Friday, January 22, 2010

A - Z for People with Parkinson's

Simple but memorable.  The following is based on a talk I gave at the Parkinson’s Society of British Columbia - New Diagnosis Day – October 3, 2009

These are things that I have learned and am still learning:

ATTITUDE – Attitude is everything. How are you doing with your attitude? – It’s a decision! Not a feeling. We didn’t choose this disease but we can choose how we are going to respond to it. It need not define us!

BRAVERY – Some days you will need it. You will feel sorry for yourself sometimes. That is okay. Just don’t stay there. Fight back.

CARING FOR OTHERS – Including your caregiver. We can be hardest on those closest to us. Focus on the world of others not self and you will be far less likely to fall into self-pity.

DEPRESSION – Watch out! It sneaks up on you. Anticipate it now. Beware if you are feeling anti-social, consistently down, apathetic, or experience change of eating habits or lack of sleep.

ENERGY – Fatigue is often an enemy. How will you combat the villain?  Naps are a great remedy.

FAITH – Faith can be very important to inform your attitude and give purpose to this chapter in your life. It gives focus to all other “letters”.

GROUPS – find others that are struggling and keep in communication. You are not alone.  Even if a group of two, it helps.

HELP – Be willing to seek and accept help. Don’t let your pride keep you from allowing others to help. Allowing someone to give to you requires humility and being vulnerable and communicates value.

INTELLECTUAL AND IMAGINATIVE STIMULATION – Beware the forms of entertainment that allow your mind and creativity to turn to mush. What stimulates your mind? How can you be creative?

JOURNAL – Keep track of what you are thinking and how you are feeling. Write, type or dictate ideas, plans and goals. Record the good, the bad and the ugly. It can then be understood by you (and others) better.

KNOWLEDGE – Keep up with what might be helpful. Be in the know. Great books and websites are available.

LAUGHTER – Look for the humorous. Spend time with people that make you laugh. Learn to laugh at yourself.

MAKE MEMORIES – Build the treasure chest of great memories and stories intentionally but be ready for the spontaneous. With whom do you want to build memories?  What kind of memories (places, faces, experiences)?  Ask why you want these memories. Need not always be laughter memories.  Remember that memories usually are shared.

NEVER GIVE UP – You are a model for those who watch how you live with your challenges. How will you “finish well”? What does that look like in your world? The disease cannot beat us if we defy it. Choose not to give in and let it get in the driver's seat.

OPTIMISM – About what? Breakthroughs are happening daily. Support the effort. Life could be worse. Life is still worth living when you have a mission. We all enjoy the infectious optimism that encourages us to keep trying, keep living, and keep hoping in anticipation of what good things will happen. Avoid wallowing in self-pity at all cost. A little is realistic, but no more.

PURPOSE – Find a purpose that transcends the disease and gives focus to the time, talents, energies and resources you have. It may be to visit and encourage others. It may be to learn a new skill or take a class.

QUALITY LIVING – What is it that impedes living a quality life? What is quality versus quantity? Define the values you ascribe to. Don’t ask what I can’t do, but rather what I can do. Make a decision to live a quality life despite or even because of the PD.

READ – So many books on dealing with disease or challenges (Tuesdays With Morrie). They are uplifting. Consider writing your story.

SOCIALIZE – Family and friends are keys to avoiding that “aloneness” feeling. The tremor and other symptoms often result in us feeling awkward and embarrassed. Combat that feeling of wanting to distance or isolate yourself.

TALK – Others often don’t know how to respond to you but you can talk to them about it. How can you do this without sounding like you want their pity, or being silent and afraid of getting a shrug?  Accept yourself as you are and others will accept you.

UNDERSTAND – The disease, the roles of the various health care professionals and the treatments available. Keep a drug diary. Record and research medication responses. Keep a binder of information on PD.  Join

VENTURE – What is an adventure? It is something a little scary, risky, out of the norm, exciting and challenging. Something we look forward to. Reach beyond the comfort zone. Every day has adventure.   Find it. Every day is a great day (sometimes we just don’t recognize it). So find and live the adventure in each day. Look forward to things (daily, weekly, monthly and yearly).  What do you want to do while you can? Every year pick something that is an adventure.  Mine is motorcycle rides.

WORK – Find something to keep you productive. If you are not able to work, make something your “work”. It will make the resting and relaxing rewarding.

XERCIZE - Get moving and keep moving. Anything – stretching, strength and cardio. Helps with fatigue, depression, plus physical symptoms. Build in accountability to someone (trainer/coach/nag).

Y ME? – This is an unanswerable question. Why not you or me? Why do you have the support to actually survive this disease? The reason does not matter, only how you respond to the card dealt to you.

ZZZZZZ – Get the sleep you need. How can you deal with insomnia? Ideas from others?

Maybe make one of these ideas a focus point for each of the next 26 days.  Let's just do it!

1 comment:

  1. I'm going to run this off for a handout for my May 1 presentation to a Parkinson's group. Great ideas. Thanks. I did put your name on it as the author. Hope that's ok with you.