When the doctor first utters the words hospice or palliative care, many people freeze. No one wants to hear those words used in reference to their loved one. It’s scary and often families have no idea what this means. Instead of feeling relieved and empowered, families often feel anxious. Many people don’t actually know what palliative care is and how it can help a loved one achieve a better quality of life.
Do you ever get the feeling that you are working for your home? I am not talking about the many years you spend paying for your home. The question is how often do you find that your home makes every day life easier for you?
In the 1950s and 1960s, kitchen appliances, dishwashers, garage door openers, toasters, microwave ovens, and washer/dryers for our clothes started to make our lives easier and give us more time for our family, community, or just for ourselves to enrich our lives. Many of these items were considered luxuries when they were first introduced, but would you consider living without them now?
Falls can be very frightening to individuals with Parkinson’s disease and their care partners. They generally are dramatic and symbolize a loss of control. One of our major goals as an organization is to educate individuals living with Parkinson’s disease on fall prevention and identify ways to prevent falls.
Be sure your doctor is a movement disorder specialist/neurologist (MDS).
Even if your doctor is a neurologist, this does not mean that he/she has the experience or education with movement disorders that will enable them to provide the specific care you need. Visit here for a list of MDS’s in your state. If your insurance company prevents you from seeing an MDS, let them know that this is a serious problem for you and seek a referral. If you cannot obtain one, let your local support group leader know so they can report it to the regional PD organization for follow up. If you have this type of insurance company problem or if there are no MDS locations in your area, locate a neurologist who has demonstrable experience working with PD.
There are many things related to PD that are beyond your control. Getting regular exercise is something you can control that can make a big difference in your symptoms and your quality of life. Establish a plan with your MDS that is appropriate based on your age and condition. Visit here for helpful suggestions regarding exercise and living well.
Participate in clinical research trials.
When you do this you accomplish two things. First, you help with the advancement of knowledge that will lead to a cure. Second, you learn things that may help you. For information on specific studies including availability, location, and timing of research trials visit PD Trials or the Fox Trial Finder.
Care partners, care givers, care takers all mean the same thing. You experience life together. In good times and challenging times. In sickness and in health. Throw in the part about chronic illness. When one of you is diagnosed with Parkinson’s disease, you both live with it. Most care partners focus on the person with Parkinson's well-being before thinking of taking care of oneself. Generally, the care partner takes the person with Parkinson’s (PWP) to various doctor appointments, run errands and maintain most of the house work.
April is National Parkinson Awareness month. It would be great for you to make your voices heard throughout the community. There are a number of ways you can let the public be aware about Parkinson's Disease. You can write letters to the editor or your Congressman making them aware of the needs of the 17,000 people in Colorado who have Parkinson's. It is important to keep the needs of the Parkinson's community in the forefront.
As I sit here remembering one of the best ski outings I have experienced in recent years, I decided to share my joy with others affected by Parkinson’s disease. The January Parkinson’s Association of the Rockies’ newsletter featured an upcoming Ski Program for people with Parkinson’s sponsored by the Breckenridge Outdoor Education Center (BOEC).
My curiosity was peaked. Just three years prior, I thought I had skied for the last time. It was about this time when my brain started to fail in sending the proper signals to the right side of my body; leaving me at the middle of the mountain waiting to be driven to the bottom by the ski patrol. The pain of that moment was indelible.
*In this post are a few common ways to assist with writing, speaking, issues with freezing and taking medications. What has worked for you? Please respond on our blog with your favorite tips and tricks that help you get along each day with Parkinson’s.
Are you having a difficult time swallowing your Parkinson's medications? Try drinking carbonated water while taking your medications. The carbonation tends to help make swallowing easier.
Is your care partner having a difficult time hearing you when you speak? Think of speaking "LOUDER!" The LSVT therapy was developed in 1987 by Dr. Lorraine Ramig and Carolyn Mead, both Speech Language Pathologists. It was the first specific voice treatment for Parkinson's patients and has been proven to be the most effective treatment for people with Parkinson's disease. The therapy takes place 4 days a week for 4 weeks. It focuses on exercises to help you project your voice. Until you have the therapy, try practicing shouting across the room. You may perceive that you are shouting, when in fact, you are speaking louder so others can hear you better.
Walking - we take for granted such an automatic task. Put one foot in front of the other. You stroll along at a brisk pace without taking a second thought to it. That is, until you have been diagnosed with Parkinson's disease.
The ability to go from point A to point B may become more difficult for you. At first, mobility was not a problem for you. Now, you may be less steady on your feet. You might even be having balance issues or experience a fall. You notice that you have "sticky feet" where you feel your feet are hard to lift up off the ground. You may notice that it takes you longer to walk across a room, decreased arm swing, sudden freezing and difficulties navigating narrow spaces.