“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”