November 1, 2016

The Five Stages of Parkinson's Disease and Me

Parkinson's disease (PD) strikes people in many different and idiosyncratic ways, leaving them to experience a broad range of symptoms. While those symptoms may be mild or severe, and while they may occur frequently or infrequently, PD appears to have five different stages. The time spent at each stage varies. And skipping stages – like moving from stage one right into stage three, for example -- is not uncommon.

Here are the five stages:

Stage one: During this initial phase of the disease, a person usually experiences mild symptoms, such as tremors or shaking in a limb. During this stage, friends and family can usually detect changes -- such as poor posture, loss of balance, or abnormal facial expressions.

I didn't have the tremor, and I still don't. The most noticeable clue was that my right arm would no longer swing freely. Observing this rigidity, my kids urged me to see a neurologist.

Stage two: In PD’s second stage, the person’s symptoms are bilateral -- affecting both limbs and both sides of the body. The person usually encounters problems walking or maintaining balance. Difficulty completing normal physical tasks becomes more apparent.

For me, the stiffness and rigidity mainly affected my right arm at the outset. While I now experience some malaise on my left side, the right arm remains the most affected limb.

Stage three: In stage three, symptoms can be rather severe, and may include the inability to walk straight or to stand. There is a noticeable slowing of physical movements during this stage.

Stage four: This stage of the disease is accompanied by severe symptoms. Walking may still be possible but is often limited. Rigidity and bradykinesia -- a slowing of movement -- are often visible. During this stage, most patients are unable to complete daily tasks, and usually cannot live on their own. The tremors or shakiness -- characteristic of the early stages of the disease -- may lessen or even disappear for unknown reasons.

Stage five: In the final stage of PD, the person is usually unable to take care of himself/herself and may not be able to stand or walk. A person at stage five usually requires constant one-on-one nursing care.

Where I am Now
I'd place myself at stage three. On one of my good days, I might even say stage two.

I was diagnosed with PD in September, 2009, so I'm now entering my eighth year. But since I haven't been afflicted with the typical tremor, my internist missed other clear signs that I had Parkinson's. For example, in early 2007 I complained about my right arm not swinging normally. In 2008, I complained about balance problems. My internist sent me to a physical therapist who -- I now realize -- quickly recognized that I had Parkinson's. At most sessions, he'd asked "Have you told your doctor about your right arm not swinging?"

I should have been diagnosed with PD in 2007 or 2008.

When I was first diagnosed, I contacted a neighborhood friend whose husband had died from Parkinson's a few years earlier. When I asked about the course of his illness, she told me he had lived for about ten years after his diagnosis. For the first five years, his disease was pretty easily managed, but after that things became increasingly difficult. For the last few years, he needed almost constant care.

I know how very idiosyncratic Parkinson's disease can be. I've seen, heard, and read many different reports on the progress of the disease with different individuals. But the most common pattern in these reports comes close to the journey my friend described: death often comes about ten years after diagnosis, and the final years are usually very difficult.

I hesitate to say the following for fear of jinxing myself, but here goes:

Thus far I'm still relatively comfortable someplace in stage three. My PD seems to be progressing more slowly than is typical... so far.

In future posts, I'll explore some things I believe have helped me slow down the progression of my Parkinson's disease..

5 comments:

Anna said...

John,

Maybe it's not PD. Only an autopsy is definitive. What you have is symptoms. Keep yourself open to all kinds of therapies, even if no-one is correlating them to PD. I wish I had done this more aggressively with/for my PD-labeled loved one.

All the best,

Anna

Anonymous said...

CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION…LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU…BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS….
STILL INTERESTED? READ ON!…(and no I am not selling anything!)

I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.

The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamet, though he had a lot of side effects from Mirapex and Artane.
I was busy teaching Science and although I lived close, found it tough to find the time to help out….though I’d often come over on the weekends.

Years 5-10 became tougher as you know…Sinamet was introduced in year 7 and really helped for a while…but in year 11 Dad got Aspiration Pneumonia…spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:

The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or “Sinamet”) you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET…INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.

I did this with my Dad and it really helped! Read on…

What does it mean? It means that when you take a tablet or 2 of Sinamet…the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias…

So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you’d take just a a little BEFORE you normally would…and the second just a little AFTER you normally would…about 15 minutes apart may work (AGAIN…ASK YOUR NEUROLOGIST FIRST!)

WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low….then the second tablet can later “Buoy” up the dose level, BUT avoiding a sharp spike.

My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended “off” periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart…
HUGE DRAMATIC IMPROVEMENT….70%-80% BETTER IN ALL AREAS

I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad…and shrugged their shoulders and said , “Well, 12 years with Parkinsons….and….what can you do?”

I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.

Though my father’s has it tough, at least this has eased his discomfort some…
REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING…IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET…PERHAPS…
Again Ask your Neurolgist…BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS…BE RELENTLESS….OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU’LL MAKE PROGRESS

Good luck…I hope this helps someone….in the name of my Dad…Ed
Love ya Dad…

Steve

Anonymous said...

What a fantastic son you are to take such an interest in your father's health!

Carlo S. said...

Hi Steve,
Thank you for your advise and congratulation for your results.
May I ask you which dosage of sinemet is your father taking?
I.e. 100+10, 100+25 or 200+50 mg
Thank you,
Carlo

Carlo S. said...

It seems that comment from Laura Williams has been removed by Admin. Well done.

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