Chronic diseases – such as heart disease, cancer, diabetes, stroke, and arthritis – are the leading causes of disability and death throughout the United States.
The state of New York alone cites more than 40% of adults suffer from a chronic disease, and chronic diseases are responsible for 23% of all hospitalizations in that state. Physical, Occupational and Speech and Language Pathologists encounter patients who suffer with chronic disease daily.
I had the opportunity to speak with Jennifer Adams. Eight years ago, Jennifer was bit by a tick. She completed the 30-day regimen treatment of amoxicillin but then her health began to deteriorate. Over the next three years Jennifer experienced a steady decline in function including tremors, decreased strength and balance deficits, cognition decline, nausea, GI symptoms and speech difficulty. In those three years she saw 21 different physicians and received diagnoses of Parkinson’s disease, ALS and multiple sclerosis. Since she had received the recommended treatment for Lyme disease she never once thought her symptoms were related back to her tick bite. She is quick to point out that every physician truly wanted to help and therefore she tried numerous medications for Parkinson’s, multiple sclerosis, and ALS that did not assist her condition.
Through a series of serendipitous events (one benefit of social media) and a significant amount of personal research, Jennifer considered the possibility that she may have Lyme disease.
She was tested for Lyme with the “Western Blot” test. The test came back positive indicating an advanced stage of Lyme disease. After three years Jennifer finally had a diagnosis. However, this diagnosis placed her in a medical black hole. Most insurance companies do not recognize Lyme as a chronic disease. The treatment for Lyme is the initial 30 days of antibiotics that Jennifer had already received. However, she continued to experience the effects of Lyme disease which had caused endocarditis, as well as liver and kidney dysfunction.
Now, fast forward to October 2017. Jennifer is utilizing a wheelchair for her mobility. Due to right-sided weakness, Jennifer requires assist for bathing, dressing, and transfers. Jennifer is referred to Physical Therapy and she chooses a local outpatient clinic, Simio Therapy.
She meets Adam, a physical therapist, whose most effective treatment strategy is connecting Jennifer’s goal of total independence into achievable functional goals that spur on confidence and hope.
Over the course of two months Jennifer progresses from assist-with-transfers to independent in the wheelchair. Jennifer then conquered walking first with a 4ww-to-cane and then without assistive device. Upon our interview in June 2018, Jennifer had attempted her first marathon. She completed 14 miles and now has a new goal of a local marathon in October 2018, one year after being in a wheelchair!
So, I asked Jennifer, based on her experience, how would she recommend a rehabilitation professional approach a patient who has a chronic disease?
Jennifer provides a window into what it is like to suffer, endure and persevere when challenged with a chronic medical condition.
Jennifer’s tips for health care professionals when dealing with chronic illness:
- If you don’t know what is going on tell the patient, “I don’t have the answer, but my team and I are going to work with you and help you find the answer. “
- When the person walks in remind yourself that the person is “not less than.” Look at them as a whole person; a tremendous gift that just needs to be unwrapped.
- Integrate real life goals with therapy. How can you make your home exercise program meet the patient goals?
- Ask yourself, is there a neurological component that I may be missing? Does the person need more instruction in learning HOW to complete the correct movement?
- Look at the person holistically. Is the patient a mother, a spouse, a grandparent, etc. See them in their own environment to develop meaningful therapy goals.
- Don’t treat the patient as being broken. See the person as whole. The potential, the hope, just may need to be unwrapped.
- It may be a fusion of Western and Eastern medicine that will be the best program. Keep an open mind.
Jennifer challenged me to look at each patient individually and ask myself, “What do I see? Do I see hope and potential, or do I see a person who is broken?” What I see is a powerful tool of hope for each patient.
If you would like to hear my interview with Jennifer, the podcast is available on our podcast page here. You’ll also find links there to listen on your favorite podcast platforms.