Bruce took the medication for a few months, slowly building up the dosage over time until it was at the maximum dose. Unfortunately, it did not help Bruce with his symptoms. We returned to Mayo in November, and the doctor told us unfortunately it was a long shot because the medication does not help many patients with the severe forms of Parkinson’s and started Bruce on the process of weaning back off the medication.
Bruce tried to keep working as long as he possibly could, but it became increasingly difficult for him and his hours worked steadily dropped. By summer we knew he would have to make the difficult decision to quit and take early retirement, and he retired at the end of August.
We returned to Mayo in August of 2017 for follow up. The doctor repeated many of the tests done the prior year. In every category, we saw the discouraging results of the progression of this wretched disease. Our doctor finally told us he thought Bruce might have Multiple Systems Atrophy (MSA), a progressive neurodegenerative disorder characterized by a combination of symptoms affecting both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement, due to the progressive loss of function and death of different types of nerve cells in the brain and spinal cord. He was not 95% sure, so he would not enter it as a diagnosis yet.
Bruce is now permanently disabled and we were approved for Social Security Disability in September of 2017, but we didn't start receiving this benefit until the end of March of 2018.
We returned to Mayo Clinic for further testing beginning in August 2018. Bruce was now at 70% autonomic failure. His symptoms continue to increase and worsen. When these most recent test results were evaluated by our neurologist, he gave Bruce a diagnosis of Lewy Body disease.
This devastating diagnosis breaks our hearts. This disease attacks the nerve cells in the brain, especially at synapses, where brain cells communicate with each other, starting in areas of the brain that control aspects of memory and movement. It causes neurons to work less effectively and, eventually, to die, and also affects the activities of certain brain chemicals, resulting in widespread damage to specific brain regions and a decline in abilities affected by those brain regions. Unlike MSA, Lewy body disease affects multiple different brain regions, affecting information processing, perception, thought, and language; the region controlling emotions and behavior; the ability to form new memories; controlling movement; regulating sleep and maintaining alertness; and ability to recognize smells (which also affects taste).
Bruce's disease progressed to the point I started having trouble managing the amount of care he requires 24/7. On February 15th of this year (2019), a social worker convinced me to have Bruce evaluated for hospice care and he was immediately approved. He required assistance in toileting, showering, and dressing. He was getting so tired he was spending 12-15 hours or more in bed. His mobility was declining steadily and he was getting out to do things less and less. Hospice began sending an aide to assist with showering 2 times a week, a nurse once a week, and a social worker, music therapist, and spiritual counselor every 2 weeks.
About the same time, we also made the difficult decision to move. We are trying to control costs the best we can, and I was hoping to find somewhere I could more easily manage Bruce’s care and reduce the strain with a smaller place to keep up. Since Alana is now married, we didn’t really need three bedrooms anymore and our current place was going up significantly in cost if we renewed that lease. The move started May 3rd, with Bruce staying at Hospice House for 5 days while family and friends helped me get us moved. Unfortunately, in the process I grew so tired I stumbled and broke my right arm, both bones at the wrist, through the joint. After surgery to put in a plate and a couple screws, I couldn't drive for 10 weeks while I waited for it to heal.
Meanwhile Bruce continues to decline. Our hospice nurse increased his aide to 5 times a week, now doing bed baths instead of showers. He stays in bed 15-18 (and sometimes more) hours a day. His skin is more fragile and we have to stay alert to any changes to make sure he doesn’t start getting any kind of sores. He is barely walking and only leaves home for essential doctor visits, and hair and nail appointments. These are rapidly becoming harder for him, and I don't know how much longer he will be able to keep these up. He is on 24-hour oxygen now and bringing the tanks with us makes it more difficult to get out. He is experiencing more symptoms of dementia, but these are very random and come and go without warning. It’s one of the most frightening and unnerving aspects of this horrible disease because we are kept constantly on alert, not knowing when something will change and when it does, how long it will be. He says food doesn’t taste right more often and he can choke with no warning. He has no control of his bowels or bladder because of the autonomic failure. It’s hard to explain all the challenges we face every day as he slips farther away from the strong, brilliant, capable man I married just 36 and a half years ago. I try to give regular updates on our Caring Bridge Site for family and friends who would like to stay informed of what's happening ( you can find Bruce's page at https://www.caringbridge.org/public/bruceminer). Our love and devotion to each other keep us seeking God for answers and healing, and motivate us to diligently keep fighting to make the most of however much more time God gives us here together.
The costs for medications, treatment of symptoms, and testing are enormous and wreaking havoc on our budget. The loss of Bruce’s income and change to retirement benefits combined with the social security disability, left us with a significantly lower budget to work from. There is a constant stream of new and recurrent expenses for supplies, equipment, and tools we need to help Bruce try to stay independent and safe.
While this is very difficult for us, we are asking for help to offset costs associated with this diagnosis. We appreciate and are thankful for any support you may be able to offer. May God bless you richly for your generous heart and continued prayers. We are praying for a miraculous healing and trusting God, and we pray for you and your family.
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