On April 6, 2021, while in the middle of North Dakota, I noticed an involuntary chewing motion of my teeth.  It wasn’t noticeable to my husband, who sat beside me as we drove down Interstate 94 headed for Minnesota.  I tried to stop it, but my efforts didn’t work.  The motion went on and on as the miles passed.  How could something like this be happening to me, a psychiatric nurse of 36 years who had counseled many people on the side effects of the involuntary movement disorder, Tardive Dyskinesia (TD), from psychotropic medications?

I told my husband about the chewing motion that evening at our hotel.  He said he had not noticed and was surprised and upset that this was happening to me.  All I could think about the entire vacation was hiding my condition at family gatherings.  This was a tiresome job and emotionally exhausting.  Every morning when I woke up, I checked to see if it was still present, and every morning it was.  I couldn’t deny what was so apparent – I had TD.  I am a woman of faith and immediately began praying for God to intervene in my situation and asked my husband, sisters, friends, and bible study women to join me.  I wanted to live with TD gracefully and not bitterness for having the disorder. 

When I returned home, I called my psychiatrist.  All appointments were virtual because of COVID-19, but my doctor confirmed what I already knew.  We discussed several different treatment options: stopping Abilify (the most likely medication I was taking causing TD) and possibly starting a medication to help with TD.  I was told the chewing motion could intensify when Abilify was stopped — and it did — but we felt this was a good plan.  I was prescribed Ingrezza (Valbenazine) and knew it would be expensive.  However, I thought I just might be able to afford it since I had Medicare and supplemental Part D insurance.  I came to find out it would cost over $1,000 a month and was denied coverage and instructed instead to deal directly with the manufacturer.

I believed the Medication Assistance Program at the clinic where I worked could help since my insurance didn’t provide coverage.  Instead, I was instructed to contact Ingrezza’s manufacturer’s medication assistance program.  Upon speaking with their patient assistance program, I was informed that because my insurance was Medicare, the only help they could offer was the encouragement to find a sponsor to pay for my medication and provide me with a list of information they needed from my psychiatrist to start the process.  With a heavy heart, I spoke with my psychiatrist’s nurse and relayed what Ingrezza’s patient assistance program required.  Through it all, I kept plugging along, jumping through hoops, and hoping against hope that there would be help.

Coming straight off Abilify put me into a depressed state and increased the intensity of the involuntary chewing movement.  At my follow-up appointment with my psychiatrist, we decided to restart it at a low dose and increase it if needed.  This was the best option for me because it worked very well as a mood stabilizer, and stopping Abilify didn’t make TD go away. 

On May 18, 2021, less than six weeks after TD began, I checked for the chewing motion.  This morning, it was gone.  I was ecstatic and overjoyed.  Yes, TD was gone and, to this day, hasn’t reappeared.   I call this my miracle and am forever grateful to God for His mercy.  I have a long-time friend and psychiatrist with whom I shared my miracle, and she told me it was one way to explain its disappearance.

Although my time with TD was relatively short-lived compared to others, I experienced great disappointment over the inability to procure the medication for my movement disorder.  In all my life, I had never been confronted with this possibility, and I needed courage, hope, and grace amid struggle and uncertainty during this time.  With a responsive team of people – my psychiatrist and his nurse, family, and friends – and my faith, no matter the outcome, I knew I could live each day determined to make the best out of what life had given me.

Our support groups are hybrid meetings – in person and via Zoom

CONNECTION SUPPORT GROUP:  Beginning December 2023, every Thursday:
Thursday afternoon (1:00 – 2:30 pm)
We no longer have a Sunday Connection Support Group

FAMILY SUPPORT GROUP:
Tuesday evening (6:30 – 8:00 pm)

To participate via Zoom, email your contact information to info@namibillings.org and a support group facilitator will reach out to you with access.

Our support groups are hybrid meetings – in person and via Zoom

CONNECTION SUPPORT GROUP:  Beginning December 2023, every Thursday:
Thursday afternoon (1:00 – 2:30 pm)
We no longer have a Sunday Connection Support Group

FAMILY SUPPORT GROUP:
Tuesday evening (6:30 – 8:00pm)

To participate via Zoom, email your contact information to info@namibillings.org and a support group facilitator will reach out to you with access.