Finally, an Update After Two Years of No Changes to My Condition

 

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.   For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

You haven't heard from me since June of 2018.  One reason being that I had no assurance that any, but a few of you, were reading it and, further, see my note about that below.  (Previous posts are listed from the bottom up to the right.  When you click on a date, you must scroll down to read the first one in date order.) 

"Fiona Flamingo" is the logo for Vestibular Disorder Association "VEDA".  

I have not blogged for a couple years because there was nothing new to say.  My balance had improved a bit due to lack of stress and walking with friends a lot for balance exercise.  However, during this COVID pandemic and general election issues, 2020 has been a stressful year.  

I have moved into an Atria Senior Independent Living apartment where they take such good care of us but my allergy congestion due to our lack of humidity in Tucson has worsened and caused restless nights of little sleep which worsens my balance and, I spent July 4th weekend in the hospital due to a fall and gash in my head.  I have been super wobbly ever since.

Neighbors and staff who see me straining to keep my balance often suggest that I should use a walker.  I have watched neighbors using walkers go up and down over curbs by tilting it ahead of them, then leveling the back wheels on the ground while leaning toward the walker before stepping down while holding onto it.  Tilting would make me fall and flip the walker.  I am able to walk slowly and carefully without any walker or cane which would just fall with me and my most difficult steps are over curbs or on ramps/slopes with no hand rails.  I manage to take those steps like a tight-rope walker with my arms out and deep concentration.

A United Healthcare House Call nurse practitioner wrote a note for my Primary Care Physician that I need a sturdy walker.  When I saw my PCP, I told him about my watching neighbors and that VEDA recommends walking sticks that I plan to order.  Another reason for not wanting a sturdy walker is that my patio is so crowded that I would have to leave it by the entry gate and would not have it by my front door to take with me in my car.  I could use it only in/out of the front door but that means longer trips around the neighborhood than if I walked from my patio.

I am still driving but only short distances and in areas that I am familiar with because my oscillopsia makes it difficult to read street signs or house numbers.  When I must drive in an unfamiliar area, I go to Google Earth maps to see a 3-D image of my destination so I can envision what the building looks like and where the entrance and parking is and use my iPad GPS so that Siri can yell at me when to turn, etc.

FRIENDS WHO CARE

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.   For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

You haven't heard from me since August of 2017.  One reason being that I had no assurance that any, but a few of you, were reading it.  (Previous posts are listed from the bottom up to the right.  When you click on a date, you must scroll down to read the first one in date order.) 


Because I expressed to a friend my feelings of no longer having a purpose in life, he suggested that I start writing again as expressing my feelings in writing has always been cathartic for me.  My argument to him was that he seemed to be the only one who cares.  Not one family member has ever commented on my blog posts nor questioned why I've stopped, and only my cousin's dear wife has ever asked for an update.

Lack of purpose in my life stems from my closest family members never reaching out to me and my inability to continue working or volunteering  as a literacy tutor since their new office is too distant and my driving ability and reliability has diminished.

I have often said that I can accomplish only one thing a day.  If I attend a Silver Sneakers Fitness Class or go grocery shopping, for instance,  I then collapse on the couch or pick up a book and relax in my swivel rocker and just fret over the things that need to get done.

Imagine spending every moment of every day like a little kid who spun around to purposely make himself dizzy.  It is exhausting.  You may have read previously in this blog what I learned in my vestibular therapy sessions.  I must move my eyes before I move my head, so a 360-turn requires several steps instead of a normal smooth about-face. I fell recently for the first time due to my balance impairment.  I had allowed myself to get over-tired and was seated with my back to the room messing with my electronics.  I arose and turned to face the room, apparently forgetting that I can't move normally, and the 360-turn without mindfulness caused me to go down.  No injuries except for pain in my bad knee and some bruises.

Regarding the need for "Friends Who Care:"

• I recently had all my 33-year-old windows replaced with energy-efficient ones.  I didn't notice when I signed the contract that the contractor does not paint any added or replaced trim pieces or repaint any areas that they scuffed during installation so that still remains to be accomplished.  Friends helped me remove and replace my window treatments and that must be done again in order to paint.  Missing that in the contract is but one example of the cognitive issues that I've been having lately.  I cause myself more work and stress by the mistakes that I make.

• I'm still doing all my own housework, but will need some help with things like closet cleaning.  I have plexiglass shelving in glass-front kitchen cabinets.  I can't get up and down off a step stool to remove and replace everything for cleaning.  And, with my poor balance and bad knee and hips, it is difficult for me to get up and down off the floor to clean the base cabinets.  I also want to get rid of some stuff in closets and drawers by tossing, donating, or selling but, again, can't do it all alone.  I've been trying to think ahead so that my sons won't have to deal with it when I'm gone.

My healthcare plan has a great program where they actually pay you with a gift card for making an appointment for a House Call by a nurse practitioner.  I had my house call visit yesterday.  She spent 2.5 hours with me!  How often do you get that kind of attention from your PCP?  We discussed all my meds and specialists and how my meds affect me.  We also discussed my mental well-being.  She believes that I am depressed and should have a psychological evaluation and perhaps get some meds for that.  I told her that I thought, rather than clinical, it was situational depression; grief over the loss, due to my balance impairment, of the person I once was.   She said that, because it is a situation that I can't fix and has lasted a long time, it has become clinical.  That statement and her statement as she was leaving "You are not disabled; you look great" made me feel that, because  she hadn't given me the chance to fully explain my disability and what it has done to me, she really didn't understand.  Earlier in our discussion she commented that there are a lot of people much more disabled than I.  Of course, I understand that, but it doesn't help and the statement was demeaning.

On a positive note, the same dear friend who suggested I return to writing gave me a FitBit tracking watch for my birthday.  It nudges me to get up and move every hour.  Because the temps in Tucson have been in triple digits, outdoor walking is not currently an option.  The same friend had given me a flash drive with Hip-Hop some time ago.  I've been dancing around the house...more like rhythmic walking...for exercise.  I turn the TV volume off when watching sports and dance in front of the TV.
"🎶 Get up offa that thing...🎶"

"Keep Going. You Got This."

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.   For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

You haven't heard from me since June of 2016.  (Previous posts are listed from the bottom up to the right.  When you click on a date, you must scroll down to read the first one in date order.)   Due to recent circumstances I have reconsidered my statement early in this blog that I believed the bilateral balance impairment was worse than the bilateral hearing impairment because there is technology to assist with hearing.

