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The Parkinson's Mailbag
Living with Parkinson's disease means living unpredictably. We can never be quite sure when a freezing spell, loss of balance or an "off" period may creep up on us. Our reality is that any of these could send us to the hospital with an injury. Because of the complexity of Parkinson's and its treatment, a hospital stay can be a traumatic and even dangerous experience. Here I suggest tips that I discovered during my own recent hospital stay to make a hospital visit as trouble-free as possible.
Being ready ahead of time
Since we cannot tell when and where an accident may strike, it is important to be prepared. First, have an overnight bag permanently packed with personal items such as toiletries, comfortable sleepwear and footwear and any other items that you may need. In addition, be sure to have all of your insurance information and cards - including Medicare, Medicaid, state assistance and supplemental insurance - organized in your wallet or purse, and in an easily-accessed place not far from the door.
Keep updated copies of your medical records from all of the doctors that you see. Make sure a family member or close friend has copies, and keep additional copies in a safe place. Most emergency medical technicians are trained to check the refrigerator door for important information when responding to a call. This is also the ideal place to store your emergency contacts. Think carefully when designating the people who will serve as your emergency contacts and copy-keepers. They should be reliable and have an up-to-date knowledge of your medical history. They should also be able to serve as an advocate for you when you check in to a hospital; more on that later.
Medication chart and diet
Another document that your advocate should have access to (and which should also be on the fridge) is a medication chart. People with Parkinson's often have complicated medication and dosing schedules that must be followed, in or out of the hospital. The chart can be very helpful to hospital staff, providing them with the guidance they need to help you keep to your schedule. Camilla Flintermann of Ohio points out that your chart should show the exact times and quantities of medication, for all doses needed over a 24-hour period. Add important notes such as the request that was on Camilla's husband's chart that asked that his medications be firmly on schedule to avoid his becoming "rigid and disoriented." Pauline Crawford's husband, David, has had Parkinson's for 30 years, and has a chart to which she has added notes about side-effects of medications, allergies and a history of his hospitalizations.
Another good idea is to keep a list of your dietary restrictions or eating habits. Many of us tailor our eating schedule to our medications to avoid "off" periods, disciplining ourselves to avoid certain foods that seem to interfere with the effectiveness of our medications. Keep a log of dietary factors with the other important documents, and make sure your emergency contact has a copy. Once at the hospital, request that the dietary information be shared with the hospital dietician or ask your emergency contact to do so.
When you arrive at the hospital, first provide the necessary people with all of the materials that you carefully prepared ahead of time. Since you may not be in the best shape to ensure that this happens, you may want to designate your emergency contact to serve as an advocate during your stay. This can be especially beneficial for those of us who are soft-voiced. Gene Noland of Alabama is his mother's caregiver and advocate; he suggests taking two copies of charts and important information - one for the nurses' station and another to post near your bed.
Make sure to inform the hospital's doctors and nurses about any pattern of ups and downs that are part of your usual functioning due to "on-off" fluctuations. Also, explain about freezing spells that might make a short journey, like a trip to the bathroom, precarious. Ask for a nurse's aide to escort you, use a walker and be sure to locate the emergency call button upon entering the restroom.
When you are being discharged from the hospital, review your plans for returning home with the hospital social worker. My own recent hospital discharge allowed me staffing at home, an aluminum walker for easier mobility and a raised toilet seat with handgrips for my safety and comfort. Be sure to let your friends and family know that you will be coming home, and remember to ask for any assistance that you may need, particularly for the first week at home.
Ivan Suzman has lived with young-onset Parkinson's disease for 20 years. He resides in Portland, Maine, and works with PDF on various projects, including writing his regular newsletter column, The Parkinson's Mailbag.