A few weeks ago while doing some research I ran across Kate Kelsall’s blog, http://katekelsall.typepad.com/my_weblog/, and after reading it felt like she was someone I could learn a lot from. As Kate and I traded emails and as I continued to read her posts I learned rather quickly that Kate is someone with a deep determination for success whether it be through her daily blogging, her ambitions in life, or her day to day dealings with Parkinson’s disease. Recently I had the opportunity to interview her and I found it to be informative and down to earth.
Caleb: When were you diagnosed with Parkinson’s disease? What symptoms of Parkinson’s disease were first manifested?
Kate: I was diagnosed in May 1996 at the age of 46. Most people who eventually get diagnosed with Parkinson’s spend many months and years going to various doctors and initially are misdiagnosed. It was more straightforward for me. I went to my internist and, while leaving the appointment, mentioned to him that I had a tremor in my left hand. He referred me to a neurologist. After ruling out a brain tumor, Lou Gehrig’s Disease and Wilson’s Disease, and after one dose of Sinemet which stopped the tremor, the neurologist confirmed that I had Young Onset Parkinson’s Disease. A more detailed account of the neurology appointment where I was diagnosed can be found on the post on my blog, The Answer, at: http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html
Also, before my diagnosis I began to take accordion lessons. The day before I was diagnosed, I almost heaved my accordion across the room out of frustration. I struggled to play it with my slow moving, shaky fingers. I also had a shaky left hand at Toastmasters as described in the post on my blog, Toastmasters Doctors, at: http://katekelsall.typepad.com/my_weblog/2006/11/toastmasters_do.htmlÂ
In retrospect, one of the first symptoms of Parkinson’s was its impact on my voice which became hoarse, raspy, soft and monotone. My voice continues to plague me.
Caleb: What was your initial reaction when you were diagnosed?
Kate: I experienced mixed emotions such as:
- Shock that I had a diagnosis of what I thought was an old person’s disease
- Relief that I had a concrete diagnosis to hang on to and that the symptoms weren’t just in my head
- Anger and Why me, God?
- Denial and ignorance about Parkinson’s and thinking that I could beat it with a positive attitude
Caleb: How has Parkinson’s disease affected your day to day living?
Kate: Those who have any chronic, progressive disease such as Parkinson’s particularly young onset, experience many losses. My husband Tom and I both grieve these losses:
- Loss of career
- Loss of income
- Loss of identity
- Loss of self-esteem
- Loss of health
- Loss of friends
- Loss of some mobility
- Loss of some cognitive function
- Loss of control
- Loss of independence
- Loss of future dreams
In my Pre-Parkinson’s phase, I could rationalize single losses as temporary setbacks. However, with Parkinson’s being chronic and progressive, the losses are permanent and will only get worse as the disease progresses. The single losses of the past (job, relationship, death of friend) have morphed into multiple losses. They have mounted up layer by layer and magnify the impact of each individual loss.
Caleb: As you’ve experienced Parkinson’s disease what has been the most frustrating/beneficial aspect of it for you?
Kate: The most frustrating aspect of Parkinson’s for me is its unpredictability. I never know for sure if my meds will be on or off or whether I’ll be dyskinetic (those involuntary movements such as writhing and flailing) or immobile. See my post Unpredictable at: http://katekelsall.typepad.com/my_weblog/2007/07/unpredictable.html In terms of beneficial aspects:
- I created a meaningful hospital volunteer position as a DBS patient and family liaison.
- I created and developed a blog called Shake, Rattle and Roll: An Insider’s View of Parkinson’s Disease.
- I discovered yoga and dance which are complimentary to traditional medicine and help sooth my body and calm my mind.
Caleb: Understanding what you know now about yourself as well as Parkinson’s disease, what advice would you give to yourself after being diagnosed with Parkinson’s disease? Kate: I would tell myself and others living with Parkinson’s the following:
- Appreciate life more, and don’t take it for granted.
- Hug those you care about and tell them you love them.
- Don’t be afraid to tell others about your diagnosis of Parkinson’s.
- Most people are supportive and want to help.
- Keep active physically and mentally.
- Don’t postpone doing what you love.
Anxiety disorders are a unique group of illnesses that fill people’s lives with persistent, excessive, and unreasonable anxiety, worry, and fear. They include generalized anxiety disorder (GAD), obsessive-compulsive disorder (OCD), panic disorder, posttraumatic stress disorder (PTSD), social anxiety disorder (SAD), and specific phobias. Although anxiety disorders are serious medical conditions, they are treatable.
An anxiety disorder and a co-occurring chronic pain disease can make a person’s health more difficult to treat. But a variety of treatments and lifestyle changes can offer relief. Possible health complications are noted below:
•Increased disability or reduced functioning
•Poorer quality of life
•Poorer response to treatment
•Poorer treatment adherence
•Increased perception of disease severity
Chronic pain sufferers who also have an anxiety disorder may have lower pain tolerance or a lower pain threshold, this indicated findrxonline in article. People with an anxiety disorder may be more sensitive to medication side effects or more fearful of harmful side effects of medication than chronic pain suffers who aren’t anxious, and they may also be more fearful of pain than someone who experiences pain without anxiety.