If you've followed this from the onset, you know that I went from one all-in-the-ear aid to one in each ear to replacing one with a cochlear implant after sudden hearing and balance losses within a three year period and rapid degradation of my cochlea.  The technology is wonderful but technology often fails.  Currently, my one remaining all-in-the-ear aid is once again dead and out of warranty.  Because of the expense, I have put off investing in new technology that was released in October for a device that is compatible with my C.I.  Now, I must take the plunge. (See update below.)

By "compatible," I mean that I will be able to stream via bluetooth with both so that I can hear in stereo.  The C.I. has the ability to tune out background noise for better hearing in a crowded restaurant or party, etc., but a regular hearing aid worn in the other ear does not, making that function on the C.I. irrelevant.  With the new compatible hearing aid, I will be able to tune out background noise on both. I'm excited and anxious but must wait for my audiologist appointment in a couple weeks to place the order.  (See update below.)

Also, due to illness this Fall and inability to do my fitness classes and fitness walks on a regular basis, I have had a setback in my balance.  I had trained my brain to compensate for the loss of the normal neuro-paths from my feet and eyes to my balance center.  Without practice, it has forgotten it's training.  I am back to square one with my therapy.

As I've mentioned many times in past blog posts, mine is an invisible illness that is difficult for others to understand.  It has robbed me of my independence, caused me to leave a job that I loved mainly due to chronic fatigue and inability to drive distances or in unfamiliar areas, or after dark, and, thus destroyed my self-confidence.  Thankfully, I have loving friends and a few family members who try to understand and assist.  Sadly, others seem to have forgotten that I exist or, perhaps, I am too much trouble for them.

It has been suggested that I need to ask for what I need.  Constant requests makes one feel "needy" and can be embarrassing/demeaning.  Foremost, I need you to remember me; that I am housebound from dusk to dawn; to offer to pick me up to go with you.  I've missed so many street fairs, concerts, plays, flea markets, events, especially around the holidays, that I used to attend alone or with others and can no longer attend alone.  I need you to understand if I must decline due to fatigue but please don't give up on me.

😊😊😊

I wrote and never published the above earlier this year.  Meanwhile, I invested in the Phonak Link hearing aid for my non-implanted ear and love it!  With the remote control which hangs around my neck I can control the settings for both ears at the same time and answer my cell phone with the touch of a button on the remote.  The phone doesn't even need to be at hand, so long as it is in bluetooth range.  In some ways it is even better than talking face-to-face because your voice is actually right in my ears...BOTH ears!  I can also stream music with bluetooth or a cable through the remote, adjust the volume, and hear it clearly in both ears.

On the downside, my balance has not improved.  Since the illness that kept me off my feet last Fall, I haven't gotten back to my Silver Sneakers classes, or daily walks.  I know that I must do that as I was cautioned early on to never stop moving; that my brain must exercise what it has been taught.  My exercise buddy is back from her many summer excursions and will be my "cheerleader" to encourage me to join her in class.  Her motivation is important.  The class is not only beneficial physically, but psychologically.  Without my friends, I go weeks without any human contact other than grocery clerks, repairmen, doctors, etc.  

Progress Since March 2015.

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.   For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

It has been over a year since I wrote my last blog post.  (Previous posts are listed from the bottom up to the right.  When you click on a date, you must scroll down to read the first one in date order.)   I have just continued to adapt the best that I can and maintained the status quo.  Recently, however, thanks to clean eating and natural herbal teas and supplements, I have gradually lost some weight and gained energy.

For the first time since this "thing" took over my life, I felt well enough and brave enough to take a trip  by myself to attend my grandson's wedding.

Because I am an airline retiree, I have standby benefits but, due to the unpredictability of standby travel, I chose to buy a ticket and, to avoid connecting in the bustle of a large airport, I took a shuttle service to an airport 2 hours away so that I could fly non-stop.  I also applied, interviewed and paid to receive a TSA Trusted Traveler number to make going through airport security easier with "PreCheck."

I had a few set-backs to my plans.  Knowing my airline has curbside baggage check, I was hopeful to avoid lines at the inside counter.  The shuttle driver dropped me along with others at a location in front of another carrier in the same terminal with no curbside bag check and a long hike indoors to my carrier's desk.  Then, another long walk to the security checkpoint and another long walk to the gate.  Exhausted, I sat at my gate with a cup of Starbuck's tea and relaxed a bit before boarding.

On the drive to the wedding, I was attacked by an allergy and my eye began to burn and tear.  After the ceremony, I went to the ladies' room and flushed my eye for a bit of relief.  After using all my hanky packs and all the tissues in my son's father-in-law's pocket, a storm rolled in and I felt good again.

I left the reception with my son's in-laws earlier than my son and daughter-in-law who stayed behind to help clean up.  While my son's mother-in-law opened the door at the bottom of the sloping lawn and driveway, she asked the little flower girl who was with us to hold my hand and guide me because "...she can't see."  This really brought to mind the lack of understanding that others have about what has happened to me.  Because "something" has wiped out the pathway from my feet, ears, and eyes to the balance center of my brain and taken most of my hearing with it, as I've said before early in this blog, I have lost the 3 things that the good Lord gave us to keep us upright on this spinning orb.  Through vestibular therapy, I have learned to use my eyes "abnormally" to adapt.  Most of the time, I am able to do that so imperceptibly that others really aren't aware.  Unfortunately, that doesn't work in the dark.  I must focus on a point ahead and carefully move toward it.  I must take a beat to concentrate before stepping over a curb.  I must move my eyes to look before I turn so as not to lose my balance.  When it is dark, there is nothing to focus on and nothing to see when I move my eyes.  What I need in the dark is a strong support, not a "guide-dog," or I feel like I'm about to fall off a cliff in any direction that I attempt to move.  I stood wobbly at the top of the drive (on the edge of a cliff) and waited until she got the door unlocked and the dim exterior light turned on, then I baby-stepped down the hill, thanking my little escort for her assistance.

