Facial Paralysis Support Group

     This is my new support group that I am starting.  I'll be posting a time and place for April.  If you are interested in joining message me, leave a comment or email me @ JenaeSleight@gmail.com
   

My Facial Therapy

     I've been really busy this past year working on my health.  It's been a very tough journey but I've come a long ways.  I tried a lot of different things and most of them were unsuccessful.  I don't want to bore you with all my failures so I'll tell you about my successes.  Last year I started having Facial Physical Therapy with Janene Holmberg, PT, DPT, NCS.  She is a facial rehabilitation specialist with the Intermountain Hearing & Balance Center located 230 S 500 E Suite 150, SLC 801-595-1700.  My experience with her was AMAZING!  Am I sugar coating it?  Perhaps, but my results speak for themselves.  

     When I first met with her, she did an exam, but it was the oddest exam I've ever had.  She told me to make different faces & she took pictures.  She measured both sides of my face to see what areas I needed to work on the most.  She told me to take a daily multivitamin (after some research I picked New Chapter Women's Daily & my hair & nails grow like crazy!).  She taught me visualization relaxation techniques because I needed to learn to manage my stress & take some down time for myself.  She suggested that I read The Migraine Brain by Carolyn Bernstein because I have way too many migraines per month & see a neurologist for my headaches.  I did go see a neurologist but their answer was to try different drugs, which I did & because of the horrible side effects I quit them ALL.  I am taking a daily low dose Aspirin & it has lowered my migraine threshold enough to give me relief.  Janene suggested that I start exercising 5-7 times per week.  This was particularly hard for me.  I was able to go walking more & more but it didn't really help until I started running, biking & using the elliptical on a very routine basis.  When I exercise, and I mean really exert myself for at least 30 minutes, 4-5 times per week, I feel better than I have in years.  

     Janene explained that when you get Bells Palsy the nerves are actually severed.  They have to re-grow and sometimes synkenesis occurs which means the nerves grow back to the wrong place.  This is why when I smile my eye closes just a little.  Through micro movement exercises, you can re-train your nerves to do what you want them to do.  Janene showed me how to do facial exercises that she catered to my facial needs.  They were difficult to do.  They are ultra tiny movements.  She was always telling me to SLOW DOWN!  Or she told me- TINY!  I thought that physical therapy would last a few weeks and then I would have immediate improvement and be pain free!  That's not how it works.  What you put into it is what you get out of it.  I spent almost a year in therapy with Janene.  Each session lasted for about 2 hours with about 6 weeks in-between our appointments.  The first few months were the hardest because I didn't think I was making any improvements.  My headaches were horrible but Janene was able to explain to me that my facial pain & my migraines were bouncing back & forth off each other triggering one or the other.  

     After a few sessions I got the feel for what I needed to do at home.  I practiced every day, ok, almost everyday ;)  Then I started to see results.  There was a muscle just under my bottom lip that I had completely lost function of.  Through her help, I can use that part of my face again!  My smile became more even.  My eye doesn't close when I talk, smile & laugh as much as it did before.  I can feel when I am making mistakes without looking in mirror & self correct.  

     The most important thing I have learned is that I can't just do one of the things I have talked about to feel better.  It has been a life-style change.  I have to take time for myself and relax.  I have to eat healthy and get adequate rest.  I have to work on my face with my facial exercises.  I have to keep fit by exercising routinely.  What has worked for me might work for you but since every body is different you'll have to find what works for you.  Good Luck! 

    

Tiffany’s Bells Palsy Story

            I have had bells palsy two times in my short 32 years of life.  Right before I turned 20 years old, my mother in law was in town for my sister in laws baby shower, staying with me.  We had a full day of shopping ahead, so I got up early to get ready for the day.  While I was showering, I got shampoo in my eye, which never happens.  I thought I just must be tired.  I finished showering and got out.  While brushing my teeth, everything was flowing out of the left side of my mouth so I looked in the mirror and noticed my left eye was super droopy.  I tried blinking and nothing.  I smiled and no movement.  I starred in the mirror for a few minutes, then went and got my mother in law.  The first thing she said to me was, “what’s wrong with your eye?”  I had no feeling on the left side of my face.  I immediately called my doctor; he had me come in right away.  He knew exactly what it was, but was confused as to why a 19 year old had it.  He prescribed me an antibiotic, a steroid and called me every other day for progress reports.

