Northern California SCI Community Episode 3

Nick continues this blog series with another episode in which he meets up with more organizations and individuals in the Northern California SCI Community.On Tuesday March 17th, he spent early afternoon in Vallejo with Troy Plunkett of SCI Active Network before being introduced to Gina Biter-Mundt at the Kaiser rehab center.

Nick then made the short drive over to Petaluma where he had an enjoyable afternoon with Stan Kolowski who heads up the Sonoma County SCI Support Group.

After presenting at the 2nd San Francisco Peer Support Meeting with Franklin, his partner in crime on The Patterson Network, Nick shared the same material with some of the medical staff at Palo Alto VA.

Finally just last Wednesday, Nick joined Michael Hopfe, Susan Rotchy and Ron Artale as a guest at the Contra Costa County Peer Support Group.

The plan was to meet Troy in Vallejo for a late breakfast or early lunch before taking the short drive to meet with Gina at the Kaiser Rehab center. Although I had met Troy on numerous occasions, I was looking forward to this meeting as this would be my first opportunity to tell him about my own dreams for connecting the Bay Area Spinal Cord Community as well as hearing more about Troy’s initiatives with SCI Active Network.

Troy was already waiting for me when I reached the restaurant and as we were seated I immediately ordered a coffee as it had been nearly 90 minutes since my last one. Troy listened patiently as I told him more about our initiatives on The Patterson Network and I shared with him my experience in Scotland and also what I had learnt so far about the SCI Community in the Bay Area. As it turns out, Troy has already ventured down a similar path to me and he has a wealth of knowledge about the SCI Community particularly in the North Bay. It became clear we were certainly reading from the same book, just that I was a few pages behind Troy but he was helping me to catch up. Troy explained to me that he was in the process of re launching his website with a slightly different url, you'll certainly hear about on The Patterson Network when he's ready to go. More on our dreams later but suffice to say, we really connected and I am genuinely excited in learning more from him. Troy picked up the tab and I followed him to the parking lot where I saw him impressively haul himself into his truck, a maneuver which really could only be accomplished by the trained athlete that he is.

We reached the parking lot at Kaiser after a short 10 minute drive. Troy parked in one of the many empty disabled spots close to the main entrance and although I was tempted to park in a similar spot as there were so many of them, I drove to the main parking structure and parked in a regular spot. I caught Troy up in the impressive main entrance of the rehab facility where he was enthusiastically chatting away to one of the rehab nurses he clearly had a close relationship with. It was obvious Troy had spent a lot of time in the building and was on first name terms with many of the personnel. Before we got to Gina’s office, Troy briefly showed me the large Rehab Gymnasium and what was nice about it was the amount of natural light flowing in from the high windows. Troy embraced Gina before introducing me. Gina, who’s official title is Adaptive Sports Consultant among many other things, runs the Peer Support Program in which Troy has a significant role. Gina has been in a chair now for a mind boggling 40 years and looks in great shape. Well, she is a Sports Consultant after all. In the hour I spent with them, I found out so much more on how Kaiser run their Rehab and Peer Support Programs as well as some interesting facts on some of the initiatives past and present. We took a couple of quick photos and you’ll see Troy with his now trademark thumbs up in them before he left us for a scheduled appointment.

We ran well past the time Gina had made available to us and I had to quickly go over the initiatives we were taking on The Patterson Network. After thanking Gina for her time, I made my way back to my car. To my surprise, there was not one disabled spot available in the closest parking lot which must have had over 100 disabled places, I was relieved that I had not made the bad decision to park in one of them.

