In my most recent “Book Talks” and blogs I have addressed more psychological or emotional issues. While I might call these non-motor symptoms the “soft Parkinson’s symptoms, they are not “soft” at all. The non-motor symptoms provide some of the hardest challenges a person with Parkinson’s faces. These symptoms include depression, anxiety, delusions, hallucinations, constipation, urinary urgency, sexual dysfunction, sleep issues, loss of smell and taste, fatigue, swallowing difficulties, speech issues, cognitive disorders, obsessive-compulsive behaviors…the list goes on.
Because Parkinson’s is so complex and misunderstood by the general public may people with the disease experience embarrassment or shame and withdraw from social interactions. This was a recent occurrence with me, so I decided that if I have these problems, others do too. In my recent talk with the Wenatchee, WA Parkinson’s support group, I mentioned what each of us could do to engage another whose situation may be worse than ours. What I didn’t talk about was what our friends and family without Parkinson’s could do to make a social outing less “scary” or “embarrassing”. Two events in the last two days have been great examples of “perfect friends” reaching out to me. I would like to share these with you.
My friend Jill called to see if I wanted to go kayaking. Jill and I used to kayak at least once a week but have not been out together in two years! This is primarily because I was embarrassed that I could not get into and out of my kayak, and my once decent paddling had diminished and so that I lagged behind the group. Jill had arranged for me to use our friend Anne husband’s ride-on-top kayak which had a seat and back. We met up with Anne at her house and with every step of loading up and traveling they assured me there were no time restraints and I could move along at my own rate. I was a bit anxious about getting in the kayak, but they had already brainstormed a strategy for this, and it was a breeze! When they noticed me getting behind, they hooked a short rope from the back of one kayak to the front of mine. I could still paddle but I was not getting exhausted AND I was close enough to be included in the conversation. Stopping paddling to drink water was emphasized. They had planned a beach stop so we could “defuel” some of that water we drank. At the beach, I easily got out of the kayak and both friends helped me up to even ground. Jill stood by me chatting (like I didn’t know that she was there ready to catch me) until I got my land legs on and my trekking poles out. The water was like glass as we paddled back. Getting out of the boat was so much easier because they had made it safe and my confidence was boosted. When we arrived back at Anne’s house, we got to play with her fluffy 4-week-old puppies. I was filled to the brim with joy! #1 My friends never once spoke of my weaknesses, only commenting on how they were glad I could come along, and when were we going to go again. #2 They had preplanned solutions to the challenges I might have. #3 Being vigilant, but not overbearing, #4 not being hurried to do anything #5 and laughing through things that generally make me want to cry (like not being able to get my shoes on) helped make this outing a big “WIN” for me.
Today I saw Nancy’s name as I was cleaning up messages on my phone. I checked the last message and it was from 2 months ago when we were looking for times to go for coffee, and we didn’t connect. I texted her to see if she was free, and she was. #1 Nancy said, “I’ll pick you up.” #2 When she arrived, like Jill and Anne she was not in any hurry. We sat in the new camper van and chatted. She asked me if I had any other errands to do today, and “yes” I had three things. #3 She said, “I love to run errands, let’s go”. #4 At the coffee shop, she saw I needed a straw and grabbed one before I could get up. #5 When she saw I was getting tired she said, “I have somethings to do at home, so unless you have anything else you need, I will drop you off.” I had a wonderful morning, without stress, without shame or embarrassment and got somethings done.
Both positive social situations were made possible by thoughtful friends. A little planning, a little consideration on their parts and my cup is filled to the brim and ready to pour out to others who need it from me.
If you have friends who you sense want to help don’t be afraid to communicate your needs. Not everyone is a ”natural” problems solver. Nor is everyone as intuitive as my friends. Your friends do want your company and they do want to do things that you enjoy. They just don’t know-how. It’s your opportunity to teach them. Reach out to them. You’ll be glad you did.
Reference: Davis Phinney Foundation Website article “What are the Non-Motor Symptoms of Parkinson’s, Parkinson’s 101, January 2017