Tuesday, December 7, 2010

Isolation and Depression and Parkinson's Disease

Another Try as A Year Goes Bye

It’s been about a year since my bout with dehydration. I managed to get through that horror with lots of prodding and insight from my wife/caregiver.

The Great Recession and my Parkinson's has drastically cut our income, so I no longer get a massage every week or go to the Nautilus room at the aqua center - that originally stopped with the dehydration. Because I could barely walk down the hall, let alone attend either exercise or massage, I simply could not attend. That was true for going to the local PD support group as well. After that the financial limitations became a harsh reality.

I’ve tried to keep up with exercise using my hand weights and cardio equiment at home. There are also chair exercises which we do to stretch, relax and use a few different muscles. I have never been a well-motivated person for exercise but the social aspect of the Center seemed to help me exercise regularly. Now I have to depend upon my own motivation to get me going. 
Harry with the brothers a few years ago

You’d think that knowing it can help me live better and possibly longer would be enough but it isn’t. Sometimes I feel I have not left the second floor of my house for months - simply sitting at my computer without venturing out or seeing another human being besides my wife. The dogs have become my best buddies.next to what-ever hallucinations my brain has cooked up for me. Both dogs spend a lot of time near me...hoping for a treat but content to just be close. Blakey, the black cat, sits on my printer; while Mongo, the mama’s cat, still sleeps on my wife’s CRT.

I watch what’s happening to this country and I worry and despair. How can Congress go on vacation while millions of families have no wage earners? Politicians and even those people on the news and financial programs seem to be concerned with those who make $250000 rather than those who make $0.00. They give lip service to the rest but they have jobs, they are not on the ground floor. They don’t get it. I get the impression that they feel chronically ill people are slackers.

In the new Congress the conservatives want to cut spending when the economic situation demands that we increase it. We need to get out of Afghanistan and use the savings here. We need to leave scientists to do science instead of leaving it to ministers from bible colleges, online degrees or self-proclaimed. Could we cure PD sooner if we didn’t have one hand tied behind our backs?

Mongo and Blakey ready for winter
When I first read Steve's words, I could see how damaging both depression and isolation can be for a PwP.  Even before we recognized the dehydration, Steve was already shutting down the concept of straying too far from home.  No trips to Lake Erie to watch the sunset.  No shopping, no trips to the park to walk the dogs together. That was the fear setting in.  No matter what I suggested, the answer was, "Not today." 
We'll get him back to the therapy center once I'm sure that he will put in 100%.  You can't just go through the motions when exercising.  It has to be felt throughout the body And that only happens when you are there working for yourself.  In the meanwhile he is exercising at home with reminders.
He's making good progress just by getting the words onto the screen.  And by reminding me that we are running out of dog treats.  He's beginning to feel better about himself.
He has been helped by a few changes to his PD pill/supplement regimen.
Steve has now attended two monthly support group sessions and has walked with us at the park.  He's getting out there again.

Depression plays a huge part in Parkinson's disease.  Obviously as a significant symptom of PD, depression can be caused by chemical imbalance in the body.  But it is exacerbated by the very real saddness at the loss of losing ones body and self.  Moreover, the old definition of depression being anger turned inward still applies.

The "me" with whom a person identifies himself, begins to change so slowly at first that the loss of "me" is barely noticed and perhaps there is compensation in character - although sometimes defensive in nature.  Eventually those initial changes accelerate to the point where each day begins with a profound sense of loss whether it is the difficulty one has in getting out of bed and making it to the bathroom safely or the inability to perform or even comprehend tasks  that were at one time almost second nature.

The hardest thing for related caregivers is to reassure their loved ones that they are still the same person when the visible indicators tell another story.  Here's the thing, that person is still in there and it is often possible to encourage and lovingly support but usually not without outside help.  In the case of depression, seek help for both parties. 

Here's one important tip:  make sure that both the person with PD and the caregiver have regular outside contact.  Whether it is daily phone chats with family members who live elsewhere or visits with old friends, it is imperative that both parties know that they are loved.  Don't let the world become so small that it swallows you.

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