CAREGIVING: AFTER THE ORIGINAL DIAGNOSIS

I am digressing from our ongoing story of Wally’s experience with Parkinson’s disease and going back to the initial period when you and your loved one first learn he or she has the disease. This came to mind when a dear friend’s husband was recently diagnosed with PD.

She called me because they had been given the names of three drugs their neurologist will likely prescribe, and one of the comments the neurologist made had her concerned. They were warned that once he started to take the drugs, he could be irritable. That immediately frightened her because of her heart condition. Her tolerance level as a caregiver was compromised. She was already worn out dealing with his shifting moods.

First off, I’m not sure why the neurologist focused on this one side effect more so than any other. Every person’s metabolism is different. No one responds the same way as another. Plus, for some, there are preconditions such as rheumatism, arthritis or heart, for which they are already being treated, and the addition of Parkinson’s drugs complicates the person’s response. In some situations, serious medical problems can result if taken together with other drugs, including cough medicines or natural/herbal supplements. If a person has cancer, for instance, mixing Parkinson’s drugs with chemo therapy could be deadly. One of the agonists, selegiline, could escalate the progression of an untreated cancer or, on its own, actually trigger melanoma.

For some strange reason, a vast number of people afflicted with Parkinson’s are highly intelligent, multi-taskers. One of their frustrations is discovering they can’t juggle the variety of activities or thinking levels they once did. They become irritable because they are frustrated with themselves. They don’t understand what has changed, why they can’t cope the same as they always have.

Unfortunately, the onset of depression is also another product of Parkinson’s, not just a result. The person you love may suddenly become reclusive. Even going to see a movie becomes a big deal. Staying home is safe and unchallenging. I recall Wally would tell me to go with our grandchildren to the theatre. He didn’t want to go with us. “Someone has to stay home and look after Yogi.”

The dog needed a babysitter. Of course I was flabbergasted.

Once the diagnosis is made, then many things that may be irritating you about the changes in your loved one begin to make sense. I learned that change became threatening to Wally so if I told him about a social engagement or our going out somewhere in advance, he would fret. By the time we were to go, he would have himself so worked up the worst scenario was bound to happen. I learned not to tell him of certain things in advance because, taken by surprise, he would handle it with no problem.

With my friend, she and her husband are overwhelmed with the diagnosis, never mind trying to absorb all the information and implications of side effects. My advice to her and to you is:

1. The person who has the most knowledge about Parkinson’s drugs is your druggist. Make your druggist your best friend. Before the person with PD takes the first pill, make sure you have discussed all pre-existing medical conditions with your druggist to double check that other meds taken with the Parkinson’s won’t set off worse problems. Also make sure that the dosages aren’t too high. On any new drug, people have to build up their acceptance level.

2. Reduce the protein in their daily diet because it interferes with the effectiveness of the L-dopa (Sinemet) or dopamine replacement drug. It doesn’t mean you cut things such as meat out of their meals. It means reduce serving size and increase vegetables and fruits.

3. Encourage the person to eat one bar of chocolate per day, and the darker the chocolate the better. In fact, the person with PD may crave chocolate. Why? Endorphins, which give a feeling of pleasure, and serotonin, which acts as an anti-depressant, are naturally found in chocolate. They work together with the dopamine replacement to offset feelings of depression. I understand that drinking milk at the same time as you eat chocolate cancels the good effect of the chocolate. For people who are allergic to cocoa, this suggestion won’t work. Instead, they may suffer terrible migraine headaches.

4. Take one day at a time. Eventually, the person with PD will regain confidence in tackling more social events, but until then, avoid their fretting over all the imagined possibilities by telling them on a need-to-know basis.

5. Expect that some of the problems experienced before the diagnosis, such as irritability or depression, will actually improve or smooth out once the person starts on their daily pill regime. Yet, be aware that any change that upsets the person, such as dizziness, excessive sleepiness, drop in blood pressure, imagined vision or violent nightmare, can be side effects and must be reported to the neurologist immediately.

6. To prevent confusion in administering the pill schedule (and it can be quite a chore managing what pills are taken when), have the pharmacist prepare the pill dosages in bubble packets. Each one is labeled with the time the pills are to be taken, the name of the pill contained along with the matching description and the individual pill amount.

7. Exercise is pandemount to godliness for people with Parkinson's. To prevent their muscles from stiffening they need to exercise every day. Expect resistance to this suggestion, but those who follow it actually help delay progression of the disease. For those couch potatoes you can't motivate to exercise, then the alternative is to make sure they get professional massages as many times a week as you can afford.

REFERENCES:
Selegiline:
http://en.wikipedia.org/wiki/Selegiline
http://www.drugs.com/pro/selegiline-tablets.html
http://www.rxlist.com/eldepryl-drug.htm 
Risk of melanoma when taking Selegiline:
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697046.html
http://www.drugs.com/ppa/selegiline-hydrochloride-l-deprenyl.html
Chocolate:
http://longevity.about.com/od/lifelongnutrition/p/chocolate.htm