Getting
sick in Sept. 2011 was not a gradual process for me. I went to bed, and
woke up in the middle of the night to a spinning world. If I didn't
move AT ALL I was fine. I was very sick, and this is what my husband
Ron and daughters Leena and Cara woke up to, when I got up in the
morning. I managed to communicate that I was sick, and went back to
bed.
Before I got sick, I taught private flute lessons, performed in a community band, & got together with fellow flutists just for fun. I still play my flute a little each day. Losing my musical life has been very difficult, very painful. I am working on rebuilding, finding a new path - it is a work in progress.
I
desperately wanted to know, after I got sick, what was wrong with me. Ten
months later, in July of 2012, I finally got my diagnosis of Migraine
Associated Vertigo (MAV), but there was still so much I wanted to know. I
needed to know what I could do to manage my condition so I would feel
better. I wanted some idea of what my life would be like moving
forward.
In the spring of 2013, I saw Dr. Neil Margolis (Developmental Optometrist), and got my vision disorder diagnosis of Convergence Insufficiency (CI). Dr. Margolis and my vision therapist Ann think I probably had an undiagnosed childhood problem, which was dramatically impacted when I got sick - as if I'd had a stroke. I also now have an impaired vestibulo ocular reflex (image stabilization - VOR).
In the
spring of 2012, shortly before my MAV diagnosis, I began (and continue)
Feldenkrais Therapy (FT) for the balance problems caused by vertigo.
In May of 2013, when my CI with impaired VOR was diagnosed, I began Vision Therapy (VT). In January of 2020, Dr. Margolis said I no longer have the CI diagnosis. I still, however, have a vision disorder.
I started working with a psychiatrist, Dr. Mirsky, in Nov. of 2017, and after realizing I'd developed PTSD Anxiety from the night I got sick, I began working with a cognitive behavioral therapy (CBT) specialist in March of 2018.
During the first two years of my illness, I used a voice recognition program called Dragon Naturally Speaking to dictate to my computer. This allowed me to compose e-mails, and do a small amount of writing, mainly about music.
After a year of slowly improving through VT, I was able to use my keyboard again, and to write in more depth about my experiences. I've always loved to write; I've done it off and on since I was a teenager. I'm constantly learning how to cope with my disorders, as well as working hard to make progress.
As recently as October of 2019, I've finally educated myself about irritable bowel syndrome (IBS). I was diagnosed about 2 1/2 years ago by my GI doctor, and told to take the over-the-counter med IBGard. IBS is apparently a fairly common combination with MAV.
I stopped doing Feldenkrais and vision therapy in March of 2020 due to the pandemic. I still touch base on a monthly basis with my cognitive behavioral therapist. I resumed Feldenkrais in the Fall, every other week, via Zoom. I have now, as of June 2021, transitioned to doing it every three weeks for maintenance, and to touch base with questions. I also still talk to my Cognitive Behavioral Therapy specialist once a month.
I saw Dr. Margolis, who said my convergence insufficiency seems to be fixed, since it has not recurred. I still have visual/vestibular integration dysfunction. I also, of course, still have Migraine Associated Vertigo for which my diet is vital.
My friend David Morrill invited me to join the Ambassador (patient advisory) Board Member for the Vestibular Disorder Association, VeDA. David is the Chair of the Ambassadors. I occasionally share posts from the VeDA Facebook page, and help David with his Ambassador updates.
My friend David Morrill invited me to join the Ambassador (patient advisory) Board Member for the Vestibular Disorder Association, VeDA. David is the Chair of the Ambassadors. I occasionally share posts from the VeDA Facebook page, and help David with his Ambassador updates.
VeDA, an organization I discovered after my MAV diagnosis, works to educate the public and raise awareness about vestibular disorders (MAV is considered a vestibular disorder).
Prior to teaching flute, I had several part-time jobs, while being a stay-at-home mom. I've got a BS in English Literature & Psychology, and a Master's in Human Service Administration. I live
with my husband Ron, our two college age daughters Leena and Cara, and our pets
Maisy (cat), Cosmo (dog) and Molly (cat). Before Maisy & Molly, we
had a wonderful cat named Goldy for 14 years.
Cara and
Leena were both a huge help in getting this blog up and running.
My timeline is an overview of my journey -
https://visiblepersoninvisibleproblem.blogspot.com/2018/10/october-24th-2018-my-timeline-of.html
about my PTSD Anxiety & depression -
https://visiblepersoninvisibleproblem.blogspot.com/2018/11/november-16th-2018-my-depression.html
about vision http://visiblepersoninvisibleproblem.blogspot.com/2015/06/june-12th-2015-more-of-my-story-vision.html ...
about my PTSD Anxiety & depression -
https://visiblepersoninvisibleproblem.blogspot.com/2018/11/november-16th-2018-my-depression.html
about vision http://visiblepersoninvisibleproblem.blogspot.com/2015/06/june-12th-2015-more-of-my-story-vision.html ...
why vision is much more than 20/20:
http://visiblepersoninvisibleproblem.blogspot.com/2016/02/february-19th-2016-vision-is-so-much.htmlhttp://visiblepersoninvisibleproblem.blogspot.com/2016/02/february-28th-2016-about-my-feldenkrais.html
About nerve problems in my hands - "When my challenges really began...", written May 5th, 2015 - see link below:
Here's a link to my YouTube channel - https://www.youtube.com/user/cool09VIDeos1
I invite you to read other posts as well :-)
Thanks!
