Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Symptoms Q&A: 10 Questions About Fatigue, Pain, Sleep and More

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Parkinson’s Symptoms Q&A: 10 Questions About Fatigue, Pain, Sleep and More · Living with Parkinson’s | Bryce Perry

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  You asked, I answer today we're doing again our monthly Q and AI
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  went through the September comments on YouTube and the
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  podcast and I picked out the top 10 questions and I'm answering
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  them right here. These aren't just surface level
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  questions. We're talking about eyes that
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  won't stay open, swallowing problems, weird pains, cramps,
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  fatigue, and even whether too much sleep is from the meds.
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  And stick around because this is going to be real raw.
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  It's sometimes a little funny at the very end.
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  I'll share today's Bryce ISM, one that sums up why I love
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  doing these Q&A episodes so much.
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  Welcome to Living with Parkinson's, The Good, the bad.
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  And the reality? Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Hey everyone, welcome back. If you're new here, I'm Bryce
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  and this is living with Parkinson's, The good, the bad
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  and the reality around here. We don't just talk about
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  Parkinson's. We live it.
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  We laugh about it and when we can or laugh at when we can and
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  we try to figure it out together.
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  And to my regular viewers memberships, you know, inner
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  circle, this whole episode is built from your questions.
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  So if you don't already comment, make this month the month you
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  start to do it. I read and reply to every single
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  comment and drop a question below for October's Q&A and I
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  might be reading your name next time out loud on the next one.
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  OK, so let's get into our first question now.
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  This one came from at Lion and Lamb 4754.
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  Who asked, does anyone else have trouble keeping their eyes open?
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  My eyes closed even when I'm not tired and I don't realize that
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  they're even closed. Does anybody else have this
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  problem? Well, Lion and Lamb, thank you
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  for this question. And that's such a really, it's a
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  great question. And yes, this is a real thing.
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  And it's called eyelid apraxia. Basically the signal from the
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  brain to the eyelids doesn't fire, right?
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  Your eyes close even when you want them to open.
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  You know, I've had a few moments where Carmen looks, looks at me
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  across the room and says like, are you asleep?
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  And I'm like, no, just sitting here, my eyes are shut mid
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  conversation. Not great for convincing people
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  that you're listening, but here's the science behind it.
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  Parkinson's can affect the muscles that open and close your
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  eyelids, and sometimes Botox injections help relax those
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  muscles. Sunglasses also help in bright
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  light. That's really exciting, isn't
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  it? Big, big brain tip there.
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  My tip, don't ignore it. Talk to your neurologist and let
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  the people around you know it's a symptom and you're not being
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  rude. OK, let's do a comment check if
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  that has happened to you. Type me too below my me too in
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  the comments if that's happened to you.
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  OK, moving along. The next one is from at Mccarran
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  who wrote I choke on saliva, water and pills.
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  Is this another brain to body signal misfire?
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  Well, Mccarran, thank you for this.
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  And yes, it is a common problem called dysphyxia.
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  Dysphyxia, Parkinson's can weaken or slow the muscles that
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  help you swallow. So food and liquid don't always
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  go down the right way, you know? Once I tried to swallow water
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  and it shot right back out my nose, right?
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  Kind of gross. Carmen laughed and I coughed for
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  like 10 minutes and it turned into one of those moments where
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  you laugh and you cry all at the same time.
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  Tips. Well, work with a speech
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  therapist who specializes in swallowing.
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  They can teach you safe swallowing techniques.
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  Take smaller bites, tuck your chin in when you swallow, and
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  don't be afraid to thicken your liquids if it keeps you safe.
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  Pills. Ask your pharmacist if they can
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  split or be crushed or even given in liquid form.
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  And if you ever had that awful cough choke combo back.
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  Mccarran up in the comments said been there, been there, been
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  there. OK, moving along.
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  This one is from Knoll LIG 4152 who said you're all ahead,
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  you're all thinking ahead for everything.
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  How do you do it? Well, thank you.
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  Another great question. The truth is, Parkinson's forces
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  you to think ahead. I can't just wing it anymore.
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  For example, if I've got a meeting or a road trip, I have
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  to plan my meds, my snacks, even bathroom stops.