            The pain was excruciating!  More than I have ever felt.  My ear hurt, my face hurt, my head hurt, and I was miserable.   The head pain was unbearable; I felt like I had been run over by a truck, it was the worst pain I had ever endured.  I had no feeling on the left side of my face and shoulder and it lasted about 8 weeks.  My facial droop lasted about 4 months.

            When I was 10 weeks pregnant with my second baby, at age 27, I felt it coming on.  I knew it was going to happen and I knew there was nothing I could do to stop it.  I was scared, but what scared me the most, was that I knew the pain that was coming.  I called my doctor right away and he again prescribed me an antibiotic in hopes it would help, maybe even shorten it.  It may have, I don’t know, but this time the facial pain only lasted about 6 weeks and the facial droop about 5 months.   It put me out of commission for about 3 weeks.  My mom came every morning.  She got my oldest out of bed, fed her, bathed her, dressed her, played with her, settled her in for a nap and helped with housework.  I was so grateful!  The pain was terrible!  I laid in bed and didn’t move.  I cried a lot.  All the emotions came back from 8 years earlier.  I was miserable.

Almost 5 years later the things I notice that are different are:  

-Memory loss.  I can’t remember much of anything, it’s so hard.  My husband comments all the time about years back and I just can’t remember them, it’s super frustrating!

-I slur my words a lot.  I can’t seem to get the words out.  For someone who was so talkative and quick on the draw, I’m not anymore and the older I get the worse it gets.

-When it’s cold outside my lips freeze and won’t move.  Not just from being cold, but I can’t actually get them to form a word.  It’s hard to explain.

-The ear pain comes and goes, just a little reminder of pain I have tried so hard to forget.

-My eyesight went downhill with each episode of bells palsy.  My eyes tend to get dry easily and they feel goopy and heavy at times.  I know when I’m tired and need to get some shuteye.

-I get a lot of headaches now.  Something that I’m still not used to and hope to never be!  Nothing seems to help them.

-Lastly the steroids from the first bells palsy made me gain weight, somewhere around 50 pounds.  That was probably one of the hardest things for me because I didn’t know the girl in the mirror.  I didn’t like looking at myself.   I worked my butt off for years and finally starting losing the weight with diet management.  One of the hardest things for me was learning to love myself for who I am.  A lot of my strength came through overcoming this trial.

            I’m grateful for my great husband, family and friends that have been there for me.  It’s rough!  It’s something I hope to never have to go through again and I have that same hope for everyone.  I’m stronger from it,  and have learned so much about myself.  I hope to be a strength for others.

Getting Use To Your New Skin…

                Over the last 4 years I’ve become hyper aware of people’s faces.  I notice when people have crooked smiles, or when someone’s eye doesn’t open all the way.  I’m usually too chicken to ask if they had Bell’s Palsy for fear of offending them if they really suffer from something else. 

                I’ve been asked by many people, often, in less than tactful ways, “What’s wrong with your face?”  When a child asks, it’s easy to say that part of my face stopped working and now I have a crooked smile.  Kids accept it and move on.  Adults on the other hand, always have something to say- Can’t they fix it?  ..I just thought you were born that way.  They know someone who knows someone and they got better, so I will too.  I try to remain patient when talking with people about Bell’s Palsy and take it for what it is so I don’t get offended. 

                It was really hard being around people the first month, when my smile didn’t work and my eye was in Crazy mode.  My eye twitched and teared, even though I wasn’t crying.  I mean I did cry a lot, especially when I looked in the mirror.  It’s not like I’m a beauty queen or anything, but looking in the mirror and seeing a whole new me, was scary.  No one wants to look in the mirror and think, Who the *$#@&% (insert word of choice) is that?  I use to avoid smiling all together.  Then I started covering my mouth when I laughed because I knew my mouth looked funny and anytime I smile it pulls my eye into a squint.  Getting used to the new me was going to take some time…

                My face pain eased up and I got about 70-80% of my motor function back.  When I smile with my mouth closed, you probably wouldn’t notice my droop.  When I smile with my teeth showing my smile is crooked and my left eye is squinty.  I’m lucky to have received that much nerve control back.  I’ve met people with Bell’s that never regained any nerve function, although this is very rare.  I’ve also met those who recovered completely within 1 day to 4 weeks.   No matter what stage you’re at you need to find gratitude because there is always someone worse off than you.  Count your blessings and be happy that you still have your arms, your legs, your eye sight, your sense of smell and touch.  I would much rather suffer with this affliction, than have to go through something else. 