Returning home, TSA PreCheck did me no good.  Although I had paid for the Trusted Traveler number and had "PreCheck" on my boarding pass, the small airport had only one X-ray machine and it is not at the PreCheck line.  Because I have a cochlear implant, other small stations without an x-ray have wanded me and patted me down rather than put me through the metal detector.  In this case, they made me go to the non-PreCheck line so that I could go through the x-ray rather than the metal-detector.  Luckily, although at this airport the security checkpoint handles all airline passengers, the line was not horribly long, but I felt that I had thrown away the money that I paid for the Trusted Traveler number and I was exhausted by the time I reached my gate.

Once I reached my destination airport, I followed the instructions on my shuttle confirmation to go to baggage claim, locate the shuttle counter and check-in.  I rushed from one end of the bag claim area to the other and when I reached the disheveled unsmiling young woman in front of the desk she said she couldn't check me in until I retrieved my bag.  I told her of my panic that, since the bags weren't up yet, they would leave without me and she just shrugged.  I rushed back to the other end of the bag claim area again, waited and retrieved my bag, made a necessary stop at the ladies' room though I was still panicky about time.  I did not take the time to buy a bottle of water so that I could rush on to the shuttle area.  The driver was 15 minutes late!  At least, I had time to relax for a few minutes before we boarded the van.  Triple-digit temps in the area and the driver did not offer us any water for our 2-hour drive as the driver on the earlier shuttle had.

I drove home exhausted, wobbly, and not very mindful of my driving but made it safely and collapsed for the night.  Will I attempt to travel alone again?  Probably.  I don't believe any of that would have been any different if I had a companion with me and it made me feel that I have regained a bit of independence.

Grateful for the Understanding and Motivation of Friends

If you have kept up with my posts, you are aware that I had a cochlear device implanted in November and was initially happy with my hearing improvement.  (If you have not, the archives are listed at the right and, in order to read from beginning to end in date order, you must read from the bottom up.  If you click on "2013,"for instance, you must scroll to the bottom to read "How It All Began.")  While I may still see continued improvement as my brain becomes more and more accustomed to hearing through a mechanical device, I am very pleased that this technology has given me back some of my life.

A dear friend whom I hadn't seen in many years noticed my guitar sitting in a corner and commented that I had never played for him.  The guitar sat in its case hidden under a bed until Christmas 2014 when I retrieved it so that my grandson could tune it for me because I was ready to attempt, with my new hearing device, to play again though I knew the tones that I would hear would not be accurate.  That didn't happen so the guitar just sat until a few days ago.  If you play, you know that it can take some time to train the muscles in your hand in order to finger the frets properly and to build calluses so that the strings don't cut up your fingers. With an electronic tuner that "hears" the strings for me and has indicator lights to tell me if it is sharp, flat or just right, I have tuned my old guitar and have begun to practice so that I might eventually be able to play for him.

With my new device, I attended several holiday get-togethers and monthly luncheons with past co-workers and am delighted that I was actually able to carry on conversations with those old friends whom I hold so dear.   Certainly not perfect hearing in noisy settings, but so much better.

There has been no improvement in my balance, nor did I expect there to be.  I still have bad days and better days and still find that avoiding stress, getting plenty of rest,  managing my diet, and keeping up with my exercise program are vital.  With the motivation of my friends, I still do 2 or 3 Silver Sneakers classes and a Yin and Gentle Yoga class most weeks and have just added, at least temporarily, a Tai-Chi class.  I have recently re-connected with a co-worker who lives nearby and wants to begin a walking program with me.  Meanwhile, another friend, who is not so nearby, and I are attempting to find a mutually agreeable place to renew our walking program together.

In some of my much earlier posts, I discussed with you the cognitive lapses inherent in vestibular disorders and my thankfulness that I am able to laugh at myself.  A friend who has been around me more than most since the onset of this "thing" and is completely understanding and non-judgmental was visiting and while chatting and watching me prepare a cup of tea for her, she said to me "Did you just put that teabag in your coffee?"  Indeed, I had.


Over a year ago, in my November 2013 post, I talked about my new resolve to be fit and healthy.  "In 5 years, I will be the most fit, vital, active 75-year-old you have ever known."  With the re-appearance of a long-lost friend and a wellness challenge we have given each other, I have new motivation; new resolve.

With motivation from the writings of my friend Dr. Robert Mauer and of Dr. Wayne Dyer,  and my sweet Yoga instructor, I have developed a daily affirmation that I recite with my morning yoga practice and, often, when I am feeling stressed or unable to sleep.  The premise is that "I am..." statements are powerful in training your mind to manifest positive outcomes:  "I recognize that I AM an immortal soul in temporary human form, placed here for a reason.  As such, I AM creative, I AM kind, I AM loving, I AM beautiful, I have expansiveness in abundance and I AM receptive to all that I need to fulfill my intention.  I AM willing, I AM determined, I AM fearless in that pursuit.  I intend to be fit, healthy, attractive that I might inspire others to recognize their connection to this magnificent universe and to pursue their intention.  I intend to rid my beautiful body of imbalance.  I intend to rid my beautiful body of unhealthy weight.  I intend to rid my beautiful mind of negative thoughts.  Namaste."

The Struggle is Part of the Story

You haven't heard from me for a while because I've been busy.  If you are a Facebook friend, you know that my cochlear device was implanted on November 4.  It will be activated on November 19.  The surgery went well but I was kept overnight in the hospital for nausea control.  My son came from out of town to care for me for the week.  I have arranged for friends and a handi-cap van service to take me to my many follow-up appointments and other long-distance appointments for I have decided that it is unwise for me to drive very far or in heavy traffic due to the enormous concentration required with hearing loss and the spacial disorientation that comes with bilateral vestibulopathy. 

As I mentioned in my last post, my hope is that the cochlear implant device will help to alleviate fear and confusion is crowds.  A good example of confusion caused by my hearing impairment occurred at my Silver Sneakers Class.  The class was paused near the end and the instructor handed her microphone to a participant.  I heard and understood the words "Mary" and "died" and thought that it was an announcement about another participant's death, but why were they laughing?   Beyond the noisy environment after class, my friend told me that it was a joke:  "An elderly gentleman told his wife that, when he dies, she is to get rid of everything he owns; that when she remarries he doesn't want some A--hole using anything that was his.  Her response was '.What makes you think I'm going to marry another A--hole when you die.' "  Not much of a joke third-hand, but my confusion gave us a good laugh.

My device is actually two complete kits; one for every day and one for activities such as aqua-aerobics which I had given up because I could not hear the instructor without my hearing aids and could not wear my aids in the water.  This new device is submersible!  YAY!  I am excited to finally get it activated.  I'll post again soon to let you know how happy I am with it.