For more info about vestibular disorders, please go to www.vestibular.org
and for more info on functional vision disorders, please go to the College of Vision Development site - www.COVD.org.
and for more info on functional vision disorders, please go to the College of Vision Development site - www.COVD.org.
Thank you for your letter in the Vestibular Disorder website!
ReplyDeleteYou're welcome!
ReplyDeleteI stumbled on your blog through VEDA. Thank you for ssharing your experiences!
ReplyDeleteSorry I just saw this... you're very welcome - glad you found me :-)
ReplyDeleteI am a wife, and stay at home mom of four children when my husband became ill....he was the sole provider as the children were young, and two with learning disabilities, that as a certified elementary teacher, we made the choice for me to be a full time mom, as he also traveled a lot for work. Like you, some friends and family stepped up, initially, but only for a short period and minimally. We, a family of 6 were very alone in our struggles, but did have an excellent medical team, Neurologist, ENT, Neuropsychologist, OT and they were our our lifeline, our true support. When his company terminated his employment, then terminated our two policies for life and disability insurance we went from being proud, independent, contributes to being worried how we would be able to purchase food and pay our mortgage, for our small conservative house, maintain our old cars, and attempt to prevent our kids from feeling more losses, as they "lost" the health and activities involving their dad that they enjoyed, such as playing catch with a football, shooting baskets bike riding, etc...his migraine and fatigue was robbing him, and them of "life" as we knew it. Having young children, it was heavy for me to compensate in attempting to keep everything as "normal" as possible, for all the transportation needs, school meeting - communication ( 2 with Special Education IEP's), and then the pre-teen, teen years, with little support and a whole lot of false judgement predicated upon ignorance....it was the year 2010....The family needed love and understanding, and help with house maintenence issues, but with his parents deceased, and mine, retired, three homes but invisible, ( the doctor drove me to the hospital to deliver my 4th baby because my "Mom" stated upon my pregnancy news - due date info. that "I'll (she'll) be in Florida at that time"....which speaks volumes of any support thereafter when my husband became ill. Few seemed to really listen...the kids were unable to do/afford the many activities they once did financially or transportation - wise, and maintaining their social lives, the finances, the cooking, cleaning, etc. transporting my husband to his treatments, etc. was exhausting....I tried per diem working a bit, in education,but it was like working two full time jobs with no help, and worse, no understanding/validation, but smiling every day so to ease others' stress....very exhausting. I think your husband and I need to start a caregiver - spouces' blog...as we share little so not to make our spouces feel guilty...to add insult to injury, many whom you do take the time to devulge details to do not actively listen, which displays in their behaviors/actions, requests, etc...and deepens the frustration, and loneliness all the family feels at times. Public Schools need to stop mandating expensive monetary requests and/or time consuming obligations as do the many other childrens' programs that put great
ReplyDeletestress on families with attached contingencies in the name of "volunteering", or "donations"....so many people with soo many requests and families with adversity, whom choose to keep their health information private, are then looked upon negatively because they cannot maintain the expectations of others, more abled, to do so....as the ignorant world falsley judges....It may have been 7 years ago, but seems like yesterday in many ways, as the fall out of such adversity, does not seem to ever go away...we learn to live with it...with a "new yardstick", but a hard pill to swallow for kids...
I just now saw this... sorry so late in responding... I hope your situation has improved
DeleteGreat to find your blogs, beautiful site and touching stories! We are trying to reach more patients with chronic dizziness/imbalance due to vestibular disorders, as we are recruiting participants for a pilot study on an intraoral balance aid at Shirley Ryan AbilityLab in Downtown Chicago. Please pass the message around, especially to those local in the greater Chicago area. Openings are immediate as of now.
ReplyDeleteHere is the flier:
If you have a balance problem, you are not alone. According to the National Institute on Deafness and Other Communication Disorders (NIDCD), 4% (8 million) of American adults report a chronic problem with balance, while an additional 1.1% (2.4 million) report a chronic problem with dizziness alone. The leading cause of dizziness/imbalance is vestibular dysfunction in the inner ears.
Innervo Technology developed an intraoral balance aid to provide balance assistance for patients with vestibular loss. The device partially substitutes the vestibular function by providing in-situ sensory feedback of head movement to vestibular patients in various indoor and outdoor activities. The device is worn like a dental retainer, and can be removed if not in use. It detects the head movement and presents alternative sensory feedback of the head movement by applying small electrical pulses on the palatal surface. More info about the device is available at innervotech.com.
Currently we are recruiting vestibular patients at Shirley Ryan AbilityLab for a pilot study on this device. The study has 5 sessions lasting about 1-1.5 hours each and will include screening, fitting of the device, and balance testing. If you are interested, please contact:
Rehabilitation Technology and Outcomes Lab
Shirley Ryan AbilityLab
355 E. Erie St., Chicago, IL 60611
Research Coordinator: Lori McGee-Koch, PhD
Email: lmcgee@sralab.org
Tel: (312)238-2091
Thank you.