Sandy Grant, Kathy Osbun, Gloria Stubbs, Arlene Irizary, George Irizary, Art Rosenblum, David Getzoff, Suzanne deKozan, Dana May Casperson, Marc Alexander and
Davis Brown and Ann Walker
Call to Order:
The regular meeting of the Board of Directors of the Parkinson’s Support Group of
Sonoma County (PSGSC) was called to order by Chair, Kathy Osbun at 10:00 a.m.
Approval of Minutes:
The minutes of the May 21, 2014, Board meeting were approved with the following correction:
The second sentence of the Treasurer’s report should read: Art has reviewed and veriﬁed that the three cash account statements match the ﬁnancial statements.
Sandy reviewed the balance sheet and proﬁt and loss statement. The net income for May 2014 is $484.40 and for the year 2014 thus far it is $735.65. Additionally we have received in the month of June income of $350 in memorial to Kathryn O’Brien Lawrence, $484 from the Johnny Garlic’s fundraiser, $225.60 from the Round Table Pizza fundraiser, $335 donation jar collection at the June meeting and proceeds from 15 tulip pins.
Art has reviewed and veriﬁed that the three cash accounts match the presented ﬁnancial statements.
Kathy said that there is a new rental contract with the Methodist Church for our meeting space. The rent will increase from $100 per month to $125. Arlene moved that we accept the new contract which reﬂects the increased rental fee. Sandy seconded the motion which was passed on a voice vote.
Marie Kay Hansen and her husband John Hamilton are now in charge of videoing the speakers at our meetings. Marie Kay has the old camera and has offered to sell it on eBay for the group. She thinks that it would fetch around $50. Dana May made the motion that we give Marie Kay authorization to sell the old camera on eBay, Sandy seconded the motion which was passed on a voice vote.
We have 104 tulips pins remaining of the original 300.
Kathy had spoken previously to Kathryn O’Brien Lawrence’s daughter about how the family wished the memorial gifts to be handled. The daughter had said that they family would like the money to be used locally but she would check with other family members to determine if they wanted some portion of it to go to educational and/or research organizations. Kathy has not heard back from the daughter so we will hold the money in our group and if at some point she hears that the family want some portion to go elsewhere we will make the donation in Kathryn’s name.
Speakers and Christmas Party: Gloria reported that Cheryl Lambert who is working with Kathy to organize a choral group of Parkinson’s patients has said that she could put together a quartet who would provide traditional Christmas entertainment that would include audience participation. Gloria has not heard back from the Paciﬁc Empire Chorus. Gloria and Bill went to listen to Marie Kay and husband’s group preform at Gaia but they do a primarily Hawaiian program. Most board members felt that Cheryl’s group might ﬁt the need best. Gloria will have further reports.
Kathy is working with Cheryl Lambert to organize the chorus for our Parkinson’s Patient members. Cheryl thinks that the fee might be $3.00 per member and they are looking for a place to practice. Kathy has found that the Church has Room 8 available for rent on days and hours that might be workable for the group. Cheryl is also looking into a possible grant from Santa Rosa Jr. College that would then eliminated the fee per member.
Kathy said that she felt this would be a worthwhile project for PSGSC because singing is very beneﬁcial for Parkinson’s patients and Cheryl will help with proper breathing and voice ampliﬁcation. The board agreed and Kathy will continue to work with Cheryl on this project.
TEVA dinner: Both Marc and Dana May attended this dinner. Marc took PSGSC brochures and spoke brieﬂy about our group before Dr. Arnold, a movements disorder specialist, spoke. Afterwards, both Dana May and Marc talked to Dr. Arnold. He has spoken to PSGSC in the past and was well received. He said that he was unaware of the Sutter expansion here in Santa Rosa and he would be interested in doing a clinic here. The protocol is that he be invited by the group here. He works at Alta Bates in Berkley and his practice is open to new patients.
Speaker survey: Of the 96 people in attendance at the June meeting Marc received 65 returned survey forms. The information gathered indicated a very broad spectrum of interest. The subject chosen most often was cognitive issues, followed by motor symptoms and speech. Swallowing, research, exercise and DBS also received broad support. Genetics and home health care were write-in choices.
