Living Alone with Parkinson’s Disease
Any new diagnosis can bring with it questions, fears, and concerns for the future. A diagnosis of Parkinson’s disease (PD), a chronic lifelong condition for which there is no cure, would be unsettling to anyone, even those who have a great support system. For someone who lives alone, it can elicit additional feelings of worry and uncertainty about how you will be able to cope, staying in your home.
Parkinson’s is a neurodegenerative disorder that affects the brain resulting in changes to motor and non-motor skills. Damage to nerve cells that reduce dopamine production can affect movement and emotions.
Many people who live alone cope well with their condition. As PD takes a unique course with each person, there is no single approach to taking care of one’s self. Each person will develop a distinct set of symptoms during the progression of their disease. Some will experience changes in motor skills, as generally experienced with early stage PD. Others can develop substantial mental health disruption in addition to the deterioration in motor function that may make it difficult to live on your own.
Managing living along with Parkinson's
There are some basic things you can do to maintain or improve quality of life. Many resources are available online and in your community.
Social interaction is an important component of keeping mentally fit for anybody with PD. Interacting with others and participation in activities helps to keep your mind and body sharp. A PD diagnosis can lead to feelings of isolation and loneliness and diminished involvement in activities or work because of fear of physical or mental limitations.
Going to work, exercising, and reading are activities that help everyone to keep the mind sharp and body as flexible as possible. Mind and body go together with Parkinson’s. You may already have a routine you share with a friend or colleague. You can continue to enjoy these experiences while addressing any limitations you may have due to PD.
Get involved or stay involved
Whether you have PD or not, good health is better maintained when you are involved. Work, hobbies, and exercise all contribute to staying engaged and sharp.1 Some suggestions to consider:
- Keep working
- Take a class
- Join a book group
- Join a support group
- Join an exercise class
If you have been dependent on driving to get to work or get to fun activities, you may want to seek out other forms of transportation. Do activities with a friend and ask them to drive. You might even hire someone to drive you instead of having to pay for parking.2 There are also shared car services in addition to public transportation and services like access-a-ride. Local Parkinson’s groups or organizations can help you to identify transportation options in your area.
Your care team
Identify who can help you in your home. Besides your medical team, there are times everyone just needs care. If you have the flu, you’d need someone to bring you soup or pick up your medications. Do you have friends or family whom you can count on? As PD advances are there people who can assist you regularly with tasks such as housekeeping, cooking, and transportation? Some resources are not Parkinson’s specific; try investigating community resources like meals-on-wheels and visiting nurse services.
Safety in the home
You’ll probably want to make some changes to your living set up. It all starts with the lighting and a clear path. Take a walk through every room to de-clutter it and make sure there is a wide enough space to minimize obstacles that can trip you. There are many resources available to assist with this. Here are some quick areas to consider to help get started:
Bathroom - use a shower rather than a tub; get a shower seat, install grab bars, and get a higher toilet seat.
Kitchen - change knobs and utensil handles appliances to those that are easier to grasp. Switch from glass to plastic for dishes and glasses, and products you buy. Use flexible straws and gadgets that provide opening assistance.
Clothing - look for clothing without buttons or clasps; elastic waists and pullovers are easier. Swap heels for flats and laces for Velcro.
Telephone - carry a mobile phone with you that has important numbers pre-programmed.
Personal Medical Device - wear one on your wrist or around your neck so if you fall or are otherwise unwell you can signal for immediate assistance.
Living with PD is a challenge. Living alone with PD may be an even greater challenge. Think about the things you normally do and identify changes that may need to be made and who can help you. You may not be able to climb on a ladder to change a light bulb or clean the gutters, but let’s face it; you never really liked doing that anyway. Now you can justify asking someone else to do the work.
Local Parkinson disease chapters and support groups can help you identify local services.
Do you participate in a support group for PD?