Google Maps informed me that I was less than 1 hour away from Stan’s apartment in Petaluma and 5 minutes from a Starbucks where I was able to refuel with another coffee. As well as leading the Sonoma County Peer Support Organization, Stan also is the main Reeve Foundation Peer Mentor for Northern California .The journey up HW121 was surprisingly scenic. The last time I had made that journey, the dry landscape was extremely bleak with a stiff breeze driving in fog from the bay. It could not have been more different, there were an abundance of white ranch fences surrounding lush green pastures with a blue sky punctuated by puffy clouds, what a fantastic drive. I gave Stan a call when I parked my car in the apartment complex, it turns out I must’ve driven passed him as he was already at the entrance anticipating my arrival. Stan met me just outside a delightful looking clubhouse complex where he gave me the key fob to activate the electronic security switch. I held the door open for Stan as he glided in on his powerchair and we found a spot at the pool side in the warm winter sunshine. Stan is a native of Connecticut and we were both very glad of our decisions to make California our adopted home, this is still winter after all. I learnt from Stan that he was injured as a teenager and has been in a wheelchair ever since. I was already blown away by the fact that Gina had spent the last 40 years in a wheelchair and now Stan has been there for over 50 years. As we chatted it was clear that Stan had touched many lives advocating for the disabled his entire adult life, primarily in Connecticut, and despite being retired now here in California. Stan’s situation itself is unique, after spending his adult life as a very active para (he must’ve been similar to Troy in his younger years) he is now being challenged as a quad due to a cervical condition. He is to be admired as he meets his new physical challenges head on, working hard on his rehabilitation and looking for solutions to maintain his independence. On our way back to Stan’s ground floor apartment, Stan showed me the clubhouse where he runs the Sonoma Peer Support Group. Sonoma SCI Facebook Page We took a detour to the place of one of Stan’s passions, which is growing fruits and vegetables. He had been liaising with the complex managers to provide an area where he and other tenants would have access to garden allotments that were raised off the ground so that they could be accessed in a wheelchair.

There is a lesson here I learnt from Stan. In order to have succeed, you must start at the beginning and develop the seeds and nurture them patiently to achieve eventual success. Stan has a lifetime of being successful in his advocacy for the disabled. He then introduced me to his friendly wife Carol, forgive me as I can’t remember how long Carol and Stan have been married but it must be at least 40 years.

Stan and Carol’s  cat also introduced itself to me as I chatted with them, giving them more information on my experience of the Peer Support group in Scotland. After about an hour enjoying their company I said goodbye and promised to keep in touch. It was a beautiful sunny evening  as I approached the Golden Gate Bridge. I could see the City in the background being lit up by the setting sun, what a spectacular part of the world we live in.

Franklin was due to pick me up at 4pm in Los Gatos so we had plenty of time to make the 6pm start of the San Francisco Support Group meeting. As we both attended February’s inaugural meeting we knew exactly where we were going and also had a good idea where to park. Franklin has a comfortable Sienna Van which has been modified to allow him to drive his power chair up the retractable ramp right into the driving position so he pretty much can just power up to his vehicle and drive. More importantly, as Franklin was the designated driver, I would be able to have a beer (or two) at the meeting. Although we got into the city in plenty of time, it must’ve taken us 40 minutes to cover the last 3 miles so we just got there with only a few minutes to spare after having to park on the 4th floor of the closest parking structure. Tom was already there when we arrived and he helped us set up the projector for the presentation. Franklin was going to demo The Patterson Network Site and I was going to cover Peer Support in Scotland and make some comparisons between Scotland and the BayArea in terms of SCI Rehabilitation Centers. It was good to see some familiar faces and meet some new ones. We were introduced to Bonnie who runs Access Northern California, check out the website at  http://accessnca.org.

We also were able to hang out with Ralf and Pete who were there for the first time. Troy, surprise surprise, had made the effort to join the group. The meeting started to wrap up well after 8pm and I became aware that my designated driver was waiting on me when we said our good byes to the SF group. Franklin did a good job listening to me ramble on on our journey home, did I really end up having 4 beers?

Ann Perkins at SCVMC had put me in contact with Dr Tim Pence who is the Staff Physician at the Palo Alto VA Spinal Cord Rehabilitation Center. I’d organized to meet with Dr Pence so that I could find out more about the VAs approach to SCI Rehab and Peer Support and also get feedback on my impressions of the SCI Support Groups and Rehabilitation Centers in Northern California. The VA in Palo Alto is an impressive complex, not only is it new, but it also has a great location in the foothills just west of Palo Alto. I eventually made my way into Building 7 (they could do a better job with their signage) and I was given directions to the nursing station by a veteran on a powerchair where I was to meet Dr Pence. After introductions, we made our way to his office where I was introduced to Susan, the Nurse Practitioner, Dr Sasaki and the Fellowship Doctor. (who's name escapes me) These Health Care Professionals were very courteous and listened carefully to the material I shared with them before providing me with invaluable feedback. The VA set up has many similarities to the National Health Service in the UK as it offers an integrated and managed approach to Health Care. During my visits to the many support groups in Northern California, I can see a real opportunity for enhanced communication and sharing of ideas in the community. I must admit that on the clinical side where I am way out of my depth, nor am I qualified, but I couldn’t help wonder how much more powerful the overall rehabilitation service would be if there were more interaction between the different health care providers. I would like to thank the team at Palo Alto VA and in particular Dr Pence for taking time out of their busy schedules to meet with me.

