Managing PD Medications - One Solution

Once Parkinson’s disease (PD) has to progressed to a certain point, PD patients and their caregivers often find that managing and balancing PD medications becomes a difficult task. It is sort of like trying to hit a moving target – because as the disease progresses, the combination and dosage of PD medication (sometimes called a “cocktail”) needs to be adjusted in-parallel. Just about the time you think you have the PD medication figured out, the disease has progressed or symptoms have changed.

A member of our support group sent me some email on this topic, and I thought that their comments regarding how they manage taking PD medications might be of use for others with “similar” situations. I am "not" suggesting that everyone should use this method of managing PD medications, but their solution is something to think about. With their permission I am sharing this excerpt from their email.

Because they don’t feel comfortable using their real names, I have changed their names to respect their privacy.

Beginning of email extract…

“I have been setting up Jack's medicines for him. He was reluctant, but is very agreeable to it now. In the past I have only done this when he has been in his dark holes, or having his surgeries. A couple of weeks ago, it just seemed everything was not as good as I thought it should be and we were having problems between us because of it. Overall, everything has been much smoother now. I set them up for the week, he checks them to be sure I am right, then he is in charge of what time he wants to take each dose and if I have concerns I glance at his case to see if he is on track. (Before, I never knew for sure what was in the case to be sure of what I was observing) Yes, he has found some errors on my part a couple of times! I really feel like he may have dropped pills in the wrong compartment resulting in taking too much at one dose and not enough at another! I have found pills on the floor and never knew if he was aware it dropped or thought it was in his case. This way, we both know what is in the case is accurate and when I see side effects, I can better determine if it may be medicine related or otherwise. Because of his coordination, he was setting up his for only one day at a time and of course he was more apt to make a mistake because of rushing. The first couple of days, I hid the stash so I would know he wasn't getting extra. He now knows where I keep the stash but has agreed to let me know if he takes anything extra. Since the stash is not in his sight all day, he is less tempted to grab an extra Sinemet and has done a better job taking his doses on a regular basis. Whenever he would take an extra Sinemet, his body would forget it was time for his regular dose... thus everything was off kilter! The main problem is since I wouldn't know exactly what he was taking I was misinterpreting the side effects. For now, our whole life has been more smoother! When I see the Dyskinesia or freezing, I am better able to judge where he is in his cycle of doses to know whether there is real concern or not. Many times over the years, I would only find out a few days after when he had decided to try living without a certain drug or adding extra... and that was after stressing why his medicine was no longer working properly... only to find out he had been making adjustments without my knowledge! I try to remind him that only he knows how he feels on the inside, while I can only judge how he looks on the outside and it takes both of us to fine tune his medicine. As a result, we have actually cut back on his Ativan... but we both have been on board (along with the doctor) to know when enough is enough!”

End of email extract…

Sitting down to the Parkinson Round Table - The Diagnosis

Please pull up a chair to our round table -- We will be discussing many Parkinson related topics, and I will be sharing my story about living with Parkinson's disease (PD). Perhaps by sharing my PD story, others will join the conversation and share their own stories. Families who have a newly diagnosed PD patient may be helped by hearing from the PD community -and- Families who have been living with PD for a while may offer support, tips, techniques, and solutions to living with PD problems.

Short version "About Us" -- My husband's name is CW (he has PD). Yes, CW just goes by his initials. I think it is a "Southern" thing to use just initials for a name. CW has a degree in Electrical Engineering. My name is Dottie ( the care partner/caregiver). We are both retired research engineers. We are both "Type A's" and "Control Freaks". To make any type of decision, we want as much data as possible - no matter how small (like buying groceries) or large (like buying a house or buying a car) the decision is.

The diagnosis -- I started noticing that CW was having little difficulties here and there with dexterity of his hands, and he was exhibiting some "weird / unusual" symptoms. Sometimes the area around his mouth would look like when a cat or dog sniffs at you (picture how you look when you scrunch up your nose and your upper lip scrunches too). At night, while he was sleeping, CW would kick me from all the way across our king-size bed to my side of the bed; and he would not remember kicking me, but I had the bruises to prove it. CW's handwriting was getting smaller. There were other subtle and not so subtle changes; and there were more and more changes, which when combined they created enough information that something wasn't quite right.

CW and I hadn't said anything to each other about his changes, until one day at breakfast our conversation went sort of like this.

Dottie - "CW, have you noticed that you do ..." And then I mentioned the different symptoms I had observed.

CW - "I didn't want to say anything to you, because I wasn't sure that it was happening to me."