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  Carmen has this just in case. Bag, meds, tissue, water, even
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  snacks. It's like it's like being a Mary
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  Poppins for Parkinson's tips. Keep a small kit with a kit with
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  meds, water, and maybe even a protein bar.
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  Build habits like always keep extra meds in your car or or
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  your spouse's purse or your partner's purse.
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  And don't be afraid to cancel or reschedule if your body just
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  says not today. Now, if Parkinson's has turned
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  you into a planner, type planner in the comments.
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  And if you got a hack for planning ahead, share it in the
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  comments so we can all steal it. OK, well here's a practical
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  question from at Analga 5932 and Analga Analga 5932 who said
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  looking for the tracker you mentioned.
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  Oh my God, and thank you. If you're talking about the
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  fatigue tracker I showed in the video, fatigue is one of the
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  hardest things to explain because people can't see it.
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  I built that tracker to help show the ups and downs on paper
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  and people can see that one day I'm drained by noon, another day
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  I'm making it till dinner. And it makes the invisible
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  visible. So tips?
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  I track my energy on a one to 10 scale a few times a day.
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  Share it with your family or your friends or with your care
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  team and it helps them understand why you have to
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  cancel plans or why you need rest.
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  And yes, I'll link the tracker in the description here so you
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  can grab it because I totally forgot it in one of the videos I
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  talked about it. And if you struggle with
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  fatigue, type in always tired in the comments.
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  Please see how many? Let's see how many of us are
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  nodding along. Get it nodding along.
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  OK anyway, next question, and this one is from new life.
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  New life puppets six O 7. Who said I love the names?
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  I love you guys, come with the great names, new life puppets.
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  Anyway, I whistle words and sometimes use the wrong ones.
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  Do you have something on that? Yes, the Sterthea and sometimes
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  Apthea. Apthea, apstasia, dystarsia and
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  apstasia Parkinson's affecting your speech and your word
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  finding. Now one time I asked Carmen for
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  a fork and instead I asked for a flashlight.
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  She just looked at me and said well are you eating dinner or do
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  you want to go camping or are we eating in the dark?
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  What do you need the flashlight for?
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  Ha ha ha. Well, science says this.
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  Parkinson's affects the muscles that help you form words and the
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  brain circuits that find the right one.
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  So tips speech therapy. It helps.
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  It helps especially programs like SVSLSVT loud practice
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  speaking slowly and clearly. I'm going to I need to take my
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  own lesson here, right? And don't be afraid to laugh
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  when it comes out wrong. It's better than just getting
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  embarrassed. OK, so let's hear it in the
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  comments. What's the funniest word mix up
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  you've had? Share it so we can all get a
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  laugh. OK, moving along.
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  This one's powerful. Now, this was Christine Miller,
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  2238. Who wrote this?
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  I had random pains. Diagnosed as a fibromyalgia,
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  Right? And I can't help but wonder if
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  it was really Parkinson's. Well, Christine, thank you for
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  that. That's such a real question.
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  Like pain can show up years before diagnosis and sometimes
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  it gets mislabeled as something else.
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  I had shoulder pain that I thought was a pulled muscle.
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  Looking back, maybe it was even early Parkinson's sign.
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  There is a test for that though, and you can get it done.
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  It's one of the things that they they actually ruled out
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  fibromyalgia from me by taking what I call the shock test.
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  It's not a fun test, but there is a test that you can get, you
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  can get and you can check it out.
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  OK. And and tips like just don't.
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  Here's a tip for this one. Don't settle for it's just this.
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  If it doesn't feel right, keep a symptom diary, push for answers.
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  And if you're still in that wandering wondering phase, drop
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  still wondering in the comments if you have something that
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  you're not sure if it's Parkinson's or something else.
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  The bottom line on this one, though, is talk to your doctor
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  if there's a test that they can do to see if they can rule
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  something out. That way you can get the best
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  treatment for what it really is because if it's not due with
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  your Parkinson's, then maybe there is something else you can
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  do, whether it be physical therapy or some other type of
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  medication that can help with that.
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  Make sure you talk to your doctor.
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  And if you didn't already and you're wondering if you have
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  fibromyalgia, ask for the test. There is one.
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  All right, here's another pain related question.
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  This one came from Southwest Rush Gary.