I’d been communicating with Michael Hopfe for a number of months now. He runs the Contra Costa Peer Support Organization and I was looking forward to meeting him in person at The Concord Police Station and telling the group more about the Patterson Network. My friend Cephas who was one of the first SCI patients I met at SCVMC while volunteering, had recently moved to Pleasant Hill. As this was only a short drive away from the Concord Police Station, I had organized to pick him up. Cephas now lives in a ground floor apartment just on the edge of Pleasant Hill and during the drive up towards his new home, it was clear to me with all the lush vegetation why they called it Pleasant Hill. Cephas was standing up on his walker when he greeted me. This was the first time I’d seen Cephas in a standing position as he had left SCVMC more than 16 months ago in a wheelchair. It was good to see his happy face and I was reminded of his infectious laugh and the aura of optimism he carries with him. As we drove down to the Police Station, Cephas joked that this will be one of the few times he’ll be confident leaving a Police Station on the same day he arrives. After following Cephas’s directions, we arrived in the parking lot and we noticed a number of vehicles occupying the disabled spots. I got Cephas’s wheelchair out of the back of the car and Cephas maneuvered his not insubstantial frame out of the car, stood up, rotated and sat down on his chair that I had positioned close to the passenger door. I noticed Michael who was decked out in Oakland A’s colors just outside the conference room waiting on the administration to clear up a booking error. With Ron, who is a peer at the group, and Michael’s help, the error was swiftly resolved and we made our way into the Conference Room which was all kitted out with integrated presentation equipment. The staff were very accommodating helping me connect my Macbook up to the projector so I was able to easily show everyone my presentation slides. Michael got the meeting started and he was visibly excited that the 6pm new start time had increased the groups attendance as we were well into double figures. Like many of the individuals I had met on my visits, Michael displays the strength of character and willingness to make the most of his situation despite his physical challenges. He had arrived there on public transport, maneuvering his power chair with a strategically positioned control he can work with his chin. After the introductions, Michael spoke about his planned trip to McCovey Cove where he planned to go sailing with BAADS (Bay Area Association of Disabled Sailors)  http://www.baads.org

“If you can steer your power chair, then you can sail with us” he was reliably informed by the program coordinator. I did mention to Michael that if he wanted to make it ashore, he would need to wear more appropriate attire, i.e. an A’s uniform in McCovey Cove may not go down too well. After my presentation we chatted for a while and it was good to see Cephas interact with the Peer Group. He was given a lot of encouragement and advice from both Michael and Susan. Susan is a director at The Independent living Center in Concord where she works with Michael and are both ideally positioned to answer Cephas’s concerns. Cephas was impressed by Rickie as he was working as an insurance coordinator for a construction company, as Cephas himself is investigating returning to work. What was also good to see was Rickie’s family there to support him. I learnt that Rickie and his family had already been informally helping other families come to terms with having a loved one suffer a life changing SCI. Before I got my camera out to capture a few photos, Michael had to leave us early to catch his bus. Below are Susan, Ron, Rosa (Rickie's Mum), Troy, Dan, Cephas, Rickie and his sister

You’ll notice Troy in the photos as he is excited about reaching out and supporting the SCI community. Troy had not initially realized that Dan was in fact the same person he had met in Kaiser rehab back in July. At that time Dan was in a Halo and completely immobilized and Troy was punching the air with delight when he realized Dan had made such a great recovery. Before we left the room, I was able to spend a few minutes chatting to Ron. He’s been in a wheelchair now for 12 years and has been partnering with Michael in the Support Group. As I drove Cephas home, it was clear he had made some important connections with the community he is now part of and he was already excited about the avenues that could be available for him. We continued our conversation in Cephas’s apartment with his wife Lisa. It was good to hang out with Cephas again and I know that not only will he get some important support from the community but with his affable personality, he will also make a positive difference to the people he interacts with. It is genuinely refreshing to see a small group of individuals helping the community by sharing their knowledge and experiences at a local level.