Lies that Parkinson's Disease Told Me

In addition to the blogging I do here, I do  a monthly post for the Northwest Parkinson's Disease Foundation. From time to time I re-post work from there here. This is a favorite from December 2016. It's called Lies That Parkinson's Disease Told me.



Yes, I should have known better than to trust Parkinson’s Disease. PD is not our friend. It spends its time and energy devising ways to mess us up. There seems to be no part of the human experience beyond the reach of this tireless troublemaker. I know this.  So I should have been on my guard. But I believed when it whispered the following lies in my ear.

1.) The good part of your life is over. It’s time to get up and start the bad part. 

While it’s certainly more difficult, expensive, and mentally and physically painful to live with Parkinson's, the good part of my life did not end with my diagnosis.  Balancing that formidable list of downsides is the benefit I have reaped as a volunteer in the PD community here in Anchorage. Also, more than a counterbalance is the love and support that have come from family and friends. Over time, it became apparent the everyday joys of life may become rarer, but don’t vanish because of Parkinson's Disease. Of course there are good days and bad days, but guess what. It was that way before you got sick, too. (And, yes, Parkinson’s stole that “Good part of your life over, bad part begins” line from the movie “Broadcast News”. So PD is a liar and a thief.)

2.) Stay away from support groups. They are full of scary, sad people and will depress you.

I bought this lie without hesitation. And OK, there is something scary about seeing people confined to wheelchairs, using walkers and shaking like aspen leaves. At first. But just as “to  understand is to forgive” to get to know the person behind the tremor is to lose fear of them and their disorder. And there are people in our support group who handle the disease with courage and grace. These patients light the way to dealing with PD with dignity. You can deal with it too. Just follow their lead. Another less obvious benefit is the chance to witness those who don’t handle the disease so well. As the saying has it, “Every man is your teacher” You may learn from the graceless how best not to approach the disease as much as you learn from the graceful who do it well.


3.) Your balance will go bad. There is nothing you can do about it.

I certainly have lost a good bit of my ability to balance. And freezing as I carry in the groceries has led to frightening (and painful) falls. Furthermore, I expect I will fall more frequently in the future. But it has been shown that there is something you can do to mitigate the loss of balance: exercise! Most specifically, it has been found that those who do yoga and Tai Chi may improve their baseline balance ability significantly. This tends to confirm a suspicion of mine that some of the fallout of Parkinson’s comes from disuse, rather than disease. An essential part of coping with this motion disorder is to keep moving.

But what was worse than the lies Parkinson’s told me? The lies I whispered to myself. The lie that life with a chronic, disabling disease was not worth living. The lie that I am somehow less of a person because I am ill. To live is to be in transit somewhere along the spectrum that goes from good health to bad health. All of us will sooner later or later find ourselves at the far end of that journey. In our ultimate frailty,  we are all equal. The most important things in life, we still all share in common.

Caregiving Teleheath Conference, A Quick Rundown

Finally made it back to a Telehealth conference. These come to us once per month, and are broadcast from a room in Providence hospital that has an interactive interface allowing us to see preseentations from various Doctors, therapists etc. Then we ask them questions. Provided, of course that we can speak loud and clearly enough. Today's session was on caregivng. I took notes because I can't help it, I'm a compulsive note taker. Since I got them, I'll pass them along.

Our presenter, Dr. Dan Burdick, started off by talking about "caregiver burden" which essentially means all the stress they feel that falls to (or on) them due to the fact they are the one primarily responsible for watching over a person with a chronic disease.

Dr. Burdick said that a caregiver's role needn't be burdensome, but that there are a number of factors that tend to make it so. Complications from the patient such as age, disease stage, and depression made things tougher for the caregiver.

Caregivers pointed to things like grocery shopping and transporting their charges as primary contributors to their sense of burden. However the biggest predictor of caregiver burden was depression suffered by the caregiver. Dr. Burdick provided a URL for  people wishing to assess their depression, alas, apparently I copied it down wrong. But don't get all bummed out about it, I found this screener for depression courtesy of the Mayo Clinic.

What can be done to help caregivers bear their loads? Dr. Burdick came up with the mnemonic "EARs", which stands for  Education, Assistance, and Resources.

Education: Learn about PD, its meds and their side effects. Learn how to be a patient advocate. Learn the workarounds for various problems that can be fund through physical and occupational therapy.

Assistance: Build a team of family and friends to pitch in. Find people who will help with shopping or housework. This will help allay another concern, social isolation.

Resources: Support groups (our Anchorage group is fortunate to have a veteran caregiver, Betty Berry to help you with your caregiving questions.) The Northwest Parkinson's foundation has various services to help caregivers including a pamphlet entitled "Who takes care of the Caregivers? Here in Alaska one can also go to the Alaska Department of Health and Social Services for help.

For things a caregiver can do for themselves, Dr. Burdick suggested that caregivers be attuned to their emotional state, and to set aside time for themselves and for social contact. This is not selfish, it's only human. Dr. Burdick said that the people who know how to ask for help, actually last longer than those who just blunder alone along their weary way.

Finally it was noted  that the new roles of "Caregiver" and "patient" become superimposed over the old roles such as husband and wife, parent and child. This can lead to problems as new realities make demands on the old relationship.  One way of coping with this is to keep up  parts of your old roles together- get out for a date or go for a walk.

When the question and answer time came I asked what the patient could do to help keep the caregiver going. One answer: Keep doing the things that are your responsibility as long as you can do them. If you were always the one who made the bed, don't drop this simply because of a diagnosis. If you still can do it, why would you stop? This isn't rocket science, people. Unless you actually ARE a rocket scientist. In which case, continue as long as possible.

    ...

Teleheath Conferences: Telehealth interactive seminars take place at Providence hospital the second Monday of each month, 1:00-2:00 pm in their oncology building off Piper st. Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.