Stages and Progression of Parkinson’s Disease

One of my blog readers asked me the following question about the stages of Parkinson‘s Disease (PD).

“We just found out my mom has PD and have had trouble finding the 'stages' of PD we keep hearing about. Is there anywhere we can find them?”

My Response:

The three primary measures of the stages and progression of PD are the Hoehn and Yahr Staging of Parkinson’s Disease, the Unified Parkinson Disease Rating Scale, and the Schwab and England Activities of Daily Living. They can be found at the Parkinson Association of the Rockies website at: http://www.parkinsonrockies.org/progression.html

If you are asking about when your mom might die, that’s an entirely different matter. I could be flippant and say that it is just between your mom and God or that your mom will die with PD and not from PD.

Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD. Until I’m more comfortable with completing this blog posting, you’ll need to talk to your mom's neurologist and/or do your own research on this matter. Or perhaps this is one of life's mysteries.

Comments

[Deanna]

I have 13/31 of teh symptoms listed. I went in & had a general test for Parkinsons a couple years ago & the Dr. said I did not have it but if i wanted to have the more extensive testing done, that would be my choice but i should check with my insurance company. I checked with them & the tests would cost me over a $1,000. I have been a single mother of 2 for the last 15 years. I do nto ahev that kind of money to ahve further testing. is there anything else I can do?

[Kate Kelsall]

Hi Deanna,

These are the classic four signs and symptoms of Parkinson's Disease:

Resting tremor on one side of the body

Generalized slowness of movement (bradykinesia)

Stiffness of limbs (rigidity)

Gait or balance problems (postural dysfunction)

If you have them, I would push your PCP to refer you to a neurologist, particularly a movement disorder specialist, for a proper diagnosis. Many people with Parkinson's are misdiagnosed or undiagnosed for many years.

What diagnosis does your PCP think you have?

Good luck,
Kate

[Rachelle Irish]

My grandpa was diagnosed with Parkinson's about a year and a half ago. His family Dr. was giving him the wrong med (Alzheimer's med.) He finally got the right med. about 8 months ago. His body can only handle the med.'s at half strength which does not help fully. He has been sent to the hospital twice in the last 6 months. Once for falling and fracturing some vertebrae, balance was off, missed his chair. The last time was due to severe constipation. At the hospital they did not get him up out of bed over the course of four days. He was then sent to a rehab center where he currently is. He has slight dementia, very quite talking/mumble, dazed look at times, and losing a lot of weight 40 lb.s since the first of the year. No one has explained where he is at in his disease, what the next stage to be looking for, or how far he is from the last stage. I would appreciate any help on what is going on.

Thanks,
Rachelle

[Kate Kelsall]

Rachelle,

It must be so sad to see your grandpa deteriorating with Parkinson's.

From your description of him, he seems to be in Stage Five, the final stage, of this disease. See:

http://katekelsall.typepad.com/my_weblog/2009/08/dying-with-parkinsons.html

Has your family got Hospice involved? They do a wonderful job of helping the family through the process of death of a loved one.

All the best,
Kate

[Michael]

What can we expect now? My father has had PD for 37years and I just found out that he has Lewy Body syndrome. He has lost weight but is still able to eat and drink with full ADL assistance. He is able to walk but spends most of his time in bed or a chair. Hospice is involved and my family was told he only has months to live. There are no sings of infection or distress. I understand he is dying but what can we watch for that will help us help him?

[Kate Kelsall]

Hi Michael,

Your father, you and your family have been through it all with your father with PD for so many years and now a diagnosis of LBD. I am glad that you called in Hospice who are experts on the business of dying with dignity.

The only regret that I had about my mother's situation with living and dying with PD and LBD is that I hadn't read the book, "The Final Act of Living" by Barbara Karnes, RN. This book provides tools to help with approaching death and is available on Amazon.

All the best to you, Michael, in this difficult time.

Kate Kelsall