Connecting our Community

Community volunteers organize opportunities for people to meet others, learn, share, and have fun. These may be informal gatherings, regular support groups, annual events, national conferences, social outings, or just meeting for coffee or lunch to chat with others.

Please visit our Calendar to see what's coming up and contact us about organizing something in your area.
 

Major Events in 2006 and 2007

2007 TeamWalks

2007 National Annual Conference, April, Nashville, TN

2006 National Conference Weekend, September, New York; 2006 TeamWalk Connections - 10 locations!

Loop For Life Motorcycle Ride, August, Indiana

Autumn in Carolina, October, Rural Hall, NC

RGM for SPF Golf Classic, November, Maryland

Community Connections and other events of interest

Clearwater, FL - March 8
Contributed by Kathi Geisler

Kathi and Ed Geisler, Bruce Maser, Gail and Ernie Leisure and James Scuderi were welcomed by the Tampa Bay Ataxia Foundation Support Group at their March 8 meeting in Clearwater. Crystal, the group's Chairman, organized a picnic at a park shelter for some two dozen people concerned with Ataxia, PLS or HSP.

It was a lovely afternoon to get acquainted and share stories and concerns as well as enjoy lunch in a wonderful setting. There were also two informational programs: one by a physical therapist who spoke about everyday therapies we can do and the other by Dr. Tom Clouse, who presented his "Dancing with Ataxia" program.

Crystal and Kathi will work together to partner on some future events in Florida, as symptoms of the conditions are very similar. The Ataxia Foundation welcomes all people with ataxia so individuals with HSP or PLS are always welcome to their events. Learn more about Ataxia here: http://www.ataxia.org/ .
                    

First SPF Connection held in Seattle

The first Seattle Connection hosted by Jackie Bollinger was held on February 23. Sandy Efseaff demonstrated the WalkAide for the group. She will also make a presentation at the Seattle TeamWalk on September 6, 2008. Ron Noren is hoping that other PLSers will come to the TeamWalk, he is anxious to meet others with it. Don and Gayle Gould drove up from Oregon and Ron Noren from Tacoma joined the group. Robert Haugland loves to cook and wants to open a bistro. His pastrami recipe is to die for (his email even starts with pastrami). Karl is busy raising a family that includes two nieces that they are helping to raise. Also joining the group were Julie and Mark Boyd. Mark commented that thanks to Julie slowing down as a result of HSP, it forced him to slow down which helped him to really enjoy the beauty around him. Thanks to Jackie for putting the Connection together.

Community members invited to A&M University

Jane Anne King, HSP - Dr. Mary Pope asked to me to come to her PT class and talk about HSP. I of course told her yes. I was so honored to do this. I arrived at the A&M University. There were 10-15 students all seniors. They took my vital signs, pulse, blood pressure, respiration rate check the sensation, flexibility etc. They wrote a report on me and we talked about how  HSP started on me, how I deal with it, what type of medication I was on. I am on such a HIGH. I had one of the best times I have had in a long time. We made a video which is two hours long. They loved the SPF Foundation pages and Dr. Pope said they got lots of information off of it for their students. They also went to Dr. Fink article and was helped a lot in learning about HSP. They were so happy that we would do this for them. But I told them after all they are the first people that have asked  us to participate in anything like this.

Jerry Simmons, PLS - A day at A&M University for me and Zeke !!!It was a great experience for me! and I am sure I gave the students an earful. Having worked in the prison system 20 years of my life, I am pretty straight forward....But always try not to offend or hurt feelings....

I would like to thank Dr Peggy Pope for invitation and the students for the free physical going over ...     Jane Anne

                                              
Most Inspirational Camper Award - Contributed by George Lepper

Liz Lepper was awarded the "Most Inspirational Camper Award" at the University of California
at Santa Barbara Junior Wheelchair Camp. They did everything from scuba diving to mountain
climbing (being hauled up the wall on a rope). Liz has complex HSP. She has recently lost
hearing, speech and continues to deteriorate in her ability to stand and transfer.