I'm too hard on myself.  I'm tired being tired.  I still expect to be able to do everything and, when I can't, I am disappointed and despondent.  On the other hand, when I DO accomplish something on my own, it is cause to rejoice.  Yes, the struggle IS part of the story and it will have a happy ending.

Decisions, Decisions, Decisions!!!

In case you missed my Facebook post, here is Dr. Bilgrei's very understanding and informative article about the cognitive and psychological aspects of vestibular disorders:

http://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf

She confirms many of the issues that I have discerned on my own and mentioned in previous blog posts.  I have also developed her coping strategies. (Except "listening instead of reading" due to the double whammy...my hearing impairment.)

In a previous post, I told you that, after three tests, I finally qualified by Medicare/FDA standards for cochlear implants but chose to not go through with it because, for the first time, I was told by the audiologist that the procedure could cause worsening balance.  I've changed my mind.  At a recent appointment with my Neurotologist/Implant Surgeon, he pointed out that balance function is seldom even checked in implant recipients because it isn't usually an issue and that I have so little vestibular function that any further loss would hardly be noticeable, if at all.

I have asked the question "how many holes can one have in one's head?" in regard to a new study of vestibular implants.  In other words, can I have an implant to improve my balance as well as an implant to improve my hearing?  My Neurotologist said that he doesn't know; that no one is yet walking around with those things; that they are in the beginning stages of the study as cochlear implants were decades ago.  He pointed out that of my two problems nothing can currently be done for my lack of balance, but that implanting a cochlear device to improve my hearing CAN be done, NOW.  Because Medicare will cover it since I understand less than 30% of what I hear in each ear, he called it "a $50,000 gift from society."

I have pondered the pros and cons and asked opinions of close family and friends.  We agree with the doctor that the cons seem to be minimal. A hearing aid in the right ear does little to improve my hearing and aids do not compensate for cochlear loss.   On the pro side, while a cochlear implant will not restore my independence, it will make my dependence a lot less confusing and frightening.

A couple recent examples of fright and confusion due to my hearing impairment:

At the airport, after checking our bags and heading for the gate, we were turned around at security by an agent and sent elsewhere.  We were running late (due to my cognitive and disorganization problem and inability to rush) which made me anxious and, because no one spoke directly to me, I had no clue what was happening which made me even more anxious.

On the return trip, at our connecting point, weather disrupted service and the airport was filled with thousands of stranded passengers including us.  Being jostled around in crowds is a nightmare for one with a balance disorder and even more frightening and confusing when you can't hear.  I was momentarily left alone in the departure lounge when, after an announcement that I couldn't understand, people began to move about.  I asked the woman next to me what the announcement had been as she was rushing out of the area and I could not understand her response.  I checked my smartphone app and learned that there had been a gate change, but I couldn't leave the area without the rest of my party.  When they returned, we rushed to the new gate, weren't boarded and had to return to the gate we had just left to wait for the next flight.

We weren't boarded on the next flight and had to overnight at an airport hotel.  With so many stranded, my son was lucky to find a single room for us with two beds.  Once at the hotel desk, I whipped out my credit card to pay for our room.  Meanwhile, my son was right next to me in conversation with another front desk employee.  I thought he was just signing us up for the morning shuttle and was thoroughly confused when they handed him back his credit card and a room key.  Again, because they weren't speaking directly to me, I had no idea that a 2nd room had been found.

Friends have kindly told me that they want to help but that I must tell them what I need.  I have been negligent in that and have since spoken to my son and grandson and told them that, in situations like that at the airport, I need one of them to stay with me and, in situations like that at the security check point and at the hotel, I need to be spoken to face-to-face, "Mom, this is what is happening..."

Despite the problems, I love my one-on-one time with my son and grandson.  My son has always been able to make me laugh, sometimes at the most inappropriate times and places, and my grandson is very sweet and attentive.

We ended up renting a car and my son drove the remainder of our trip to get us home that evening.  I was able to just lounge in the back seat while he did all the work.

I've notified my Neurotologist's office of my decision and am awaiting word from his assistant as to when my implant surgery will be scheduled.  He is booking about 2 months out, so it will most likely be mid-October.

Now, I must decide which of the 3 major implant brands have the best functions for me. The technology is quite amazing.  Stay tuned...

AAA = Acknowledge. Accept. Adapt

“The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because they experienced that thing too, cannot be overestimated.” ― Cheryl Strayed, Tiny Beautiful Things

Unfortunately, the opposite is just as true.  I discussed in an earlier post the frustration experienced when an individual makes a well-meaning attempt to sympathize by saying something like "Oh, I have those little dizzy spells, too" or "I have a friend who had the same thing and saw a doctor.  He's fine now."  Please understand that there are many types and levels of severity of balance disorder and, while I am pleased that some may be able to get relief, it is not always that simple and such statements tend to trivialize the problem. Some of us must acknowledge, accept and adapt to our tilted world for the rest of our lives.

I am making progress in that endeavor.  I gave in and got a Handicap Placard so that I can park close and not have to try to dodge drivers while toddling through parking lots.  I have mostly given up grocery shopping and have begun to order online for delivery.  

My patio has been re-landscaped for ease of care to accommodate my lack of balance. 

I have come to the realization that I do well with routine.  When my natural thought processes are interrupted I become even more imbalanced and confused.  For instance, I awoke early one morning to find my friends on my patio to install my drip system.  With the water shut off and my routine disrupted, I couldn't think how to make coffee even though I had bottled water.  Once I remembered the bottled water, I nearly forgot to put the carafe back in place.  Thankfully, I caught it before I had a mess.

Driving to a business about 2 blocks from home,  my routine route was disrupted by construction at the intersection and, reading the sign that stated "Left lane must turn left", I stayed left to go straight through believing it to be right.  Not bad enough that I did it once, I didn't realize what I had done and thought that I was the only one who got it correct until I did it again on the way back.  I actually did the smack to the forehead "Duh" thing.

I have acknowledged and accepted that I can no longer drive in unfamiliar areas, after dark, when I'm tired, or with another person in the vehicle as I cannot be distracted in the least.  Consequently, I drive very little.  I do just fine so long as there are no detours on my route.

