Living Alone With Parkinson's Disease
Kara LaMarre, Support Group Facilitator for the Alpena Parkinson Support Group and Debby Orloff-Davidson, MPF CEO
Living alone has its advantages. There's no one to clean up after. You can do as you please when you please. There is a downside however, especially if you have to deal with issues associated with Parkinson's disease, such as freezing and falls.
At our recent Annual Facilitator Training Program, a panel of five individuals gave their insight into living alone as safely and as independently as possible with Parkinson's disease. Peggy, Doug, Jeannie, Jonathan, and Nona, who live in both urban and rural areas, provided practical ideas for persons living in their home without the benefit of having a companion to aid them when a need arises.
Doug has organized his house - and himself - to conserve energy and perform tasks. He has motion sensors that turn on lights in each room as he enters. He hangs a tennis ball from the ceiling in the garage, so when he pulls his car in and the tennis ball touches the window, he knows he has parked correctly. He eliminates the need for daily cleanup of the bathroom sink by using an electric shaver and toothbrush while taking his shower. Doug also uses plastic cups and bottles to avoid problems with breakage. Doug feels strongly that organization and planning ahead greatly reduce incidences that may cause problems for him.
Peggy spoke of safety concerns not only for her as a person with Parkinson's disease but as a woman living alone as well. Keep records in case of emergency, such as contact information, a listing of medication including time you take them and dosage, as well as contraindicated medications. Peggy is also very active in her community with volunteer, genealogy, library and civic obligations. If Peggy doesn't show up, someone is looking for her.
Wearing a medical identification bracelet or carrying a card helps to identify what condition(s) one has. Local fire and police departments, Councils or Commissions on Aging and hospitals have developed programs to provide appropriate emergency care at home. When a rescue team is called, it is important to have easily accessible information about your condition in order to assist you quickly. The Petoskey area Retired Senior Volunteer Program (RSVP) promotes the Vial of Life program. An individual fills out a form with vital medical and emergency information and places it in a magnetic holder that attaches to the refrigerator. Many individuals have contacted their local law enforcement, emergency medical service or 911 operations to provide them with information so responders are made aware of the caller's Parkinson's or live alone status. A strong recommendation from the entire group was to familiarize yourself with what services your local community provides to those with special needs.
Other tips for emergency situations include keeping a phone in each room or a cell phone in a fanny pack, preprogrammed with important contact numbers. Inform others of your schedule so they can take action if they have not seen them in accordance with your daily routine. Nona and Jeannie stated a family member or a friend is usually checking in with them with a friendly phone call. Neighbors keep a watchful eye on them which is helpful most of the time!
Everyone agreed that you need to arrange with someone to be your advocate, whether this is a family member, a friend, or a professional. A Durable Power of Attorney (DPOA) is a legal document that dictates that a designated advocate or successor advocate shall have power to make care, custody and medical treatment decisions for you in the event you become unable to participate in medical treatment decisions.
Home safety is important to everyone. An in-home safety assessment can be performed by an Occupational Therapist with an order by your physician. Lucy Kenyon, OTR, from MidMichigan Health Park in Mt. Pleasant, encouraged everyone to investigate the variety of equipment available through medical supply companies and catalogs. She noted that bathrooms can be the most dangerous rooms in the house in terms of falls. Equipment such as shower chairs, toilet risers, commodes with arms and legs, grab bars, non-skid mats, and hi-low tote bars can be very helpful. It is important to eliminate clutter and furnishings, such as area rugs, coffee tables and electrical cords, which would promote falls.
If you do not have someone to help you to dress, a variety of dressing aides can be purchased such as a dressing stick, reachers, and grabbers, elastic or coiled shoe laces, and long or fold-up shoe horns. Velcro can be used in place of buttons and snaps. Many people wear pullover shirts and pants with elastic waistbands.
Getting up from a chair or getting out of bed can be problematic. It is important to sit in firm chairs with arms. Placing cushions on the seat or a raised platform under the chair legs to raise the height can be helpful. Frames can be placed on the bed to assist in getting out of bed. In this way, you can rise without the assistance of another person. A Physical Therapist can make recommendations to help you to move from one position to another.
Being able to take care of finances is also important. If handwriting is a problem, the computer can be useful. Some people have their checking account on their computer. Signature stamps can also be purchased.
Being centered and promoting a feeling of calmness helps Jonathan deal with his disruptions from P.D. If he is having difficulty with symptoms such as freezing, gaining control over his emotions helps him to deal with the problem he is experiencing. Creating the inner peace to contend with symptoms rather than reacting to them is very important.
There were many suggestions for dealing with freezing episodes, which seemed to be one of the most problematic symptoms to cope with while alone:
Try stepping or rocking backwards then forwards.
Step over an imaginary line
Count to 10
Say "MARCH" to yourself
Throw something on the ground to step over, such as a popsicle stick
Do a "primal scream"
Grit your teeth
Getting out, staying active and involved in the community also helps. Each of the panel members is active in his or her respective community. They all noted that you need to reach out to others, keep busy and cultivate your sense of humor. "Remember that you can't do it all - just do what you can. You have to let go of some things."
Problem solving areas that you might find challenging can result in helpful solutions. It was not possible at this session to discuss all the areas in one's life that could be challenging if you live alone, such as shopping and meal preparation, or countering "alone-ness." Identifying what are the problems and methods to attack them in order to maintain independence and safety as well as a sense of well-being is the first step. Seeking out others to help directly or to suggest ways to manage comes next. As several people on the panel said, "never be too proud or afraid to ask."
P.S. All of the above can apply to those living with others as well. We invite you to send other tips to the MPF office so they may be included in future issues of The Messenger. If you would like a copy of a Durable Power of Attorney or Home Safety Checklist, please contact the MPF offices at (800)852-9781.
Over the years, the Michigan Parkinson Foundation has been diligently working towards meeting the needs of people affected by Parkinson's and their families. Two programs have been in operation to assist people with the practical aspects of living with Parkinson's disease.
The Medication Assistance program is designed to help people who do not have prescription coverage as a part of their health insurance and for those who are struggling with medication costs. MPF provides limited funding, currently $250 per year, for Parkinson's medication and will provide information on other sources of assistance. Contributors to the Shawn Bolton Medication Assistance Fund aid people in this needed program.
The Adult Day Care Services Assistance program serves to subsidize the cost of an individual attending a day care program, providing the family members with some needed respite and the person with Parkinson's with a safe environment out of the home. MPF will cover up to $360 per year for the individual to participate. MPF can provide the facility with educational material and is planning further training programs in the near future to ensure that people with Parkinson's receive the best care possible. There are no financial restrictions on the ability to obtain this funding.
By calling the Michigan Parkinson Foundation, people interested in learning more about Parkinson's disease can obtain up to- date information about PD and care issues. Those seeking referrals to neurologists who are interested in treating people with PD and answers to other issues will be able to obtain information about resources in their local area. The toll-free line is (800)852-9781.