Lunch at the Lake Connection, Odessa, Florida, October. Seven people gathered at the lovely lake home of Bob and Maria Manz for a delightful afternoon. Maria prepared a wonderful spread of snacks and hors d'oeuvres, the weather was superb, the view of the lake spectacular, the canoe ride a delight for Bruce and Kathi, the Manz's four 4-legged friends charming and of course the company outstanding! An added plus: Bruce and Kathi were tickled to go home with cuttings from Bob's greenhouse. The group hopes to get together again in early December.

The Manz's patio overlooking a lake was a perfect setting		Doug, Kathi and Flora, with Bob joining the table		Maria chats with Flora		Bob enjoys hosting the Connection
Bruce thinks about a canoe ride		Doug and Bob get Kathi in the canoe		Bruce led the way		Kathi took a turn paddling

Picnic Connection, Lexington, MA, July. Ten people gathered for this year's now-annual Picnic Connection. Attendees brought lawn chairs and snacks or lunch and settled in around a large picnic table under sprawling oak trees on the lawn of the Lexington Visitor's Center. A handful of the group's members were missed due to their other summer activities and obligations, but those who attended had a wonderful afternoon.

Conversation centered around everyone's latest tips, tools and techniques regarding treatment for spasticity and tools for mobility, as well as getting caught up once again on everyone's daily life. Life is good!

The Lexington Visitor's Center brings back fond memories as it was the location for the 2004 and 2005 National TeamWalks, where 150 people walked, rolled and strolled through the center of Lexington, raising funds to help bring us one step closer to the cures for HSP and PLS.

This year's regional TeamWalk Connection will be held on September 8 in Woburn. Please contact Kathi Geisler for information (Kathi is in the center of the photo, with the brown slacks).

Philadelphia, PA Spring Connection, June. The first PA Connection, organized by Liz Nusseaur (who organizes a monthly support group for people with various types of neurological conditions), featured Dr Beister from the hospital of the University of PA.

Shared by Liz:  Dr Biester is a graduate of the University of Texas and hold a clinical psychology degree from McClean Hospital/Harvard University. She is an adjunct assistant professor of physical medicine and rehabilitation and director of neuropsychology at the Hospital of the University of PA in Philadelphia.

Dr Biester has done research on HSP and shared coping skills with us to help us understand the stages of grief along with the loss of ability due to a progressive condition. She asked all in attendance what their coping skills were and her responses to us were very positive. She is keen to making everyone feel good about themselves and to offer suggestions to help in dealing with progressive conditions. One attendee commented "I could have listened to her all day".

She will be a repeat speaker for sure at our next PA Connection. After our lunch (after Sue Me finished Helen K's favorite dessert at Applebee's we discussed helping with the first PA Teamwalk that Cassandra is organizing for September 9th at Knoebel's Park in PA.

Helen, LIz and Marcia

Bob, SueMe and Murphy

Southern CA, June. Connection Expo
Shared by Malin Dollinger, M.D., SPF Board Member and organizer of the event (at right)

The Southern California Connection was held on Saturday afternoon June 16, at the Long Beach, CA Convention Center. There was a three-day Abilities Expo being held there, and we took advantage of that event to have that activity also available for participants, in addition to our Connection. The Abilities Expo had, as usual, many exhibitors of accessible vans, wheelchairs, scooters, transfer devices, special items for children, lawyers who specialize in disability law, lots of special gadgets to aid walking, sitting, bathroom needs, sleeping, etc. They were even selling one special chair to assist handicapped people in their sexual relationships.

Our meeting began at noon on Saturday, with each of us bringing lunch. Coffee, water, and snacks were provided by the convention center. We had about 25 people in attendance, including a family from Jordan with HSP. The weather was the usual dry 75 degrees. The meeting began with a description/discussion by Malin Dollinger of his own medical history, beginning with how long he has had HSP. There were three versions of the answer to "how long have you had this?" One is since age 55, when the diagnosis was made. A second is from age 4, when he remembered getting his heel cords [Achilles tendons] stretched and having ankle clonus, and a third answer is when he was one cell old, since the genetic mutation was already present.

We had an opportunity to discuss the signs of upper vs lower motor neuron disease [former; muscles are spastic, reflexes are overactive, and Babinski's sign is present] [latter: muscles flaccid, reflexes decreased, and Babinski sign absent]. We then discussed the specific symptoms, nature, and progression of HSP and PLS, and the differences, and then some general discussion of genetics. Various participants had questions as we went along, and the meeting was very informal. The questions and discussions went wherever there was a need.

