend to completely micromanage every aspect of their sick child’s life because they feel powerless against the disease.  The problem is that a “pillow fluffing/helicopter” response continues to focus the child’s attention on the pain & symptoms (thereby reinforcing those “sick” neuropathways in the brain).  Additionally, the normal, adolescent  transition to independence is critical for long-term life success so it is important to encourage self-problem solving.  Disruptions in this developmental transition can affect your child’s ability to fully function as an adult.  Egads!!  [BTW, my mom was a pillow-fluffing, helicopter mom.  I get it . . . she didn’t know how else to act.  Her intentions were good and she thought she was being a good mom, but the micromanaging was taking years off her life and making me miserable.  Now, no more micromanaging by my mom!  I am responsible for myself and it feels REALLY GREAT to be out of that death spiral … for BOTH of us!] (2) The other extreme on the spectrum of parental response to symptoms is a harsh, punitive response.  This isn’t healthy either – for anyone.  So, the PPRC recommends “WARM NEUTRALITY” as the appropriate, healthy response to pain behavior or symptoms.  This means that parents help us focus on a solution through distraction or other method (for example, talking to us about things that interest us to distract our focus away from our pain/symptoms).  Parents can be supportive and warm, just no talking or focusing on pain/symptoms.  Parents can remind us that they recognize how hard we are trying and that they are proud of us.  Staying “warm & neutral” may not always be easy.  This is where “Faked Bravery” comes in for the parents.  Parents need to put on a brave face for their child.  The only option is to believe that they can overcome this.  Your child will absorb your confidence in them & develop their own confidence over time.  Transfer your faith and hope into them and treat them normally … not like they are sick.

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