Parkinson’s Postings, Feb 3, 2016
“I went out tonight. On the upper west side of Manhattan, but it is safe to me because I know it so well. I go to my local Irish pub. I know it well. Paul, the bartender, has been there for over 20 years and I know him. But it is strange, because I am different. I am slow. I am the same yet I am different. Even as I type, I am slow and I make mistakes. I am different than I once was. But to God, I will not give up. I will make a difference in this world. So help me God. Only if it is my little corner in this world. I will make a difference.” A Parkinson’s patient, Parkinson’s Online Chat Room on Facebook.
Journaling is a healthy way to get through life, I’m told. You can focus on what you are feeling, why you are feeling that, and how you can change your mood or attitude. Thinking it through and writing it down can relieve some of the tension you feel just by expressing it. No one else needs to see your notes, unless you want them to.
Caregivers are one group that probably need to journal as much as anyone does. So many things can frustrate us when we see our loved ones in decline. We want to see them do what is best for them, and they so often simply do not cooperate. Do we know why? Do they not hear us? Do they forget? Do they merely just not want to bother because it’s too much work? Maybe all of these.
Writing the issues down, or telling them to a neutral party, can help us cope. It is helpful to find someone “who gets it” to discuss Parkinson’s with. My husband’s cousin’s husband had PD. I sometimes called her in Puyallup, Washington to tell her what was going on, and knew she understood. I also found a good counselor to hash things out with. There can be so many reasons why we get frustrated and angry.
I think part of the problem is that we – patients and caregivers alike – feel out of control of our own lives. In fact, this may have been the strongest underlying dilemma for me. I started a strict diet during Burt’s last months. People said it seemed a strange time to do so. My answer? It was the one thing I could control.
What’s the point? Find something you really like to do, and do it to the best of your ability, within the limitations of your current existence. Are you a patient who can no longer write in a journal? Can you type it? If not, can you go to a private spot and speak it? Then there’s the old pillow method. Put the fluffy pillow to your face and scream into it. Then beat it to death, shouting your feelings as you do.
Can you discern that I have been in a few therapy sessions over my 39 years? All of these things can help. What do you have to lose?
Now that you are feeling better – you are, aren’t you – I have two things to report that excite me. After my last column about Rock Steady Boxing, it appears that we may have some new trainers to help us next Fall. A couple in Barstow has signed up for the Rock Steady class in Indiana in October – the first opening – and plan to bring it back to the Victory Valley and Barstow.
The other is that Total Rehab, on Industrial Blvd., is set up to help Parkinson’s patients with specific movements. I visited with Greg Cox last week to learn what they have to offer. Greg has spoken to the Parkinson’s support group, and is scheduling another date soon. His training is one-on-one.
His training for Parkinson’s and Movement Disorders includes the Certified LVST BIG Treatment. This is a research-based approach developed from treatment principles of effective Parkinson’s-specific speech therapy treatment LVST-LOUD, shown to have powerful outcomes in improving patient quality of life.
After the contact from our friends about Rock Steady Boxing, and touring the Total Rehab facility, then discussing treatments with Greg Cox, I came away wanting to shout from the rooftops. I am very excited about the ways our Parkinson’s friends can improve their lives right here at home.
Subsequent to screaming in the pillow, counseling, journaling or doing movement exercises, you can go to your journal and write about it, looking back at past dates to see the improvement – not only in your movements, but in your attitude. (Greg often sees improvement in movement on the second visit). Why not take the first step? Buy that journal notebook, find a confidant and a good pillow, and pick up the phone to call Total Rehab: 800-489-6905. Ask for Greg. Then take an aspirin and call me in the morning.
Remember: Keep moving. Keep looking up.