Children also attended the Connection (click thumbnail)

A family from Jordan attended the Connection (click thumbnail)

One of the main events was a discussion of the Walk-Aide device, in which there is a sophisticated electrical device, about half the size of a pack of cigarettes, strapped to the leg below the knee. This "fires" the peroneal nerve/muscle, which lifts the toes every time a step is taken. It is quite sophisticated, and requires considerable time to adjust and adapt it for each person. My daughter Cynthia walked around the room, with the units turned off and the units turned on, so we could see the remarkable difference. She has already posted her own thoughts about her progress.

Then we went around the room, and each person expressed and shared thoughts about their own illness, history, problems, and achievements. One family came from Sacramento, about 500 miles away, and there was a family from Jordan. There were about 8 children there, of various ages. Other participants were from San Diego, and various areas between Los Angeles and San Diego. I had a "penny jar" out, and we in fact collected $63 in donations.

It was then time for the outside speaker, Paul Webber, a very skilled therapist, who explained the Walk-Aide device and showed a video. His
presentation lasted about an hour, including a very complete explanation of the "ins and outs" of this unit, followed by his answering specific
questions from participants.

The rest of the time was informal, with small groups of people discussing common problems and ideas, and we all agreed that we would wish to meet again, from time to time. It seemed that every three months would be useful, and I will pick a central location not too far from any of us except for Sacramento and especially Jordan. We thought a lunch meeting on a Saturday would be the simplest, non-work interfering, daylight travel-favoring time, perhaps at a restaurant close to a freeway, to cut down the travel time (and especially the "getting-lost" time).

I would like to thank all the participants, who made a great effort to be there and to share their experiences with us (as well as the donations), to  Paul Webber, who made a great contribution by educating us about the Walk-Aide device, and to the Abilities Expo, who supplied the room and the setup/ chairs/ tables/ etc without any fee.

Reno, NV, June. SPF member Geoff Kettling races in the annual Tour de Nez!

Note from Geoff:  Friday and Saturday was the Criterium (how many laps can you do in allotted time) called the Tour De Nez. We had about 8 handcyclists 6 in the para division 2 in the quad division. Friday in Truckee California I came in last in the para, and Saturday I came in 4th. Winner of both events was John Kirsch CEO of Sportif.

Tampa, FL. Lunch Connections

Several Casual Lunch Connections are held each year in the Tampa Bay area. Click the thumbnails to see the photos. Please contact Kathi Geisler for information regarding future Florida Connections.

	In June, Bruce and Kathi took a Segway tour of Sarasota. Although Bruce has PLS and Kathi has HSP, riding the Segway was not a problem. The vehicle adjusted miraculously to one's movements so balance was not an issue - in fact, says Kathi, "It's easier to stand on a Segway than the floor!". The tour meandered through the picturesque, side roads of Sarasota as the Tour Guide provided a narrative about the area and homes. The group traveled to the Sarasota bay front where drivers took a break and photos before heading back to the Segway center.
	Last April, some SPF community members joined up for a Sierra outing to the Manatee Viewing Center in Tampa that Carol (at far left) coordinated. Carol organizes a monthly Roll & Stroll Sierra outing. Kathi (center) and Bobbie and Joel joined in the fun.
		Last fall, a small but mighty group met for a Lunch Connection organized by Flora (seated in blue at far left) at a popular Italian restaurant.

Burlington, MA, December. Move Forward Lunch Connection Seminar

Twenty-eight people gathered in a function room at the Burlington Library for a Move Forward Connection focused on Tips, Tools and Techniques to enhance mobility. During an introductory Round Robin, attendees shared what helps them. Strategies centered on assistive devices and various forms of exercise programs. One attendee spoke about her Service Dog, who sat attentively at her side and another shared about her Baclofen Pump.

Lunch provided casual 1-1 sharing time to focus on individual stories and concerns. Several people were first-time attendees to a Connection event and were meeting other people affected by SPF disorders for the first time.