For those who may have wondered about any progress with the University of Washington trials of vestibular implants.  My attempts to become a candidate are ongoing.  It seems that both my doctors at University of Arizona Medical and the one in charge of the trials at UW have inept administrative assistants and letters, faxes, calls are not acknowledged.  An audiologist at UA was to follow up for me over a month ago and get back to me and has not.  I will see my UA doctor to discuss with him face-to-face in two weeks.

A couple odd, interesting challenges that happen to one who has suddenly lost word/sound recognition:  

I heard a beep that sounded like a truck backing up but not as rapid.  I walked my entire house and even stepped outdoors front and back searching for the source.  Because the volume never changed and the beep never stopped, I finally suspected a problem with my hearing aids.  With one out, the beeping stopped entirely.  I changed the wax guard and the battery, replaced it and there has been no mysterious beep in my head since. 

When I put my hearing aids in one morning, I heard a mechanical whir.  Believing that my old ceiling fan might need some attention, I turned it off.  The whirring continued.  I opened my balcony door to see if it was coming from outdoors.  It was not.  I walked across the room and realized that I had failed to turn off my new-to-me humidifier.  I have used it several nights but, because I had turned it on after my aids were out at night and had been turning it off before I inserted the aids the next morning, I had no idea it made such a noise.  I wouldn't be able to sleep with it running if I weren't nearly deaf.  A blessing in disguise!

I borrowed the title of this post from a comment on FaceBook by a fellow member of VEDA.  I still mourn the loss of my energetic, independent self and the demise of fun future plans, but little by little I am learning to  AAA = Acknowledge. Accept. Adapt

Things I Wish You Knew.

This author speaks so well for me:  https://vestibular.org/news/05-15-2014/3-things-chronically-ill-wish-their-loved-ones-knew.

"1. The grief we feel over the life we’ve lost may re-emerge now and then…indefinitely.
2. We can feel as if we’re letting you down even though you’ve repeatedly told us that we’re not.
3. Being chronically ill can be embarrassing."

She elaborates in explanation of each one of these revelations and calls this a chronic illness.  I had never thought of it in those terms, but, indeed, that is true. I am chronically struggling to balance in my slanted teeter-totter world and to hear precious voices, music, sounds of nature, sounds to alert me to danger.  I am chronically stressed and exhausted from the effort.  Yes, it is a chronic illness.  

My yoga class has taught me so much.   For instance, this morning, while preparing my simple breakfast, I noticed that my jaw was clenched.  I had not realized that there was so much effort involved in just moving about my kitchen.  I stopped and took a few deep yoga breaths, relaxed my jaw and lowered my shoulders before I continued what should have been a simple chore.

Those of you who have kept up with my blog from the beginning know that I have been tested twice for cochlear implants and, by FDA/Medicare standards, I have not qualified.  A new audiogram and VNG (balance test) indicate that I have lost slightly more hearing and balance on the right.  I now qualify for the implants, but I am told that there is a chance that the procedure might adversely affect balance.  As I am nearly equally imbalanced left and right side, I have chosen to not take the chance of disturbing one or the other.  I am still hoping to be selected to participate in a University of Washington study of vestibular implants though I've heard nothing in response to my application.

To my grandchildren, I am sorry that I cannot be the fun, active, energetic grandmother that I want to be.

To my friends, I am sorry when I must tell you "No, I'm just too tired." or "No, I can't drive there." or "No, I won't enjoy it because I don't hear well enough."

To my children, I am sorry that I have become needy and no longer independent.  I need you.  I need to hear your voice, to do little things for me, to know that you care.

NAMASTE.

BE THE BUTTERFLY!

Today is a new day... a new opportunity.   I received a number of responses to my publishing error and have responded to each. Blogging is therapeutic for me.  I tend to write when I am in emotional distress, then polish until I'm feeling and sounding more positive before I ever consider publishing.  My first emotional negative thoughts should never have been passed on.  With all the resultant offers of support,  however, I realize that I am negligent in not asking for what I need.  I also realize that it is not so much that I'm unhappy to not be able to do all the fun things that are happening around town but that I can't do them ALONE and, in many cases, it is unfeasible to try doing them at all.  I am still mourning the loss of my independence and, especially when not feeling well, it turns into loneliness and despair.

I recently watched a PBS presentation by Dr. Wayne Dyer who had impressed me years ago with his book "The Power of Intention".  I adopted his mantra with the belief that we are all part of a divine creation put here for a purpose and therefore  "I am creative, kind, loving, beautiful, expansive, abundant and receptive [to all that I need to fulfill my intention]."  In his latest book he discusses the need to be "willing,  determined, and fearless" in pursuit of your intention.  I have added those three words to my mantra.

 In addition, Dr. Dyer introduced a book called "Goodbye Bumps" which he co-authored with his daughter.  At the age of seven, she had facial warts. Medications and topical treatments had not been effective.  A doctor gave this little girl three choices:  Cut them out, burn them off, or (no doubt with tongue in cheek) she could talk to them and tell them to leave.  She, of course, chose the latter and each night under her covers she was heard telling her "bumps" that she loved them but it was time for them to go away.  They were gone in three days!

Sounds nuts, but I'll try anything.  "Goodbye, Oscy (Oscillopsia) and B.V. (Bilateral Vestibulopathy)."

My yoga instructor asked our class, while preparing for shavasana, to allow our minds to be either the butterfly or the fly.  Consider where a fly lands and lingers.  I choose to be the butterfly.

I'm Okay

My dear friends and family who may have gotten a blog post that I never intended to send.  Instead of "save as draft" I hit "publish" and deleted it immediately so that it isn't showing in my list of posts, but two of you so far have responded and I am embarrassed.  I was just having a bad day, not feeling well due to wind and dust in Tucson, and feeling sorry for myself.  Please don't take it personally and know that I am fine.  This too shall pass.

MY NEW RESOLVE DISSOLVED?

My new resolve dissolved?  Not entirely, but I have made zero progress towards my weight loss goal.  I have been active six mornings each week with fitness walks, yoga and fitness classes.  I am left with so little energy that I can't even think about meal planning and cooking.  Prepared meals and restaurant meals are too high sodium and dinner out would mean driving after dark.  Salads are great but I'm too "lazy" to shop and chop fresh produce.  Consequently, I've been eating a lot of whole grain cereal, unsalted natural peanut butter (on bread or crackers, of course), yogurt, eggs (and toast), fruit and mini-tomatoes.  Not a bad thing, but apparently not enough and too high carb.  Gotta work on that.