                When I’m stressed, tired or just plain worn out, my face droops more.  I only have a very few people acknowledge when my face looks more tired than usual.  I appreciate their concern and that they can recognize how I’m feeling by how my droop looks.  Most people just tell me they don’t even notice the Bell’s at all.  I think they feel uncomfortable and don’t want to offend me.  Maybe they really don’t notice and I’m just too sensitive about it. 

                The first year or two I hated having my picture taken.  I felt like I had to smile even though I looked “special.”  Now I find that when I have my picture taken, I always stand on the right side of the group and angle my body so that the good side of my face is closer to the camera.  This makes it so I end up with a lot more good pictures and often you can’t tell that my face is broken. 

                Awhile after the Bell’s, I got a divorce and realized my fears.  I would have to date, again!  I didn’t feel pretty.  I didn’t know how men would react to my face.  It was scary thinking that I would have to explain what happened and I wasn’t sure if I would be accepted or worse, loved.  I worked on the way I viewed myself first.  I got a haircut with angled bangs that hung over my left eye just a touch.  It hid my squint a bit and made me feel sexy.  Then I paid more attention to details; matching my clothes, wearing jewelry, doing my nails, wearing heels.  There’s a hidden magic when a woman wears heels.  It instantly adds confidence.  I’m not sure why, but that’s a thought for another day. 

                I thought and prayed a lot about who I am and what I believe.  I don’t know what lies ahead for me in my life, but I know who I am, what I believe and my trials have given me compassion for others and their struggles.  If you’re anything like me and feel insecure in your new skin.  You’re not alone.  Love your skin, take care of your body.  Don’t give up on it.  Tomorrow is a new day, you never know what might happen. 

                In-case you were wondering, I did get re-married.  Dating was scary but it didn’t last very long.  Actually, love took me by surprise.  He loves me for the person I am and tells me I’m beautiful all the time.  And most of the time, I believe him :) 

If you would like to share your story, email it to me and I’ll post it!  Send it to- JenaeSleight@gmail.com

My Story...

            I awoke to a crisp September Saturday.   I’d overslept and rushed to get dressed then poured myself a bowl of cereal.  It was too late and the doorbell rang.  It was my friend Bob.  He was here earlier than I’d thought with the concrete truck ready to help us lay concrete on the side of my home.  My now ex-husband, Mike, went out to help while I rushed back to my bowl of cereal knowing that I’d need the sugar boost from my sugar coated cereal if I was to be any help that day.  I lifted the spoon up to my mouth and put the spoonful in my mouth but spilled all over myself.  Frustrated that I really didn’t have time to be a klutz, I grabbed a napkin.  I sat back down and scooped another spoonful to my mouth and it happened again!  I thought it was odd that I was such a ditz but after spilling, I tried again.  After I had cereal fall out of my mouth again, I realized that something was wrong.  I went outside and told Mike that my face wasn’t working.  He told me to call my mom, who’s been a nurse for 20 something years.  I gave her a call at work and explained my predicament.  I went and looked in the mirror and noticed that my smile was broken.  My mother talked to a few of the Doctors in her unit and told me to drive up to the University of Utah Hospital and come to the ER.  The doctors were worried that it was Ramsay Hunt and I would need to be seen right away.   Mike drove me to the hospital and I was in the ER for a few hours being their lab rat.  The U of U is a teaching hospital, so every intern, med student and doctor who had never seen Bell’s Palsy came to look at me.  As they asked me to raise my arms, look at the little light, and stick out my tongue for the 13^th time, I got annoyed and wanted to go home.  They gave me a promising prognosis.  Typically the paralysis would be gone within a few weeks.  They put me on Acyclovir for a week and set up a follow-up appointment with a neurologist the following week. 