Kent VanHeukelom, CO from Hanger Prosthetics and Orthotics, presented a program on Ankle Foot Orthotics (AFO).  AFOs are worn on the foot to promote function in lifting the foot to walk and can be custom made or custom-fit. He brought a variety of models. Kent's also provided a fascinating program on the new WalkAide electrical stimulation device, which was approved last spring by the FDA.  WalkAide stimulates a nerve in the lower leg to then stimulate the foot to pick up and clear the floor. Most attendees had the opportunity for a trial test to see if their nerve could be stimulated successfully. WalkAide is not yet covered by insurance. For more information, visit www.walkaide.com

Boise, ID, September. Pat Bernhard organized the annual Boise Connection. She shares:

"Our Connections lunch was GREAT!! We are a small group but as I seem to say every year, there is always at least one person who receives literally life-changing information, and it is so worth it!!

The physical therapist, Jill Billing, who spoke last year, was so helpful. She has spent 17 years helping people with neurological difficulties, so she understands spasticity, reflexes, etc. Dr. Friedman was pleased last year when he saw who the P.T. was. This year, she volunteered to come every year if we want her - we do!  Between Jill and Dr. Friedman, we got some GREAT instruction in LOTS of areas!! Usually, although we have the room from 12:00 to 3:00, we are done by 1:30 or 2:0. This year, we were done at 3:15!"

Contact pbernhard@ureach.com

Denver, CO, September. Dale Rutschow once again organized a Colorado Connection. A note from Greg, one of his usual attendees:

"We held our Colorado Connections meeting this past Saturday. Dennis Morales provided our meeting location - St. James Meeting Hall. We had 9 participants, and our guest speaker was from YOUCANTOOCAN Inc. (www.youcantoocan.com). Dennis goes by their store almost daily in his work activities, and went in to check it out. Youcantoocan is a companythat provides items to assist with a more independent life dealing with aging and disability issues. They have their store, as well as a catalog and online opportunities. She brought along some of the items that are sold that might be useful in our situation. She had gone to the SPF Foundation website to first learn about PLS and HSP.

Beyond this we had our general roundtable type of discussion, how's everyone doing, what's new, have we found anything to help with life's little gifts....

Also, we shared some pizza...."

Contact Dale Rutschow

Tampa, FL, October. Kathi Geisler and her committee (Flora Brand, Doug Brand and Tawny Swain Castle) organized the first New Moves Retreat for women with HSP or PLS. A TeamWalk Connection was held at the conclusion of the event, which welcomed family members and friends of conference attendees and other SPF community members to join for a Breakfast Connection and a TeamWalk to raise funds for research.

The New Moves Retreat brought courageous women who “walk the same walk” together for an inspiring, enlightening, educational and empowering weekend. In a relaxed and supportive setting, ladies made new friends, had fun and explored concerns that matter most as women with a walking disability. The experienced helped us gain new awareness, perspectives, tools and techniques to help us thrive as the extraordinary women we are.

From Connie, an attendee:  "To all who did such wonderful work on making out Retreat a HUGE success....Bless you! To all who attended and made it wonderful and thrilling to be part of such a great group of women, THANK YOU! If I never make another Retreat....This Tampa one will be imbedded in my memory forever. Nothing could beat the
greatest weekend I've ever had! Connie."

Please see the following glorious slide shows:

Faces of New Moves:  http://photoshow.comcast.net/watch/UI4bQ2XZ

New Moves Retreat:  http://photoshow.comcast.net/watch/eR4Gu2mA

Tampa TeamWalk:  http://photoshow.comcast.net/watch/yr4Fv4SW

Tuckerman, AR, September. SPF volunteer Sue Huskey's family organized a Gospel Evening as a fundraiser for SPF Research Awards. Note from Sue:

"My uncle (a pastor) came and started it off telling the people how this disease has been in our family for a long time and how hard it is on the ones who have it. He lead us in prayer. We had a gospel group (Saved by Grace) perform for us. A group from Deanie's church did sign language with gospel music (signs of praise).  My grand daughter Abby Summers sang a gospel song and did a great job!

We had a silent auction with items that local businesses had donated. Deanie got a concession stand from the Pepsi Company and she bought the drinks from Pepsi Co.  We sold hot dogs, pickles, chips and dip, and candy bars.

We are blessed and proud to have raised around $1,700.00 for Research Award!"