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  So like Southwest Rush Gary, who wrote weird pain in my palms and
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  thighs plus Tremors and cog Wheeling, but no diagnosis yet.
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  What do you think? Well, Gary, thank you for
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  trusting me with this. Now, I can't diagnose, but
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  here's what I can say. Unusual pain plus tremors and
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  cog Wheeling is worth getting checked by a movement or
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  disorder specialist. It really is.
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  Here's my tip for you though, Write it down.
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  Patterns matter. When it started, when it
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  started, what triggered it, what makes it better and what makes
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  it worse. That helps doctors piece it
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  together. And Gary, I hope you push, keep
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  pushing for those answers. And if you've ever been stuck in
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  that, is this Parkinson's or not stage in the comments, How about
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  waiting? Waiting.
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  OK, here's the surprising one from at Hogan K9 B, who asked
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  this Haven't you become extra sensitive to smells again?
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  Now most people lose their smell, right?
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  Their sense of smell with Parkinson's.
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  Me, I've never lost mine yet. And sometimes it feels stronger.
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  You know, there are days when Carmen's perfume hits me like a
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  freight train. I love it.
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  But wow. And and I've walked into a room
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  and said, like, what smells funny when no one else even
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  notices? Here's some tips.
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  Pay attention to changes in your senses.
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  They can be early clues and let your doctors know, even if it
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  seems minor. All right, let's vote in the
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  comments type. Lost it if you lost your smell,
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  right, or super nose if it feels stronger.
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  And let's see which champ, which camp wins.
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  OK, lost it if you lost your sense of smell or super nose if
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  it feels stronger. All right, here's the next one.
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  This one is from Kirk Messick 1943, who asked.
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  Pretty severe cramps on my calves, feet, and occasionally
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  my abdomen, most of the time when my legs are elevated.
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  Is anybody else having these? Well, Kirk, simple answer, yes,
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  you're not alone. Cramps and and dystonia are
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  common in Parkinson's. I've had calf cramps at night so
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  bad that I thought I tore something.
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  Carmen once found me halfway out of bed clutching my leg like I'd
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  just run a marathon. So it's very, very common.
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  Here's some tips to, to, to battle it.
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  Stay hydrated, stretch before bed, try magnesium, the spray,
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  if your doctor's OK with it. And, and most of them are, and
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  there's nothing wrong with it. And talk to your neurologist.
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  Here we go about whether medication timing can play a
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  role. So very, very common, Kirk.
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  And if you've had those middle of night cramps comment, Ouch,
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  let's build a wall of vouchers together and then Kurt will know
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  that he's not alone in that feeling.
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  OK, here's our last one for September.
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  And this one is from there at Sue Lee, 63 O four, who asked,
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  Partner has Parkinson's. So much sleeping.
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  Is it the pills? OK, Sue, thank you for asking
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  this and thank you for caring enough to ask.
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  Sleep changes are very common in Parkinson's.
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  And yes, some medications do make it worse.
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  I've I've dozed off sitting straight up on the couch.
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  And Carmen has photographic evidence unfortunately.
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  So some of the things you can do is keep track of your sleep
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  patterns. If it's constant and extreme,
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  talk to your doctor and sometimes a Med adjustment will
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  just help. That and for care partners, give
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  yourself grace. It's hard when your partner
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  seems like they're always sleeping and so you just have to
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  find give yourself grace and give them grace.
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  And here's my ask if you're a care partner watching type care
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  partner in the comments. Let's recognize you because you
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  play such an important role and you deserve a great big thank
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  you for that. You see what I mean?
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  These questions are gold. They prove that we're all just
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  trying to figure this out all together as we go.
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  You know what I do have? I do have a price system for you
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  on this one. With Parkinson's, the questions
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  never stop, but neither do the answers.
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  Not if we just keep talking about them together.
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  There you go. Now it's your turn.
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  Which of these 10 questions hits home for you?
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  And what do you want answered in October's Q&A?
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  Drop it in the comments. You never know, I might be
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  reading your name out loud next month.
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  All right, hit subscribe if you haven't already, because this is
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  just the beginning. And if you're ready to go
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  deeper, check out the inner circle, the links in the
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  description below. And that's where we share our
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  winds or wobbles and everything in between.
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  And until next time, You keep showing up, you keep being real,
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  and you keep doing life today.