Having received so much help from my Hervey Bay support group, I looked online for one near where I lived in Oregon. The only group nearby held their meetings at a retirement village. I eventually made contact with the new facilitator, after making an overseas phone call and writing a couple of emails, then put it all out of my mind till my return.
The retirement center looked more like a ski lodge, or a hotel! The receptionist directed me to the meeting area, which was part of a larger room. I sat on a leather seat on the other side of the large coffee table and immediately regretted my choice of seat.
I had brought all the information and handouts from the Parkinson's Resources of Oregon (PRO) conference which had been held the weekend before. I offered to pass some of it around, including the Aware in Care kit from the workshop that I had attended. This was a bit overwhelming for me, and my voice just didn't carry across to the others. No one except the facilitator could hear me. Thankfully, she took charge, circulated the handouts and together we explained the contents of the Aware in Care Kit to the rest of the group.
The kit is designed to take to hospital and contains a medic alert bracelet, wallet card, forms listing medications taken, those not to be taken, reminder cards to be shown to nurses after a change of shift, a fridge magnet and instruction booklet, all contained in a convenient black canvas bag. As the kit is meant to be distributed as part of an educational workshop, we decided to organize having one at a future meeting.
We watched a DVD about dealing with tremor without medication. Tips I made a note of were to calm down and take deep breaths, and also to stabilize the body part that has the tremor (e.g. rest your elbow on something).
About six others were at the meeting, and most of them were from the retirement center. One gentleman mentioned that he had been reading the book 40,000 to One by local baseball player Ben Petrick. I had not heard of Ben nor his book, but made a note of it, and borrowed it from the library later that week.
Can you believe that I still sat across from the others in the (noisy!) leather chair?! One of the ladies moved to sit nearer to me just to hear what I was saying! Was it the room, I wondered, or just me?
We watched a DVD by an occupational therapist, showing tips on how to cope in every day life. Some tools, such as a reacher (grabbing tool with a long handle), were shown. A lot of the tips were for those who had advanced symptoms, so it was a sobering video for me!
Our facilitator, one of the nurses at the retirement center, was not able to make the next meeting as her schedule had been changed. We decided to cancel the Aware in Care workshop we had planned. I didn't want the meeting to be cancelled though, so offered to run it, with the help of another member. However, he was unable to attend.
I prepared and printed a series of six topic cards, and used the first two, dealing with diagnosis and medications. I also moved the big coffee table out of the way, arranged the chairs in a closer grouping and sat where people could hear me, with a little table handy to put the cards on. I made an effort to speak louder, and this was noticed and appreciated.
The cards were a success, as they were firm and small enough to hold, without a lot of distracting info on them. We all shared stories of our diagnosis. Most of them had not heard of Parkinson's before diagnosis. One lady was still angry about her diagnosis 30 years later! We then moved onto the subject of medication. I was surprised to hear that everyone else was put straight onto levodopa. One gentleman with Restless Legs Syndrome (RLS) explained his medication regime and what helped him. A lady with dystonia was able to tell us what didn't help her. I felt that the meeting was a success and was honored to be part of the story sharing.
Earlier in the month, I had heard of a new Young Onset support group starting up and was invited to attend, even though I was technically not Young Onset (i.e. under 50 at diagnosis). When I arrived, I was the only one there aside from the facilitator and the PRO representative. As no one else turned up, we began the meeting by talking about the aims of the group. I showed him my topic cards and we talked about symptoms. I mentioned Ben's book, and he suggested having Ben as a speaker down the track, as he knows him personally. [As it happened, I saw Ben the following evening at an author's reading, and got to speak to him afterwards while he signed the books I had bought, but that is another story.]
Hopefully this group will grow in time, and I decided that I will continue to go to both groups, at least for the time being.