Austin, TX. May and September. The Austin Windsurf Club again donated proceeds from their annual Learn To Windsurf Day in May, thanks to promotional efforts of Marlene Doolen, former SPF Board Member and windsurfer. See Marlene in the Registration photos.

The annual Austin Connection, organized by Marlene, was held September 2. Here's a note from  Marlene:

"The Austin Patient Connection Luncheon was very interesting with ten people coming together to communicate about our experiences and ask questions. This year's Connection was called Hints from the Group.  We saw hinged AFO's that were revised by putting a lock on them so the hinge could or could not move depending on what the user wanted.  There was a non-motorized scooter shown that could be used if an affected person still had balance to stand on the scooter and push it around with one foot. With the problem of using two hands to move a walker, a solution to holding an umbrella and holding on to the walker was shown.  The company REI has a rain poncho that fits into a little zipper bag; it was ordered online.  The rain poncho can be put on in the car while seated.  It slips over the head with a hood and fits freely over the shoulders with no side seams.  After the poncho is put on, the poncho can be draped over the walker or wheelchair thus keeping the person and walking aid protected. Robbie, the IBOT vacuum's adopted name from me, showed how he scoots around the room and vacuums.  He is a cute fellow in that he announces when he begins his work and when he finishes. Also, the golden retriever made an appearance.  This fellow picks up stuff from the floor, on the table, from a cabinet, etc. and does not require food or potty breaks.  The golden retriever has a relative in almost every room of my house as I am always dropping things and was purchased from Walgreen's Drug Store.

Holding a local patient connection is a great way for people to meet and to share knowledge and develop friendships.  Please consider holding a patient connection in your area of the country.  I would love to help you organize one if you have questions, and I am sure others who have held other patient connections would help also.  We're just an email away!"

Contact Marlene

Berkeley Springs, WV. April. Shared by Ronnie Grove, organizer of the annual Spring Fling weekend (in photo at right, in front, leaning over)

We had a great social meeting with lots of visiting, talking, laughing and relaxation. Nothing too serious except what can be more serious than meeting others who know where you're coming from?

The climax of the Penny campaign was the highlight of our weekend. In the beginning, there had been doubt and apprehension. There were times I questioned my logic. A few wondered if I were insane. A million pennies! Who, in their right mind, would undertake such a task? (Who says we are in our right mind?)

Steve Lockwood placed a 5 gallon water jug in the conference room on Saturday at the Spring Fling. I knew some of those coming were bringing pennies and I had asked friends, family and co-workers locally to bring their collections and dump them on Saturday. I thought the water jug would be a joke. That's a big jug and I expected maybe 2 to 3 inches of coins at the most. Well, that baby was over half full at day's end plus $50.00 of rolled coins that we didn't drop in, plus a big bag of pennies in my trunk that had gotten overlooked and a coffee can that we emptied the flower vases into! ....The jug had a total of "new" money at $188.65 plus we picked up $590.00 in checks on Saturday and a total of $95.08 in cash from other sources. Bottom line is that as of right now my records show $16,211.75 and counting. Vaughn paid a tribute to Jeannie Young from NJ who is a Penny Captain and had her diagnosis changed to ALS. She is now bedridden with only a little hand movement and speaking with the alphabet board and eye movement. Her team made their goal of $100.00 every month. Just believe in yourself and those around you. We did it! Everything from here on out is gravy. Let's hope we get lots of gravy.

Fundraising is an ongoing thing. Ideas are important. Never be afraid to mention yours. After the conventional ways are used up we start to look for more ideas. They won't all work but sometimes an idea can be the beginning of something that does work. It can be a fun thing, a silly thing, or a very serious thing. What does it matter if in the end it produces dollars for research? Keep the ideas coming and keep those penny jars out. Who knows how much we can raise by the time the jars wear out? That’s my two cents worth. And THANK YOU, THANK YOU, THANK YOU each and everyone that helped in any way. You are the BEST!!!!! Who wants to take on the next project?

The Francis Asbury United Methodist Women fixed our meal on Friday. Co-workers from the bank helped serve it and clean up and on Saturday they returned to me a check for $215.00. I was the topic of the sermon Sunday. We have a new minister and he was not aware of exactly what my group was. He said when he walked in and saw all these happy people on walkers, using canes, and wheel chairs it brought tears to his eyes. So, actually, all of us were part of that sermon.

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