Team Parkinson’s – The Captains, The Players, The Benchsitters, and The Fans

Whether you have had Parkinson’s disease for awhile, have been newly diagnosed, have been diagnosed with Young Onset Parkinson’s disease, etc., sooner or later you’re going to want to talk to someone about it who really understands – someone who’s been there already on the journey with this Little Monster.
 
A support group can be your lifeline because it is like a team. If you think about it, the best teams are those that work together and are not made up of players who seek to go solo and feel they can do it all on their own. Like the old adage, “There’s no “I” in TEAM.”
Every team has a coach. Someone who knows the game well. Someone who has played the game before. Maybe even already coached other teams in the past. Someone who can show you the best moves. Show you areas you can improve.
Every team has a captain – a peer who leads, can keep things going, encourage the team to do their best and play to win even though they themselves are playing the same game, win or lose. They have a winning attitude. They play to win.
And in order for the team to perform well, each player needs to be ‘in the game’. Just because you’re part of the team in number, doesn’t necessarily mean you’re ‘part of the team’. Bench sitters don’t contribute a whole lot in terms of playing the game, but they can. Instead of sitting in a puddle of pity or with an attitude of anger, they can be cheering on the others who are able to play hard this time around. They can have a cup of cold water ready for the next player who finds himself needing to sit on the bench a while. They can support and encourage their teams mates making their role invaluable.
 
Of course teams are made up of the players themselves. Some seem to play in every meet, game, match and the like. They appear “better” but  they are not more valuable for we all contribute in some way, in some capacity for the win – the cure.
Players are ‘equal’. The quarterback can appear to be the star but there’s no way he’s going to make it to the end zone without the support and assistance of the rest of his team. A pitcher doesn’t play alone in the game of baseball. Even sports that appear to be played ‘solo’ – tennis, marathons, boxing, etc – are all part of a team of some sort.
Players are constantly working together, fighting together for that win. Maybe one player will be able to run the length of the court today and even make. That winning basket, but tomorrow they may be benched due to an ailment or injury.
If you’re a player on Team PD, still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now. They may have a lousy attitude, or have a positive one. Either way, they are still part of this team  and in great need of some encouraging words. 
 
And remember, for every team, there are fans. They come out, sit through the tough plays and cheer on the sidelines. They are there in the rain, the cold and the biting wind. No matter the weather, they still show up for ‘their’ team. On Team PD, fans can be friends, family, caregivers.

Whatever part of the PD team you’re in, you’re not playing in this lifelong game alone. Get into a support group, find a ‘coach’, a ‘captain’, someone who’s been there and can encourage you in your game. Remember… You are not alone.

Top Regrets at the End of Life

There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

Ware writes of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. “When questioned about any regrets they had or anything they would do differently,” she says, “common themes surfaced again and again.”

Here are the top five regrets of the dying, as witnessed by Ware:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.”

2. I wish I hadn’t worked so hard.

“This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.”

3. I wish I’d had the courage to express my feelings.

“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.”

4. I wish I had stayed in touch with my friends.

“Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.”

5. I wish that I had let myself be happier.

“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.”

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

The Thing About Nurses

imageYou’ve most likely heard about it.

She comes out from behind the curtain. Will she tap dance? Sing opera? Play music on the rims of water-filled crystal glasses?

No, one of this years Miss America comes from behind the curtain dressed in scrubs and donning a stethoscope around her neck. She’s a nurse and she gives a little bit of insight as to what that entails.

Nursing is not your usual talent that is seen or heard at Miss America pageants, but it is a talent. And a gift. Not just anyone has the talent, gift, or guts to pull off that job. But, members of The View, an afternoon gossip show made up of women, felt inclined to mock Miss Colorado for her presentation of being a nurse.

It’s all over the news. Apologies and excuses are being made. Back-pedaling is in full speed, but the damage has been done. Members of The View have shown their realistic level of intelligence while nurses of the world united and demanded an apology. And rightfully so.

Reading up on Kelley Johnson (Miss Colorado), I found she graduated this past spring with a Bachelor of Science degree in nursing from Grand View University and was also valedictorian of her nursing class. Not a simple feat.

View members mocked Johnson for her presentation, asking themselves why Johnson would be wearing a doctor’s stethoscope. I’ll just start with that…

I have had three brain surgeries in the past three years. Between doctor visits in preparation for those surgeries, pre-ops, surgical nurses, before surgery and  after surgery  nurses – I have seen and been cared for by several nurses, male and mostly, female.

They have held my hand, wiped my brow and covered me with warm blankets. They have inserted needles, changed IV bags, removed stitches. They have cleaned wounds, emptied urnals, freshened soiled linens. They have provided prompt medication, explained procedures, answered urgent calls.

They always wore a stethoscope. And a uniform. And shoes.

They all had a four year degree or they wouldn’t have been able to do what they do. Not all were valedictorians. That is a gift. A talent. An exception. A feat to be admired and honored – certainly not laughed at.

They are there at the doctors beck and call, carrying out his orders. They put the motion to the process, providing the care to get the patient back to optimal health. They are there from beginning to end – the first to greet the patient, the last to see them out the door.

They are the ones to go through the discharge cautions and warnings, tips and transitions, explaining the what’s, why’s, and therefore’s. They are cautious yet capable. They are merciful yet tough.

Talent is defined as a special natural ability or aptitude, a power of mind or body given to a person for use or improvement. It is often defined as a gift.

You have to have a gift for changing bloody, infected bandages, day in and day out. For bathing strangers and assisting someone with a bed urnal. You just don’t sign up for those tasks  unless you feel called to serve in that capacity.

A nurse, specifically a RN (registered nurse), must have a four year  degree from an accredted college. A firefighter or an emergency medical technician don’t even need a two year degree and yet we trust them unquestionably with our lives. They get thanked, praised, and commended – deservely so. But how often do you see banners posted, thanking nurses for their services after a disaster or tragedy and hospitals are inundated with an onslaught of patients? Just sayin’.

Thank you, The View, for expressing your thoughts and opinions so that we were able to bring attention to where attention is long overdue and give heartfelt thanks to the nurses who pull long, hard hours to assist in keeping us, and those we love, alive.