The take away message is that people are interested in all aspects of the disease. Marc will offer the survey again at the August meeting.
Facilitator Workshop: Five people attended the workshop: Kathy, Sandy, George, Arlene and Richard Duncan from the Oakmont Support Group. The starting point of discussion was our existing facilitator guidelines. Alexis Glidewell of Redwood Care Givers thought the existing guidelines were quite good but she made some suggestions for reﬁnements and additions. Kathy incorporated these suggestions into a new Facilitator Guideline and presented them for discussion. It is important to remember that facilitators are volunteers, they are not therapists, nor physicians. It is always necessary to point out that different drugs work differently for each patient and a Pharmacist or Physician should always be consulted before doing anything not previously prescribed. Referral to Redwood Care Givers is a good referral for people who need to ﬁnd help for handling the difﬁculties of living with the disease.
After discussion the board felt the Guidelines as presented by Kathy were appropriate and useful. Suzanne made a motion to accept the Guidelines as presented, Sandy seconded the motion which was passed on a voice vote.
Arlene felt that we should be aware that if, as facilitators, we become aware of someone at risk we have a duty to report any suspected elder abuse. These are difﬁcult situations but to know or suspect something of this nature requires some action. This can be done anonymously to Adult Protective Services. Arlene handed out an Adult Protective Services brochure.
Alexis is willing to do another workshop for those who had hoped to attend but were unable to do so. Kathy said that those who wish to do this could get their group together to make arrangements with Alexis.
Mary’s Pizza has contacted Kathy to see if we want to continue with our fall date for a fundraiser. The consensus was that it has been a very nice occasion for members and that we should continue. Sandy made the motion that we would hold a fundraiser on October 8, at Mary’s Pizza. Dana May seconded the motion which was passed on a voice vote.
The Johnny Garlic’s fundraiser produced $480 and the intention was to give 20% each to the Michael J. Fox Foundation and National Parkinson’s Foundation. Kathy suggested that we round the amounts up so that we give $100 to each of the recipients. Dana May made the motion that we give $100 to the Michael J. Fox Foundation and $100 to the National Parkinson’s Foundation. Gloria seconded the motion which was passed on a voice vote.
Marc reported that he had received and watched the DVD, “Ride with Larry.” He said that it was a very inspirational documentary and he felt it would be suitable to show as part of a fundraiser. He has obtained permission to pass the DVD around to board members so that we could make a decision as a group.
Marc reported that Dr. Robert White who spoke at the last meeting has a trial ongoing at UC Berkley which is studying conceptual changes with Parkinson’s. He has enough participants who have Parkinson’s but he needs clinical trial members who do not have PD. The trial would pay $20/hour and take place in Berkley. Marc has further information for interested members.
Marc also told about PHD researchers at Stanford and USF who are trying to make a device that will decrease tremors externally. The device will send out electronic impulses. Work is at an early stage, not yet in clinical trials.
Marc had contacted the co-ordinator of telemedicine clinical trials at the University of Rochester about whether they would see people who are not part of their trials. The answer is no because each state has its own requirements and insurance won’t cover it.
Marc will have clinical trial information available for members at the August meeting.
Long Range Planning:
Kathy went over our strategic planning discussion from the last meeting. She reiterated that we should take brochures to Dr. appointments and to other places where they might reach new members. She also said that we had agreed that we would need to start looking for a new venue when we had three consecutive months of attendance of over one hundred.
Gloria said that there ninety six people at the June meeting. She reported that Edwin and Davida Brautman are interested in coming to a Board meeting. Dana May said that Jim Benoit was also interested in coming to a future board meeting.
Suzanne said that she had talked to people who have PD but do not want to come to meetings because they don’t want to see where the disease might lead. It was agreed that all had met people who felt that way and it was a very personal decision about when to start going to support groups and learn more about the disease. We can offer support when we feel it is appropriate and when we can, help these people see that every patient is different and each path is different.
Transportation is a big issue for people who have given up driving and do not have someone to give them rides. We should include ideas about how we could help in our next strategic planning discussion.
The meeting was adjourned at 12:00 p.m. by Chair, Kathy Osbun. The next meeting will be Wednesday July 16, 2014, at Brush Creek Senior Living.
Barbara France, Recording Secretary.