Tafi shares how technology and self advocacy transformed her journey with Parkinson's in Maine

In this moving and candid piece for our Community Voices section, Maine resident Tafi opens up about her journey of reclaiming her independence after a period in a nursing facility. From her vibrant personal style to her resourceful use of everyday technology and digital tools, she offers an inspiring blueprint for active self management and partnering effectively with medical professionals. Her story is a powerful reminder of how determination, adaptability, and the right tools can help us maintain control over our lives when navigating the progression of the condition: $1 I live in Bangor, Maine, a small city with a population of about 32,446. I am very happy here. Bangor is small enough to be very livable, but big enough to have everything I need. I grew up in Pembroke, Maine. Pembroke is a small town in the “Downeast” region of Maine, roughly north and east. It has a population of about 788. It is very isolated, and surrounded only by other small towns. I did not care for living there. I came to Bangor in the early 1980s looking for work, and stayed. I am now 64, established, and living independently in my own apartment. I have an excellent quality of life. I am of mixed race. My grandmother on my mother’s side was Irish, and my grandmother on my father’s side was Black. As hobbies I enjoy working with technology, and I am into piercing and tattooing. I have quite a collection of body art. I am unconventional in expressing myself. Like many women my age, I have a lot of grey and I am planning to color my hair. Unlike many women my age, I am going for purple. My life was centered around my work for a long time. I did not have a career as such, but I always pursued employment. My first job was packing sardines, which was messy and unpleasant. I found it difficult to stand in one spot in an eight-hour day. In my last job, I worked as the office manager for a local non-profit agency. Unfortunately, I had very little consideration for my health at that time. I worked five days a week, then drank too much on the weekends. I enjoyed the office job very much. I had a variety of tasks and responsibilities, and worked pretty much without supervision. I was sorry to have to leave it when I started to have unmanageable symptoms of Post-traumatic Stress Disorder. Up to then I had successfully managed Bipolar disorder. I went on Social Security disability benefits in 1987. I felt very lost not working. Then I decided I was going to get a life. It took me seven years, but I finally walked out of a bad marriage. It was a difficult decision, but one of the best ones I have ever made. I gained much stability, and I no longer had to cope with my ex-husband’s instability. In March 1993 I moved into Kenduskeag Terrace, a housing project for seniors and people with disabilities. I lived there happily for thirty years. During that time, I unsuccessfully attempted to continue my education at the University of Maine. I completed two years of a four-year degree program, but had to quit because I didn’t know how to manage my time or my stress. My health began to decline. I developed Chronic Kidney Disease and Diabetes. I started to use a walker because of balance and mobility issues. I began to have a lot of problems with falling. I was undiagnosed, but I think that was when I developed Parkinson’s Disease. In May 2023 I was diagnosed with Congestive Heart Failure, and I allowed myself to be pressured into going into a nursing facility. I ended up spending a year there. While I was there, I developed a problem with tremors. At first the doctors attributed them to a medication side effect, but they sent me to a neurologist. He diagnosed me with Parkinson’s Disease in 2023 and put me on Carbidopa- Levodopa. I was given no other treatment and no information. It seemed to be just something else wrong with me, which I found very depressing. I was unhappy in the nursing facility, because I had no privacy or independence. After two months there, I felt I had made a big mistake, so I began putting in applications for subsidized housing. There was a wait list of a year, but in July 2024 I was lucky enough to be able to move back to Kenduskeag Terrace. When I had arranged to rent this apartment, I informed the staff I was ready to discharge. They were all incredibly supportive, and collected donated items and bought things for my new apartment, because I had to start all over again. Things began to come together for me. I had to work to re-establish myself, but I have done this. My PD has continued to progress. Most of my problems are with balance and mobility, and this has put me in a wheelchair. I learned how to use a wheelchair, and how to do things from a wheelchair. This way I was able to maintain both my safety and independence. I continue to adapt, and I am learning to be more creative, flexible, and organized. Right now, I am working to better manage my time and my money. I have always been into using technology to improve my quality of life. For a long time, I have used a spreadsheet program to stretch my money further. I began to actively explore other apps. I don’t have money so I keep things simple. I only use two devices. I have a desktop computer which my brother generously bought me, and a smartphone that I got free of charge from a government program. I have slight tremors and the touchscreen on my phone is very sensitive. I got a phone case with a screen protector; that lowers this. I also use an ancient, low-tech device to improve my accuracy and control, a stylus. I paired my smartphone and computer, and downloaded an app to share files between them. I pay for a WiFi connection, but I use freeware. I went to an AI chatbot, prompting it with my problems and limitations, and telling it to give me suggestions to improve my quality of life. It came up with many useful ideas, and even told me about local resources I could use. This was very helpful, and I referred back to this chat often. During an internet search for tech tools to manage PD, I discovered PD Buddy. Using this app opened up a whole new approach to managing my healthcare. At first, I was only looking for symptom tracking for my PD, but I found so much more. It is a wonderful influence. I am now actively engaged in activities to self-manage my health conditions. I am very involved, vocal, and educated about my healthcare. I partner with my medical providers. I apologized once to my psych nurse for being “difficult” and he said, to the contrary, he found me easy to work with because I made my needs known. I use tech to communicate with my medical providers, through a message board the health organization maintains. My communications include renewing prescriptions, asking questions, making appointments, and exchanging information. I would encourage you to do the same in some way. Get informed and ask questions. Speak up if you disagree with anything. Communicate. Get involved with your care. I would also encourage you to use technological tools. They can really add to your life. You can use tech as little as you want, but I would suggest you find an app to manage your money. This is key to having a good life. They have apps specifically for personal budgeting. Using the internet is great for staying in touch with email and chat, and it is also a great way to get information and find resources. If you feel intimidated, don’t be. It’s only a machine. I hope that you were able to find something useful in my story. Good luck on your Journey and best wishes.