I was doing two weekly Silver Sneakers exercise classes and have decided to drop one.  I found myself getting dizzy and nauseous trying to move while watching the instructor move.  The other is not quite so aerobic; not as fast paced, but just as effective if not more so.

My once-weekly yoga class is so-o-o wonderful.  I leave the studio feeling as relaxed as a limp noodle.  I have begun my own practice at home and, though I am not there yet, I hope to work up to a daily routine.







Before my first debilitating episode, I was getting weekly chiropractic adjustments to maintain the alignment of my spine and prevent lower back pain.  I felt great during that period; even getting temporary relief from my mild asthma.  My chiropractor told me that her manipulations open up everything.  My nuclear-physicist son said once about having his first and only chiropractic adjustment, "That's not science."  He obviously didn't enjoy having his neck cracked.  It really does take a lot of faith and trust in your chiropractor to allow him/her to do that.  My chiropractor retired. I saw another for a couple visits and did not have the same trust so never had an adjustment again.  I recently read an article purporting that such manipulations irritate the vestibular nerve and can be the cause of disorders such as mine.  Perhaps I stopped too late.

On the other hand, a professional masseuse manipulates muscles and finds knots and pressure points and, in a gentler and less aggressive way,  achieves even better results.

With a gift certificate from a dear friend, I had the 2nd therapeutic massage of my life a month ago and booked three more.  My massage therapist truly has magic hands that find that tight nerve up the back of my neck and lower my shoulders from their strained tense trying-to-hear-and-balance position.

When Publishers Clearing House knocks at my door, I plan to hire my own personal masseuse and chef.







Upon my neurotolgist's advice, I have begun the process to establish candidacy for a study regarding newly developed vestibular implants; similar to cochlear implants but designed by a University of Washington otolaryngologist to correct balance impairments.  If chosen, it will mean travel back and forth to Seattle.  Wish me luck!

TREES SHOULDN'T JUMP!

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.  I have been too shy to share it with the world and have not actually published it.  However, I think it is time.  The blogs that I have read on the VEDA website seem so professional that I am intimidated fearing that mine will seem extremely amateurish in comparison, but I'm about to take the plunge.  For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

A word of advice when learning of someone's VD (That's Vestibular Disorder…not the other one.  My cousin with MS came up with that little joke and we can't help giggling about it.), please don't say "Oh, yes, I get those little dizzy spells all the time if I stand up too quickly."  What you are doing is trivializing the problem; not empathizing.  Consider what it is like to have those "little dizzy spells" all day, every day, with every little movement you make.

I had been without my left hearing aid for over a month.  It was sent out to be refurbished and got lost.  Turns out it wasn't lost at all, but, because it was purchased in a former surname, the records carried that surname and it ended up on a shelf at my audiologist's office unclaimed.

Because the vestibular system is aided by the ears and I temporarily had only the use of one, I had become increasingly wobbly.  The oscillopsia (everything moves with my every movement) became worse and, on my fitness walk, glancing up at a tree along the path and back down again the tree seemed to jump.  Sidewalks wave up and down in front of me.  My world is a bizarro world!

If you have VD (tee-hee) and haven't gone through Vestibular Therapy, I encourage you to do so and to practice your exercises often.  It is vital, though exhausting and often nauseating.

I sometimes feel that, if I don't push through and do certain things for myself rather than asking for help, I am surrendering to this "thing."  For that reason, I had not considered requesting a handicap placard or plate for my car.  I still drive but only during daylight hours and only in familiar areas.  I have almost been run over a couple times in parking lots recently because I can't move out of the way fast enough.

(Come on!  Move it, Granny!)  I finally "gave in" and ordered a placard to limit that risk.

HAPPY NEW YEAR!

First, a reminder that the original intent of my blog was to educate family and friends so they might have a better understanding of what this "thing" is and, hopefully, how to help me to cope.  If one doesn't know or remember, for instance, that, due to cochlear degradation, I can only understand what is said if you are speaking directly to me in close proximity, both you and I will become extremely frustrated.

An article noted early in this blog, discusses the fear that haunts many vestibular disorder patients that they may be in the early stages of alzheimer's disease or senility because of mental fogginess and embarrassing faux pax.  The consensus is that the balance impairment requires so much concentration that the mind tires easily.

Recently, during my fitness walk, I was rambling on to my friend about something and suddenly said "What the heck am I talking about?"  I realized that what I had said made no sense; that I had confused people and places in my mind sort of like what often happens in a dream.  It was a frightening realization.

I have had moments where I totally miss a common word, as we all do, just as I'm about to speak remaining blocked and unable to get back to the thought at all.

I borrowed a pen at lunch a couple weeks ago and couldn't figure out how to work it.  I stupidly kept twisting and pushing and turning it around until I was told that the cap comes off.  DUH!

I know that I have asked my bachelor grandson on two different recent occasions if he cooks at all.  Much later, I remembered that I had heard his answer before.

I waver between laughing at myself and being frightened to the point of tears.

I had a wonderful, but exhausting, Christmas with family in my home.  As mentioned in previous posts,  the concentration needed to maintain balance and the need to strain to hear zaps my energy.  For that reason, preparing for company for the holidays was a two-week endeavor.

I laughed hysterically when, while making roll dough, I lifted the beaters of my stand mixer slightly out of the bowl while it was still running to fling the dough off.  When that wasn't working, intending to turn it off to lift them entirely, I mistakenly turned it to high and flung bits of dough everywhere…my glasses, the backsplash, the window shade, the floor…

Living alone, one develops routines of daily functioning.  Living alone with a handicap, one adapts the home to those routines.  My furnishings are all strategically placed for watching TV with ease and to eliminate any obstacles that I must step over or around. Lamps are connected to outlets operated by a wall switch so that I don't ever need cross a dark room.  I keep a "grabber" nearby so that I needn't get on a step-stool to get something from an upper cabinet or bend over (which sometimes results in tumbling all the way) to pick up something I've dropped.

Christmas morning was joyful.  I loved spending it with grandchildren; watching them open presents.  Afterward, though, the room was strewn with wrappings, gifts, boxes that would have required balance to step over or around.  They obviously forgot that there was an elderly toddler in the house.  I just sat at my dining room table until the floor was cleared because I feared falling toward the TV on one side or the glass-top coffee table on the other.

