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.
At the beginning of the New Year many people make resolutions. A common theme is taking care of your health by watching your diet, quitting smoking, drinking less alcohol and starting an exercise program. Sound familiar? "Take care of your health". What does that mean? In the Parkinson's community it is important to include exercise in your daily routine.
This posting is a snippet of the Recently Diagnosed with PD blog, written by Betsy Vierck.
Almost three years ago I was also diagnosed with Parkinson's. Ginny and I became refuges for each other. We have been extremely tight, speaking in a language that non-PDers can never understand.
I learned so much from my friend. I did not realize it at the time that I was acquiring the knowledge. Her influence on me was subtle, which was her way. I have dubbed three of Ginny's lessons Ginny Fraser's Three Steps to Living Happily with PD. They exemplify her grace in adapting to her physical changes.