It’s been a week since my last post and surprisingly it’s been brought to my attention. That being said, I have had in-home physical and occupational therapy. Physical therapy went over exercises that I should be doing in order to build my endurance. One exercise I particularly like is standing and working on my core muscles. It feels good to be on my feet again. Basically, I need to engage my muscles while I still can so that I can keep things working as best they can for as long as possible. Occupational therapy is helping me with multiple issues: the bed (always an issue), transferring using a transfer disk and Hoyer lift, and stretches to help with flexibility along with many other little things that come up. The therapy is provided by Duke HomeCare & Hospice.
Hospice is a word that scares a lot of people. Dictionary.com defines hospice as a program of care and support for the terminally ill at home. ALS is a terminal illness. Every year approximately 6,000 people in the U.S. are diagnosed with ALS and they receive a diagnosis with a life expectancy of two to five years. I have faced this diagnosis as my reality but I am fighting to break the odds. Every day is a bit of a struggle. Sometimes ALS wins in some small way and most times I fight for my independence. I try to use whatever assistance is available (and affordable) to win my fight. I am lucky to have a husband who values me more than his bank account. Every day we fight to figure out our journey against ALS. To all my PALS out there, don’t give up. Do what you can to fight ALS when you are able.
Part of my fight means that I will be taking part in research to find a cure or at least a treatment for ALS. Thursday, I am traveling to Boston, MA, for a research study that looks at blood biomarkers in both Parkinson’s Disease (PD) and ALS. I will be flying on a plane and renting a power wheelchair. These are inconveniences that I hope I can deal with. Sure, I hope this research will benefit me, but I also hope it makes a contribution that helps others. It is another part of advocacy and I hope I am up to the task. Please think of me and wish me well in my endeavor to fly with a disability.
hospice. (n.d.). Dictionary.com Unabridged. Retrieved July 21, 2017 from Dictionary.com website http://www.dictionary.com/browse/hospice