                During the next week, my “condition,” for lack of a better word, worsened.  The left side of my face felt like the biggest, strongest man in the world had taken a two by four and smacked it across my face.  The pain was excruciating.  I’ve birthed babies, had my appendix removed because it almost burst, had my fallopian tubes rupture because of tubal pregnancies and all of those things paled in comparison to the pain I felt radiating in my face.  My face was numb, tingly, my eye socket hurt, around my eye hurt, my forehead hurt, and all around my left ear was pain.  It was as if there was a bilateral line drawn down my face so that a mirror of the one half of my face that didn’t hurt, could laugh at the other half that could no longer smile and was in pain. 

                My left eye would not close on its own.  To avoid damaging my eye, I had to use my hand and physically close my eye to try to keep my eyeball moist.  You don’t realize how many times a minute you blink to lubricate your eye until your eye no longer closes on its own.  I used eye drops and ointment to keep it moist.  At night I put on a pirate patch and stuffed gauze inside to fill the gap between the patch and my eye to keep my eye closed and protected.  My son was really into pirates and he loved it.  He thought I was playing dress up with him, until I cried.  Then he’d lay his little 5 year old head on me and tell me that it was ok. 

                My son had just started kindergarten and my daughter was 10 months old.  I couldn’t take care of them.  It was like having the worst migraine you’ve ever had in your face and head, every day.  I had no relief and didn’t know when it would end.  I took a few left over prescription pain pills I had lying around and they didn’t relieve me from any pain and only put me to sleep.  I took more of them with Ibuprofen, Advil, Excedrin, Tylenol and nothing worked.  I couldn’t understand why.  When I told the Doctor at a follow up appointment with tears in my eyes of my pain, he told me bluntly that it was nerve pain and that nothing could be done.  I told him of the shooting pains that had just started going down my left arm and leg.  The Doctor told me that they had nothing to do with my Bells Palsy and he didn’t anticipate needing to see me again, that it should all clear up very soon.  Really?  Thanks for your concern. 

                I didn’t make any effort to see him or any other doctor about it again.  Instead, an acquaintance suggested acupuncture.  I was not someone who believed in any sort of natural medicine but I was desperate.  The acupuncture was amazing!  The needles don’t really hurt going in because they are very tiny.  Every time I had acupuncture my face hurt worse and I got really tired.  I often fell asleep in the car on the way home, I wasn’t driving of course.  But several hours later, I had relief from the pain.  The pain never went away but it was diminished for a few days. 

                I realized that nerve pain is different than our aches and pains we get in our body.  I couldn’t take any medicine to make it better.  I cried a lot.  I prayed a lot.  I used cold packs and hot packs for comfort.   I wasn’t sure how long I could live with the pain. 

                 I was very sensitive to sound.  My magic number on my TV was 11.  If the volume was turned up past 11, it hurt.  It’s still that way when I get really bad headaches and migraines.  The nerve pain and droop lasted about 4 weeks.  It was the worst 4 weeks of my life.  I know that sounds dramatic, but its true.  I had a lot of help those weeks with my kids and I’m very grateful for it. 

                It’s now been four and a half years since I got Bell’s Palsy.  My smile is still crooked and I can always feel that the left side of my face is there.  Most people aren’t aware of their cheekbone or left forehead, but I can always feel mine.  Like a warm, slightly painful glow.  Almost like someone smacked me.

                 I have good days and bad days.  The good days, I’m just aware of my left side of my face.  The bad days, I feel like I’ve been hit with that two by four again, my teeth hurt like I’ve got a mouth full of cavities (of course only on the left side), I have a horrible headache, my eye won’t close all the way when I try to sleep, and sometimes I even have pain under my ear.  I’ve come to realize that my memory has worsened too.  If I have a bad face day, as I call it, aka a bad Bell’s Palsy day, it seems that I have scattered thoughts.  Some may say that’s just because I have kids, but it got a lot worse after the Bell’s.  I forgive very easily because I forget so quickly, and even quicker when I’m tired.  I’ll remember that I’m mad at my husband the next day about something, but I can’t remember what.  Lucky him, I guess.