Kathleen Rupnow
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thread 1/14
Leading up to the Parkinson Canada SuperWalk, I am going to post about my connection to the disease and try to increase the overall understanding of what it means to be diagnosed with this condition.
08:14 PM - Aug 27, 2023
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Kathleen Rupnow
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thread 2/14
In the fall of 2013 my son saw his doctor because he suspected that he had Parkinson's disease. He was 38 years old at the time. Something he didn't know: his doctor had Parkinson's disease. This fact likely helped him to get a proper diagnosis.
09:03 PM - Aug 28, 2023
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Kathleen Rupnow
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thread 3/14
Although his GP was sure he had PD, my son still needed to see a Movement Disorder Specialist to get a diagnosis. At first this specialist thought he might have Essential Tremors like Katherine Hepburn. He was sent for blood work and an MRI. I was hopeful that he had Essential Tremors. He was not.
11:38 AM - Aug 29, 2023
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Kathleen Rupnow
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thread 4/14
After the MRI and the bloodwork, my son has an appointment with his specialist to get a diagnosis. By this time he has started to experience "freezing". 'Freezing of gait' (FOG) is the experience of being unable to initiate a step. It can feel like one's feet are stuck to the floor.
09:47 PM - Aug 30, 2023
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Kathleen Rupnow
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thread 5/14
"Freezing" cleared the way to the specialist diagnosing Parkinson's. My son was prescribed medication that did help with the tremors but caused him to have major nausea and he was having trouble staying awake at work. (He works in an elementary school - not a quiet place). He felt bad all the time.
11:08 AM - Aug 31, 2023
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Kathleen Rupnow
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thread 6/14
Because the medication made him hallucinate and feel awful, my son decided to go off of it and began walking back and forth to work each day (over 7 miles/11.5) in hopes that the exercise would help him manage his symptoms. It actually worked for awhile.
06:54 PM - Sep 01, 2023
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Kathleen Rupnow
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thread 7/14
Eventually, my son went back to taking medication. I was following a FB group in the UK and someone on it suggested a drug he hadn't tried. He asked his specialist to prescribe it and he has been on it for a few years now. There have beens ups and downs but overall it's working for the time being.
03:09 PM - Sep 02, 2023
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Kathleen Rupnow
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thread 8/14
When I say my son's medication is working I don't mean to say he is cured. They help to control the tremors and provide some relief from the stiffness and soreness that is always with him. Parkinson's disease is progressive and his symptoms will get worse over time. The medication will stop working.
09:51 AM - Sep 03, 2023
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Kathleen Rupnow
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thread 9/14
Parkinson's is a chronic, progressive disease that occurs when brain cells related to movement are dying. People with Parkinson's can experience symptoms including resting tremor, slowness of movement, muscle rigidity, balance problems, anxiety & depression, sleep issues, and cognitive impairment.
11:17 AM - Sep 04, 2023
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Kathleen Rupnow
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thread 10/14
More than 100,000 Canadians live with Parkinson's, a number expected to increase substantially in the coming years, with 30 Canadians diagnosed each day. The average age of diagnosis is 60, but some people are diagnosed prior to 50 and referred to as having early onset Parkinson's.
11:32 AM - Sep 04, 2023
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Kathleen Rupnow
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thread 11/14
It is still unclear what causes Parkinson's, but scientists believe the disease usually results from a combination of genetic and environmental factors.

Parkinson's affects not only individuals, but also families, friends and care partners who come together to manage the realities of it.
01:59 PM - Sep 05, 2023
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Kathleen Rupnow
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thread 12/14
Currently there is no cure but there are treatments that can help. One of those treatments is Deep Brain Stimulation (DBS). DBS can reduce symptoms such as tremor, slowness of movement, stiffness, and dyskinesia (involuntary, dance-like movements). DBS is essentially a pacemaker for the brain.
06:41 PM - Sep 06, 2023
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Kathleen Rupnow
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thread 13/14
3 types of PD patients benefit from DBS

1. with uncontrollable tremor - medications have not been effective

2. with symptoms that respond to medications but experience severe motor fluctuations and dyskinesias

3. symptoms respond to higher/more frequent medication, but suffer side effects
07:15 PM - Sep 07, 2023
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Kathleen Rupnow
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thread 14/14
Tomorrow I'll be at the Parkinson Canada SuperWalk doing what I do (Volunteer Coordinator) in support of my son. We're at 60% of our goal so hoping that ticks up over the rest of today and this evening. My car is full and so is my ❤️ with gratitude to all who help out! Weather is looking good too!
04:12 PM - Sep 08, 2023
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Haruka (RELOCATED)
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In response to Kathleen Rupnow.
I have tremors and a number of those other symptoms listed there, and I’m supposed to see a motion specialist, but God knows when the referral will go through. Worrying about it is pretty awful.
03:36 PM - Sep 11, 2023
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Kathleen Rupnow
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In response to Haruka (RELOCATED).
Oh I'm sorry to hear this. It would be terribly worrying. There is also a condition called Essential Tremors that is sometimes mistaken for Parkinson's. It's what Katherine Hepburn had. At first, my son's specialist thought he had that. It took quite awhile for my son to get into the specialist.
03:44 PM - Sep 11, 2023
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Kathleen Rupnow
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In response to Haruka (RELOCATED).
We're in Ontario so he had to go to Toronto about 1 hour away. He had to have an MRI and blood work before he was diagnosed. Unfortunately Parkinson's is diagnosed by symptoms and ruling out everything else. There is no test for it yet.
03:48 PM - Sep 11, 2023
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Carol Lovely
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In response to Kathleen Rupnow.
My husband has Stage 4 Parkinson’s. No tremors but extreme tightness in all muscles making mostly all motor skill’s difficult to impossible. Swallowing is becoming problematic now. Horrible disease
09:05 PM - Aug 27, 2023
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Kathleen Rupnow
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In response to Carol Lovely.
Truly horrible! How long has he been diagnosed?
09:08 PM - Aug 27, 2023
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docmommaVA
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In response to Kathleen Rupnow.
The Executive Function issues are tremendous and start long before overt cognitive impairment.
09:03 PM - Aug 27, 2023
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Kathleen Rupnow
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In response to docmommaVA.
It's a rough go all around.
09:06 PM - Aug 27, 2023
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Carrie, like the movie
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In response to Kathleen Rupnow.
Thank you for sharing
08:22 PM - Aug 27, 2023
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Kathleen Rupnow
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In response to Carrie, like the movie.
You're welcome!
08:33 PM - Aug 27, 2023
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