We compared notes with each other, and we started keeping a log and collecting data of incidents (remember we are engineers). Together we decided that something was definitely going on, but we didn't know what that "something" was.

For many months CW made visits to many types of doctors. He saw internists, ENTs, cardiologists, and other types of "...ogists" doctors. There were many different battery of tests - CW's eyes were checked, X-rays, MRI's, CAT scans, blood tests, urine tests, etc., etc. I don't think there was any part of CW's body that wasn't examined. We heard a lot of "We don't think it is ..." -or- "Perhaps you should see Doctor ..."-or- "We aren't sure, but we think it might possibly be ..." CW and I felt like we were chasing our tails. We were getting very stressed hunting for the diagnosis, and CW was slowly getting worse. Was the stress causing the disease to progress? - Perhaps.

The worst part of all of this was not knowing what "it" was. We were thinking and imagining the very worse disease possible. Finally, our family doctor recommended that CW see a neurologist our doctor knew of. Even though CW had already been to see another neurologist, CW went to the recommended one for another opinion.

I still remember that day. I remember what I wore - what CW wore - how the doctor looked - and the tone & sound of the neurologist's voice.

Neurologist - "I have some good news and some bad news." It seemed like there was a very long pause of pregnant silence. "The good news is that you have Parkinson's disease; and the bad news is that you have Parkinson's disease."

CW and I looked at each other, shocked, not knowing what to say. There was disbelief. I just knew that the neurologist had to be making a very big mistake about his diagnosis. Even though we had talked about and anticipated the very worse disease, I never expected to hear the word "Parkinson's". I felt like I was going to faint and be sick at the same time.

CW - "Are you sure?"

Neurologist - "Not 100%. You see, Parkinson's is a very difficult disease to diagnose. There is no routine test (i.e., X-ray or blood test) I can do that will 100% can confirm Parkinson's disease. We would have to examine a slice of your brain under the microscope to determine if you had Parkinson's; but then if we did that, you would have to be dead to perform this type of biopsy test."

CW - "Well what data and/or criteria are you using to determine that I have Parkinson's? (CW still behaves like an engineer!)

Neurologist - "None. The conventional method we neurologists use for diagnosis of Parkinson's includes:

• The presence of majority of the four primary symptoms - resting tremor, or trembling; muscle rigidity or stiffness of the limbs; balance problems; and gradual loss of spontaneous movement (slowness of movement)
  
  
• The absence of other neurological signs upon examination (a process of elimination)
  

• Responsiveness to Parkinson's medications, such as levodopa"

CW - Silence

Dottie - Silence

Neurologist - "Based upon the fact that you exhibit a majority of the four primary symptoms of Parkinson's, I think that you should try to see if you have some responsiveness to a Parkinson's medication, such as levodopa. Do you want to try that?"

CW - "Will the medication harm me?" -and- "What have I got to lose?"

Neurologist - "No it won't harm you." -and- "You have nothing to lose. You may learn what you do have, and we can start treating it."

CW was given a sample of a form of levodopa. As a result, when he took the medication, some of his weird and strange symptoms went away. And thus the diagnosis was made. Much to the credit of CW's neurologist, he did suggest that CW get a second opinion (which is always a good thing to do).

On one hand, it was a big relief to have the name of a disease that we could associate to CW's symptoms; but on the other hand, hearing the diagnosis made both of us very afraid. We thought we knew what Parkinson's was, but we really didn't.

I don't know what it would be like to be in CW's shoes and be told - "You have Parkinson's". To this day, I have no idea what CW really felt like when he learned that he had Parkinson's. I know that I cried for many days - I would get in the shower and cry so that CW wouldn't see me crying. I got depressed. Some days we didn't know what to say to each other about the diagnosis; so silence on the Parkinson's topic for those days was OK.

At some point we realized that we had to take charge; and we both started researching as much as possible to learn about Parkinson's. The internet was a big help, but we knew to use it with caution. We read books wherever we could find them. We almost became obsessive in trying to learn as much as we could about the disease. Some days it was hard to read some of the information, because it was frankly scary. Other days, I felt like - OK, I can deal with this. CW and I discussed how we were going to tell our family, friends, neighbors... (how we did this will be a topic for another blog posting). We both went through such a roller coaster of emotions. We now had this Great BIG Elephant in our life!

Note that I often use the word "we" in my posting. When a patient is diagnosed with Parkinson's, it "absolutely" becomes a family affair.

And so, that's how our/my journey of living with Parkinson's began. At the time this journey started, CW and I did not know how much his having Parkinson's would change our lives. Nor did we know about the amazing and wonderful people we would meet because of Parkinson's.