Being the last one to bed and turning off lights, I was momentarily trapped in my kitchen.  The living room lamp would not turn on with the wall switch so that I could cross the room and turn it off at another on my way to my bedroom.  It had been turned off by the lamp switch.  Of course, it was a simple remedy.  I simply turned the kitchen light back on to give me enough light to cross the room to the lamp, then back to the kitchen to start over again.  Those who haven't read my blog or been around me often aren't tuned in to my needs.

I spent two days looking for my "grabber" because it had been used, probably to retrieve a Nerf bullet,  and not returned to its usual resting place.  I have a rolling chair at my little kitchen desk.  Without my grabber but with a bit of ingenuity, I rolled myself to the item I had dropped and kicked it near a cabinet so that I could hold on when I bent from chair level to retrieve it.

I'm grateful to my son and grandson who came by NewYear's Day to help me take down and put away the tree and ornaments. It will take another week, at my one-"major"-thing-a-day pace, to replenish groceries, wash linens, etc. and put my house back in order.  But, it was well worth it!

My new resolve went by the wayside over the holidays, but, with the encouragement and companionship of my walking and yoga partners, I am already back on track to make 2014 a year of major accomplishments.

 

NEW RESOLVE

I will begin yoga practice for proper breathing to aid balance.   ✅
(I bought a 10-class Groupon with a friend and have attended several with the plan to do one session each week.)

I will get back to strength training to build my core muscles and those around joints while continuing to walk 4+ miles three times a week with a friend.   ✅
(Did a Silver-Sneakers chair aerobics class and plan to continue and add a Tai-Chi class.)

I will improve my diet to eliminate inflammatory foods and reduce sodium to improve my overall health, energy, and appearance.
(I've read "The Hunter/Farmer Diet Solution" by Dr. Mark Liponis of Canyon Ranch.  I believe in him and will begin to eat according to his recommendations.  As a successful business woman, I know how to create a plan, track the results and tweak it when necessary to reach my goal.  I've done it with less important things in my life, so surely I can manage my weight and health in the same way.)

I will continue to seek solutions to my balance and hearing impairments and ways to adapt to a lack of solutions.

I feel so blessed to not only have so many dear friends but that, among them, I have those who are not only supportive but join me in my efforts.  They are so good for me...body and soul.  🙏😘

This is a recent photo of a high school friend on the left and me on the right taken just a couple days ago when she was passing through on vacation.  Consider this a "before" and watch for the "mid" in January and the "after" before my birthday in May 2014.

In 5 years, I will be the most fit, vital, active 75-year-old you have ever known.

WORKING THROUGH THE "PITY-POOR-ME'S"

I watched DVD's from two different implant companies and cried.  The testimonials showed people idealistically surrounded by family and friends and enjoying life.  In my more realistic frame of mind I questioned "I am not surrounded by family and friends, so why bother?"  (A case of the "Pity-poor-me's.")

I didn't qualify for cochlear implants again anyway.  This time, the phrases were so obscure that I couldn't guess.  The audiologist 6 months ago suggested I had done that too well.  With my left hearing aid only, I tested at around 27% sentence recognition.  With my right hearing aid only, I tested over 40%.  With both, on which the FDA bases qualification, I was at just over 40%...borderline.  I am to be re-tested in another 6 months.  Meanwhile, my name is on a list for a new study of those of us on the fence.  If I qualify for that, I will be notified.  Very frustrating.  I want something that will fix both hearing and balance impairment which doesn't yet exist.  (Notice that I said "yet."  That's positive, right?)

I've been feeling very negative lately about the usefulness of implants in my case because I believe my balance impairment to be more debilitating than my hearing impairment.  I question whether, at the age of 70, I want to have something implanted in my head.  At my age, most have had natural gradual hearing loss and many do nothing about it.  Because I was an active, vital, independent 66-year-old and my loss was sudden, I am extremely aware and am wearing two hearing aids that, according to the FDA, are "good enough."

With cochlear implants, I would be better able to hear in noisy environments and enjoy music again, but unless my family and friends begin to include me to do those things*, to even pay attention to me (I feel very alone in this struggle.), I still will not be able to be out after dark, to navigate the unrailed stairs of a stadium, to walk to my seat in a theater, to walk down an airline jet-bridge alone, to do more than one "major" thing a day.

Don't give up on me here.  I promised myself that my blog would not be just a list of complaints and "pity poor me's,"  though those things are necessary to your understanding.  

I have been educating myself, mainly through the VEDA (Vestibular Disorder Association) Facebook page and website.  A recent article discusses feeling "stuck" and being in the "comparison trap."  I have been there and know that it takes an enormous amount of emotional energy to move on; to stop listing those things that you can no longer do and those things that you will never do again and comparing what you can do today with the past.  http://vestibular.org/news/10-02-2013/chronic-resilience-comparison-trap.  In the article, author Joan Friedlander recognizes the mourning period and suggests that, in time, one must recognize that the past wasn't all that rosy; that it had it's problems, too, and states that one must find the "hero in the story," (self-confidence) and make a plan to move forward.

Through VEDA, I also learned of a study completed by a research team at Johns Hopkins.  Through their research, they have identified the tiny part of the brain responsible for balance and have used some  safe method to throw their healthy test subjects temporarily off balance.  The premise is that the reverse may be true and they may be able to use their findings to cure those of us with balance disabilities.
http://hub.jhu.edu/2013/10/08/dizziness-brain
This is exciting news for me and I plan to write a letter to the leader of that team and offer myself as a "guinea pig" in the research of that premise.

*I am extremely grateful to those precious few who do.

ATTITUDE IS EVERYTHING

Every day is a new adventure; a new opportunity for experience in whatever comes your way.  With the right attitude you can make fun out of anything.  Right.

I needed a major attitude adjustment after my monthly senior-discount day grocery shopping expedition which is always a challenge but, because of the discount and the chance to exert my independence,  I take pride in the accomplishment.  The squeaking carts, music, conversations, conveyor belts, loud-speaker announcements are annoying to some but can be debilitating for a hearing-impaired person.  The aisle upon aisle of shelves and back-forth up-down movement is dizzying and nauseating for a balance impaired person.  The grocery cart gives me some stability.

