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I’m reviewing here information that I already knew about, concerning the five stages of PD as defined in 1967 by Hoehn and Yahr. I’m not sure how my doctors would rate me, as we’ve never talked about this rating scale, but I’m hoping that they’d say I was in Stage 3, which is where I’d like to hover for the next few years; rather, decades. What’s driving me to review the five stages today are the fears that the looming Stage 4 and Stage 5 engender.
Thanks to the Parkinson’s Foundation, which provided me with the text, which I’ll copy and paste below, including their links for more info. I’ll also add my own comments, and links, in italics.
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Pre-Stage 1:
There are many indicators that you may have PD way before you get your official diagnosis. Known as the “prodromal stage,” this period can last for ten years or more. Common symptoms include loss of smell, constipation, anxiety, depression, and acting out your dreams while you’re still asleep. For a complete list, visit this page in my blog: Finding Out Early.
Stage 1:
During this initial stage, the person has mild symptoms that generally do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture, walking and facial expressions occur.
I believe that there’s more than the issues mentioned above. Examples: insomnia, drooling, restless leg syndrome. Here’s a more complete list, which includes things that affect Parkies in later stages, too.
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Stage 2:
Symptoms start getting worse. Tremor, rigidity and other movement symptoms affect both sides of the body or the midline (such as the neck and the trunk). Walking problems and poor posture may be apparent. The person is able to live alone, but daily tasks are more difficult and lengthier.
To understand better what it’s like to have Parkinson’s disease (and how to explain it to your friends), check out this post titled “What It’s Like Having Parkinson’s.” I compiled this list with about a dozen Parkies before the 2012 World Parkinson Congress in 2012 Portland, Oregon. Some 5000 people clicked on the post in the weeks leading up to the Congress.
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Stage 3
Considered mid-stage, loss of balance (such as unsteadiness as the person turns or when he/she is pushed from standing) is the hallmark. Falls are more common. Motor symptoms continue to worsen. Functionally, the person is somewhat restricted in his/her daily activities now, but is still physically capable of leading an independent life. Disability is mild to moderate at this stage.
Fortunately, I have had only one fall since I was diagnosed with PD. I also exercised furiously to slow the symptoms’ advancement. Here’s a New York Times article on exercising: Exercise Can Be a Boon to People with Parkinson’s Disease. And click here to review much of my career as a competitive swimmer, up to a few years ago, when dysphagia forced me to stop swimming. Now I go to the gym 5 days a week (90 minutes a session) to lift weights and work out on a treadmill and elliptical trainer.
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Stage 4
At this point, symptoms are fully developed and severely disabling. The person is still able to walk and stand without assistance, but may need to ambulate with a cane/walker for safety. The person needs significant help with activities of daily living and is unable to live alone.
This sounds scary, and it’s not even the final stage, which occurs when it’s time to enroll me in hospice. It reminds me of another NY Times article written by a man who had ALS. Here’s a section of it:
If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.
I’d rather die.
At which point he discusses his plans to commit suicide before the disease progresses much farther. “I have found the way” to off himself, he says. “Not a gun. A way that’s quiet and calm.”
For this reason, once I’m sure I’m in Stage 4, I’ll start contacting and communicating with organizations such as Death with Dignity and other groups who assist with Medical Aid in Dying.
I’ll also review again and again this article: The Total Enjoyment of Life: A Framework for Exploring and Supporting the Positive in Palliative Care, by Benzi Kluger and Robert Arnold.
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Stage 5
This is the most advanced and debilitating stage. Stiffness in the legs may make it impossible to stand or walk. The person is bedridden or confined to a wheelchair unless aided. Around-the-clock care is required for all activities.
According to one researcher, these are the three most likely ways you’ll die with PD:
- You fall and fracture your hip or another important bone.
- You end up with aspiration pneumonia because you inhale food or liquid into your lungs when you swallow.
- You develop a urinary tract infection (UTI), which, according to the National Library of Medicine, “is a common precipitant of acute neurological deterioration in patients with Parkinson’s disease (PD) and a leading cause of delirium, functional decline, falls, and hospitalization… Sepsis due to UTI is a feared consequence of untreated or undertreated UTI and a leading cause of morbidity in PD.”
While there are many podcasts and YouTube videos concerning this last stage, I prefer to watch again and again Parkinson’s and End of Life: An Honest Conversation.
