Both my grandmother and my mother have coped with Alzheimer as they age. My mother is 85 and I live with her and help her to get along with her daily activities. I have noticed that an attitude of loving kindness and truthful acceptance of the situation is a wonderful way to cope with the shocking losses in memory. Moods will change and a little depression can set in when a patient realizes they aren't quite capable of managing something they imagine they ought to be doing. Nothing changes this little set back as much as music. Music reaches into the brain and pulls out a younger eager person who remembers every word to every song and whose mood joyously sours as they hear familiar pieces. Suddenly as they are moving through their daily routines listening to this uplifting music a sense of well being settles a reassuring mantle upon their troubled shoulders. We noticed this just this week when a visitor came with a similar problem. My father was able to go into his archives of music and pull out songs from the era of this persons young life. Suddenly the quiet shy gentleman who is troubled by his forgetfulness is suddenly singing, "Don't sit under the apple Tree with anyone else but me!" and he has joined the group and feels at ease. Wouldn't it be interesting to develop a device that can find music from the patients teens and twenties and play a version. Then the care giver can mark and categorize the music according to what it does for the person and build a play list accordingly (this music makes her feel good and remember things and be active, this music makes her sleepy and relaxed, this music make her feel like it's ok to go take a walk, this music takes away the building anger and frustration, etc.). Then, given a certain mood, the caregiver could play the playlist to help create the desired atmosphere. Music even helps with building new habits and procedure and if one plays the same piece during a new process it seems to help create the process and when the music come on again for the patient it sets the mood and expectation for a successful event.
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My name is Heidi Grabenstatter. I am a neuroscientist, a mom, a wife, a daughter, and a patient living with epilepsy. I was diagnosed with temporal lobe epilepsy at the age of five. In attempt to control my seizures, I have undergone two resection surgeries, I am dependent on high doses of three antiepileptic drugs and a vagal nerve stimulator, but continue to have complex partial and secondarily generalized seizures. My research focuses on potential causes and consequences of chronic epilepsy and autism. In particular, I am interested in identifying new therapeutic targets to inhibit pharmacoresistant epilepsy. As a patient-scientist in the neuroscience research community, it can be frustrating that our process of discovery often overlooks patient needs. As the numbers of patients that are affected by neurological disorders increases yearly and funding by the primary investors of medical research continues to decrease, a new source of tool/device development built upon patient perspective is needed to improve the cost and rate that effective treatments reach patients. I believe there are underexplored opportunities that lie beyond the scope of what is currently being funded, and I am confident that patients and caregivers will drive future innovations if given an opportunity to voice their needs. Neurology Patient Initiative is here to give you that voice. Please share your story or propose an idea for a future patient-driven challenge on our "contact page." Crowdsourcing patient-driven ideas will diversify the brainpower applying their talents to your product and service proposals allowing any maker, solver, or aspiring scientist to take a shot at cracking the challenges.
Thank you for your contribution,
Heidi