Mindfulness

 Mindfulness and communication ~ I woke up this morning feeling just really good for a change and told Susan that this was a good day.  I do that every day, or at least give her an indication of how things are going for me, so she can plan her day and we can evaluate our plans efficacy.  Some days I just wake up and can't do the things that I wanted to do and make her aware of it as early as possible, so it doesn't ruin her day for her and she can make alternative plans.

We are finding that it is more important as time goes on to be communicative of our limitations.  That goes for her as well.  Somedays, when it is smokey, as it is today, Susan isn't able to be outside with her allergy to smoke.  As my Parkinson's progresses, I find it is more important every day to communicate the limitations to her, as it would be to any caregiver, to allow them to get a mindset for that day.  As we all know, every day is a brand new challenge.

The aggravation and frustration level is reduced with good communication.  To think that your plans are going forward as you had perceived them and had then in your mind and find out that it is impossible to complete them five minutes before you are ready to leave is not fair to your caregiver and does NOT improve their disposition.  It is always best to have a back up plan every day.

Thoughtfulness, mindfulness and recognizing the needs of your caregiver, as well as your own abilities, will maintain a healthy communicative relationship.  Of course, this is all my perception.

Management Issues

The Press-Enterprise today had a quote by Christopher Reeve, "Once you choose hope, anything's possible."  It made me think of a conversation my wife recently had with Derrick, an acquaintance.  In fact, he was a co-worker of hers from twenty years ago.  Out of the blue he contacted us and during the telephone discussion with him from his East Coast home, he happened to mention that he was diagnosed with Lupus more than ten years ago.  We didn't have a great deal of information on Lupus, but find that it is an auto-immune disease that can be very painful and restricts activities and energy levels, much like Parkinson's Disease, albeit a different causation.

He discussed how he has to modify his daily activities based on how he feels any given day.  Weather, he said, plays a huge part in how the illness affects him.  I thought, Boy, his Lupus is not unlike Parkinson's.  I find that colder temperatures make my tremors worse, and heat can affect the length of time my PD meds are effective.  Some days you wake up and feel much better than others.  So you modify your day's activities to the extent of your abilities.  I thought, you know, there are a lot of diseases out there like Parkinson's that have huge impacts on the lives of the individual.

Derrick also made the comment that he has to manage his life around his Lupus, a comment that we have heard and have been making to others with regard to Parkinson's.  I wake up every morning to test the new waters of the new day and work to the very extent of my abilities for that given day.  Making people aware of the daily limitations and gaining understanding and acceptance by those caregivers, family members, friend, and co-workers, goes a long way towards making your life more fulfilling.  So for me, and for Derrick, we will move forward, testing the waters, but always, every single day, moving forward and managing our separate diseases.  And like Christopher Reeve, hope is always on the horizon.