As I had searched for answers to my husband's hyperactivity, particularly acute as the day progressed, and lasting sometimes until 3 a.m., here is the conclusion and recommended course for our situation. Members of the forum had weighed in, and your ideas were very helpful. I was overwhelmed and knew we needed professional help, as I felt I was not equipped to be a do-it-yourself fixit person with these kinds of issues. Here are the steps we took and the conclusion reached, in hopes it may help others who struggle with the same issues:|
A Christian therapist has been working with us and has helped to stabilize the situation at home. He is reassuring, helps my husband focus and make decisions regarding his care and behaviors, and has advised on the involvement of the doctors to evaluate the situation so we can make reasonable improvements. Truly, I don't think I could be in the same household with my husband day after day without the therapist's involvement. I am very grateful as I love my husband and am committed to our marriage and partnership.
His groaning has diminished substantially. He is choking less. He is falling less. His toilet and hygiene issues are resolved and back to normal again. I am now able to sleep, so I am coping better. My husband sleeps about 10:30 or 11 pm again nightly, instead of staying up to the wee small hours or all night, banging, dropping things, cussing, and growling/groaning. With more sleep, he demonstrates far less anxiety, and is doing better overall.
A recent second opinion provided by 3 VA neuros revealed that the dopamine has an addictive effect on some people, and my husband's use, which is very, very high, especially given his DBS along with the behavior issues (compulsive) demonstrate he is addicted and anticipates the fear of the drop of dopamine, thereby increasing the intake to the level it is today. DBS settings are very high, explaining the problems with choking. The battery in the DBS only lasted 2 years, which was quite a surprise to the doctors treating him. They recommend reducing the settings to help choking, and gradually (very slowly and with doctor's guidance and oversight) reduce the amount of daily dopamine.
The high use of the prescriptions has been causing over the past year the hyperactivity, distracted states, and inability to process his experiences, according to the therapist. The sugar, caffein, and alcohol magnify the problems.
Meditation helps, taking deep slow breaths helps, regular sleep and good diet helps. He still consumes a lot of sugar, but far less than before. He is now almost entirely off alcohol as we decided to make our home an alcohol free zone, as he was having up to three servings of vodka (1 was allowed) several times a week, sometimes nightly. We drink if we are out to dinner or socializing with others, just not at home. He still does caffein and immediately suffers from dyskinesia.
The neurologists explained that this high level of dopamine use was contraindicated and causes manic behaviors. He has had the early onset type for 20 years but is in his mid-sixties. They don't want the effectiveness to wear off so there isn't a treatment option as he ages.
He will have surgery next week to replace his battery, and after this he will begin the slow reduction of the dopamine levels under the direction of his neurologist.
The member that provided VA information for applying for services has been my guiding angel. In applying, the second opinion was required. The past year of hellish experience now makes sense to me. I am now praying that my husband does follow what the doctors are recommending.
My husband seems so with it at times and can pull it together in the quiet of a doctor's office for a limited time. So different from the guy I've been living with.
Anyway, hope is on the horizon, and the bullying behaviors towards me are now gone and we have capable and caring professionals guiding our pathway.