Another year is quickly coming to a close a year I have to say I never imagined would have happened. If your new to my readership I suggest you find my journals and do some reading if your not then you understand how desperate I am to leave this year behind. It’s funny how Parkinson’s has changed my perception. Be it the chemical changes that happen because of Parkinson’s or because of the medications used to manage the symptoms. What ever the case be it’s a very real and interesting transition. I was discussing with an old friend the other night, he, a far more learned man than I. Discussing the personal journey of being present a ones mind and body become ravaged with time and disease ( disorder ) in my case. It is truly a terrifying and amazing process to watch, feel and be engulfed in. As I watch my hands forget how to loosen their grip once clenched or to watch my leg simply decided not to join me on my morning walk.
Though Parkinson’s has it’s perks. I have a nifty parking pass and I get to color coordinate my canes. If I’m lucky I’ll get to spend the rest of my days painting and writing. Though next year I think I’ll not do as much traveling. I’ve one trip already booked to TX next year and plans to go back to England and see my beloved friends in Derbyshire for what will be my third year in a row. I plan to simply focus on doing 3 shows. NY, LA and Seattle. I have a large body of work just begging me for the time and attention to escape from my mind and find it’s place amongst the living. There are just a few things left to do this year. “Something Red” the event I took first place in my category last year will be happening again here shortly so the pressure to produce another award winning piece is great.
Though I’ve a few ideas on some work to submit.
Remember “Something Red” isn’t just about being only red it’s also about the use of red. In Heart Broken I find that using red to create depth not only achieved the desired look but gives this piece a unique take on the use of red. So Art and 2014 a huge year for me. Nearly every piece created in 2014 is out in the world. I traveled around the world, loved, lost, found and finally have landed at home. It took me 9 months of running from my life to find the five minutes it took me to find my future. Now that I’ve found my heart again I do not intend to let it slip away as I’ve done in the past. Now for some science:
Mid-Stage Caregiving: What Can I Expect in Three to Five Years?
Parkinson’s disease is a progressive disorder, and while medications may significantly decrease symptoms in the first few years of the illness, physical abilities will decrease and PD symptoms will increase as the years go by. The rate of progression varies tremendously from one patient to another. Caregivers are urged not to predict problems, but to be prepared for changes that are likely to occur over time.
Parkinson caregivers with a loved one in the middle stage of the disease may notice the following symptoms:
Less than optimal response to medications. Appearance of “on/off” fluctuations in response to levodopa, sometimes predictable, sometimes not, is common. This makes it hard to plan activities or predict physical capabilities, since Tuesday may be different than Wednesday. Caregiver flexibility becomes a primary virtue!
Mood and cognition (how the person feels, thinks and reasons) may become more problematic than the motor (how the person moves) symptoms. Do you need to negotiate with your PWP a change in patterns and preferences (i.e. should you pay the bills instead of him? Is it time to hire someone to do the yard work?)
Driving an automobile may become too risky, for your own family’s safety or that of others on the road). Giving up driving is an enormous loss of independence to many patients, and can signal a whole new level of burden for the caregiver.
Physical symptoms that are better relieved with non-medication therapies: exercise groups, physical or occupational therapy, specialized speech therapy to overcome the common problem of soft, hard-to-understand communication.
Role conflicts often emerge at this stage of the illness: Patients and primary caregivers rarely adjust to living with PD at the same rate! Renegotiate who can/will do what tasks? Does the very person you’re trying to help resent needing your help? Early signs of caregiver fatigue: the feeling that after several years of more-and-more “taking the lead” in your relationship (with no end in sight), that life is not turning out the way you’d expected or hoped for.
Mid-stage Parkinson’s disease is the ideal time to share more of the details of your caregiving responsibilities with key friends and family members. If you haven’t done so already, make sure crucial planning documents such as a will, durable power of attorney, and advanced directives are in place. Start building your Caregiving B Team, who can help you out in small ways now and establish a relationship with your loved one to fill in for you in the future, as the need becomes greater.
Last, but not least, enlist your care recipients’ help to take care of you as well. It takes a lot of Parkinson’s symptoms to render a patient unable to do a loving foot rub or neck massage!
So…… Yeah Parkinson’s seems to have lots in store for me how very very exciting ( sarcasm ) my goal for the coming years. Love my friends, live my family. Strengthen the relationships I plan to keep and forget the ones I don’t. It sounds callus I know but when one can literally watch the progression of a disorder like Parkinson’s steal the life from the human body the become a huge factor in life, my life and what’s left if it. I don’t fear death because in the in end I’m gone and not here to deal with pain am loss of my passing. What I fear is the stillness and loss of self as Parkinson’s steals my mind and stiffness my body the full weight I the universe behind it. I’m not hopeful for a cure not a magic bullet to appear. To many people have passed before wishing for the same thing and I’ll not be that guy.
Right then as to not end on a negative note, this life is temporary. Fill it each day with the things that make your heart sing. Take small moments from time and make them your own. A sunset, a smile. A warm embrace and a gentle breeze. These are the things that will matter when you close your eyes. Money, homes, cars and things come and go, but the memories we have and the love we feel is ours ( yours ) alone and that my dear friends you can take to the end of the road. So as always.
Be Brave, Be Bold and Thrive in the life you have. For someday it will change.
“A life in progress”