My name is Ethelene. On March 25, 2024 I was diagnose with Parkinson. This is after my primary care physician sent me through tests to rule out what my symptoms meant. Parkinson’s is difficult to diagnose because there is no specific test for the condition. Symptoms vary from person to person and several other illnesses have similar symptoms, which means misdiagnoses can occur. Luckily my PCP referred me to NYU Langone, where the doctor was a neurologist and movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinson’s disease and other movement disorders. This type of doctor typically has extensive knowledge of Parkinson’s therapies and ongoing research. Increasing evidence points to biological sex as an important factor in the development and phenotypical expression of Parkinson’s disease (PD). The risk of developing PD is twice as high in men than women, but women have a higher mortality rate and faster progression of the disease. Moreover, motor and nonmotor symptoms, response to treatments and disease risk factors differ between women and men. Which was true in my case. At first, the prescription of Carbidopa-Levodopa 25mg -100 was effective. As time passed, the dose of medication needed went up. It got to the point that my day revolved around my pill schedule to only be functional for a fraction of the day. Which is why I chose to have brain surgery. After some tests, and psychological evaluation, then MRI and CT scans to map my brain. (At North Shore University Hospital) I had the Deep Brain Stimulation (Medtronic Device) procedure on January 18, 30, 2024. After some complications from the surgery, Pulmonary embolism, Hypertension. Thanks to Northwell Health Physicians and Northwell Health Stars Rehabilitation PT, OT, and Speech Therapy team help during this time. Parkinson’s disease (PD) requires significant care, particularly in the later stages of the disease as symptoms progress and the person with PD needs help with every area of daily life, including feeding, dressing, personal hygiene, transferring in and out of bed, and medication management. Long-term care can mean several things, including an assisted living facility, nursing home (skilled nursing facility), or an in-house aide that helps with dressing, bathing, and cooking. Long-term care can be expensive, for example: • Assisted living: In 2016 the average cost for assisted living in the United States was $3,600 per month. However, people with PD often require more care and estimates may be closer to $4,100-to-4,600 per month. • Live-in-care: People with advanced PD need care available 24 hours a day, seven days a week. Live in care ranges from $3,000-6,000 a month, these depending on where one lives. At the lowest cost, that’s $3K a month meaning $36K yearly. Life expectancy estimate (80) so time 40 equals $1,440,000. (100) $2,160,000. At $4K that’s $48K yearly. Life span (80) $1,920,000 (100) $2,880,000 At the highest is $6K, that’s $72K yearly. Life span (80) $2,880,000 (100) $4,320,000 These numbers only include my care. Not including the cost of living rising. The funds are going to be used to buy a handicap accessible Home (In New York City) and Van completely debt free. Also, to fund an account for uptake/ maintenance, property taxes, water bill. Also toward my Long-Term care and medical bills. To help my mom out when 24 Hour care is needed. (By having an certified Nurse, help with the complexity of my medication regimens.) Right now all the caregiver responsible and cost fall on my mom shoulders. I need to reach my fundraiser halfway point Goal before Aug 2026 (my Medtronic battery needs to be replace). Documents https://drive.google.com/drive/folders/1P7PFEGKcb-fBfePQMEKV77BxBctDhKjW?usp=sharing Active Range of motion https://drive.google.com/drive/folders/1zU7wFYGYWx7EBnIrHYruVORn9IlaljeV?usp=sharing Family & Friends https://drive.google.com/drive/folders/1LhWhnsrAchD1PJ1TqvKNEWiP5_kqrXhH?usp=sharing Parkinson https://drive.google.com/drive/folders/1zc39PRx1gVHQPrYYUle-cBTPNxP4fV62?usp=sharing Deep Brain stimulation https://drive.google.com/drive/folders/1JSS-7KxHi71XLVj8ZepguWNT5jkAiBh8?usp=sharing Links in the description area
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