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Schizophrenia and movement disorders
Mental Health | Last Active: Oct 6, 2022 | Replies (20)Comment receiving replies
Hello @lisaben, Welcome to Connect. I just want to let you know that you are not alone. Our son was also diagnosed with schizophrenia in his early teens and spent over a year in the hospital and when they gave up on him, he spent six months in a state hospital where the goal was to help him learn to live with his condition along with the medications. He's now in his mid 50's and doing really well but the first 10 years were tough on him and my wife and I. What really helped was finding a local support group associated with the National Alliance on Mental Illness (NAMI). They have some good information you might find helpful along with a search tool to locate a local support group here - https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Schizophrenia/Support.
I think the best thing that helped our son was being able to manage his medications so that he is able to function and keep a job. Early on it was difficult for me because I don't think I understood how important it was for me to respond calmly when he was having difficulty. It was extremely helpful to have a local support group with other parents in the same situation and being able to share experiences. Over the years his diagnosis was changed to manic depression and his doctors tried several medications until finding one that worked the best for him.
Do you have a local support group in your area?
Replies to "Hello @lisaben, Welcome to Connect. I just want to let you know that you are not..."
Hi John
After years of Abilify his involuntary movements have increased. As your son, mine as well tries to hide these movements.
We were just told that Abilify is to have the least side affects.
It was suggested that he take a prescription that might keep theses movements in “check”
He reads up on all scripts and will not take anymore medication.
Botox has been suggested.
Is anyone familiar with Botox to reduce movements.
Thank you
Connect
Hi John,
Thank you for replying so quickly. I have joined NAMI and went to Family to Family about 7 years ago. Then I became a facilitator through Indianapolis but the group I joined was not recognized for some reason and it got political. We have not met since Covid.
I am so happy that your son was able to find his way. Thankfully for my son, he has tremendous family support and a lot of love. Without his brothers, this once popular athlete would have no friends. They all abandoned him in high school bc of his behavior.
Unfortunately, the negative symptoms are most prominent in my son, and his illogical thinking keeps him from sustaining a job. Now with his mannerisms increasing, he is getting stranger. I wonder if the mannerisms are precipitated by boredom? It’s so hard to see him circling the house every day with nothing to do. I try to take him places and he likes to go out with his brothers.
Honestly, we have yet to find a doctor that really cares. The U of Chicago doctor did not warn me about how much clozaril we would have to achieve for therapeutic effect. He landed in the hospital after trying to kill my husband. U of C has no inpatient for mental illness, so he spent 7 weeks at Regional. His doctor never followed up. We moved to St. Catherine hospital with a doctor he likes who did both in and outpatient, but he rarely kept appointments being stretched so thin. He was fired. Now we have a nurse practitioner and I find myself checking his clozapine levels through my chart. I am his advocate. By law, blood tests must be taken but the doctors are too busy to check if the levels are too high or too low. A month ago, after adding another med, his levels were double the highest range. I alerted the doctor. Shouldn’t this be the other way around? I seek better care for him. I know he could be on a better place for his normal. I just can’t find a doctor with the experience, time and concern for him. If you know of anyone, I am all ears.