My usual store has been doing some remodeling and seasonal shifting of goods so things were not in their normal places.  There was a conveyor belt at one of the check stands that squeaked rhythmically loud enough to be heard throughout the store.  It was not so much the squeak itself but the rhythm of the squeak that threw off my balance even more.

Finally, I was done and got in the shortest check-out line.  There was some confusion and delay with the customer ahead of me, but I was unable to hear the cause. With the contents of my cart emptied onto the conveyer, I was told we would have to move to another line because there was a problem with the cash register.  The clerk assisted in reloading the cart and emptying it again.  I carry my own fabric bags including a thermal bag for frozen and/or dairy and conscientiously load the conveyor belt to make it easy to determine what goes in which bag; all frozen together, all dairy together, all canned/boxed together, etc.  She was not so conscientious and frozen ended up in every bag except the thermal one which made sorting through to put away the perishables urgent and much more difficult and time-consuming.


I got my attitude adjustment in the form of back and forth texts and a follow-up phone call from an old high school friend.  He can always make me grin and sometimes blush, even across the miles.  If my family and friends knew how therapeutic their voices are to me, I am sure they would want to wield that power more often.

EXCITED, EXHAUSTED, "LAZY" AND LONELY

I didn't sleep well last night and I don't know why.  Yesterday was a lovely day.

I drove to a restaurant to meet with a dear friend who I had not seen since high school.

The driving route was familiar to me, so no particular stress there.  The restaurant was chosen partly for its quieter patio seating and menu.  The meeting was pleasant and comfortable, so no stress there.  I enjoyed my visit with her and her husband so much that my smile muscles hurt.  I didn't notice until on the drive back home that I was tense across my shoulders, the back of my neck and my face. From past experience, I recognize this as a result of leaning in and straining to hear in a noisy environment or when more than one conversation is going on around me.

I immediately relaxed my shoulders and neck and face muscles and, when I arrived home, I did nothing but relax with a book, my computer and the TV with my favorite sports teams for the rest of the day.  I have learned that the concentration needed to move about without staggering or falling and to hear is so exhausting that one major thing a day is all I can handle.  A simple lunch outing is a major thing when you have a vestibular disorder.

Knowing that I was to meet a friend for our fitness walk early the next morning...another major thing... I contentedly made my way to bed about 9:30-10pm and tossed until after midnight.  I got up and had a cup of chamomile tea while I read a novel.  I texted my friend in the middle of the night that, because I could not walk on just a few hours sleep, I would not be able to meet her.  I went back to bed and found myself still awake an hour later.  I finally fell asleep only to be awakened by a phone call from my friend who had not yet seen my text.  By the time I put a hearing aid in she had left me a message that she was concerned because I was not at the park.  I listened and called her back but I, too, had to leave a message.  I forgot about the hearing aid, laid back down on the opposite ear and the phone rang again.  I groggily answered, explained, laid down again and, just as I was dozing off, rolled over onto the ear with the aid.  It woke me with a squeal.  I gave up and, though I tried to nap,  have been up and zombie-like for the rest of the day.

I have hobbies, housework, things to do, but don't feel like doing a thing.  This is explained by a psychologist who deals with vestibular patients who think themselves to be lazy and have the fear that others think the same of them:  https://vestibular.org/sites/default/files/page_files/It%27s%20All%20in%20your%20Head_Addressing%20Stressors%20%26%20Self%20Doubt.pdf

Of course, it is easier to just be still and alone with quiet around you, but it can also be very lonely.  Blogging about it is helpful.  Thanks for listening.  💕

I'M IN LOVE!

I "liked" the VEDA (Vestibular Disorder Association) page on Facebook and have been "sharing" their posts for Balance Disorder Awareness.  I am disheartened at the relatively few responses and shares that I've gotten from 189 friends including family.  I am extremely grateful for the caring souls who did respond and share and for those who have read my blog.

One friend who read my blog responded by email with the suggestion that I might qualify for a service dog.  I am aware that such hearing/balance service animals are available but dismissed the idea due to the presumed expense and the lack of space in my two-story, two-bedroom town home.

I fell in love with a very loving and well-trained golden retriever when visiting with family on a Pennsylvania farm.   I giggled every time he nudged his big head under my arm to have his ears scratched.  The big lug even stretched himself across my lap when I was on his level sitting on the edge of the porch.  Each time I left the porch to stagger across the field, he rose with me and accompanied me as though he knew I might fall.  

WHEN I get my windfall and can afford a second home there, I will find myself a companion just like "Blue," aka "Cletus."  (Pictured here with my grandson.)

I AM LEARNING

I've heard it said that you are only old when you stop learning.

Most everyone's retirement dreams are to relax and have fun with friends and family and I'm just stuck here by myself.  Yes, I know I  am blessed with many dear friends, but I want to be able to come and go as I please; to be able to say on a whim that I think I'll do this or that or go here or there without having to consult someone else.

If you read the links in my second post, you learned that a part of my vestibular disorder is lack of balance in the dark.  According to my vestibular therapist, that cannot be remedied.  While on a visit with my son and his family, we all piled out of his vehicle in front of his house.  The headlights remained on for a moment, but when they went off, with no porch light to illuminate the way from the driveway to the door, I froze in place.  I felt like I was going to fall off a cliff.  Someone grabbed my arm and another ran inside to turn on the light.  That has happened a couple times so I never venture out after dusk and before dawn without someone to hold onto.

Another aspect of night-time imbalance happens when laying back in bed at night after all the lights have been turned off.  The glow of a night-light is not enough to prevent the feeling of falling back into a hole.  I have a bedside lamp, but just leaning up and back a bit to switch it off has the same result.  A dear friend gave me a remote switch which is on a cord that the lamp cord plugs into.  I drape it over the lamp during the day where it can be turned on upon entering the room and keep it under a pillow next to me at night where it can be turned off once I'm all settled in.   Problem solved...at least when I'm at home.  Someone suggested a "Clapper" which would work as well.

The more that I learn about the disorder, the more questions I have.  For instance, having refused at my doctor's recommendation, the evasive test to hopefully confirm the cause, I now wonder if there is still a neurotoma somewhere that hasn't been detected that may cause more damage.  I must pose that question to my neurotologist when I next meet with him.  Because mine is such a unique case, he cannot tell me with any assurance whether or not cochlear implants to improve word recognition will also improve my balance.   Because the implant actually bypasses the hearing/vestibular system, it is doubtful.