Freezing Situations

By Marilyn Basham

Freezing takes on many forms. Some patients have difficulty getting movement started (start hesitation), while others freeze when going through a doorway or turning in small, cramped spaces. Freezing appears to be worse with stress, especially a "time related stress." The faster you hurry, the more faulty your walking becomes. Here are some general guidelines that my greatest teachers, you, my patients, have taught me:

Upon standing, stop and sway from side to side. This is a helpful habit to re-enforce weight shifting. This brief pause allows you time to plan, "Where am I going? Why did I get up?"

Now, focus on the task. If you try to solve too many things at one time, your attention is easily scattered.

Family can help by reserving complicated decision- making questions for times when you are seated and can give them full attention.

When approaching a doorway, target an object in the new environment and walk to that object. You must give your mind a motor plan to engage it.

When your mind wanders and you find yourself starting to stiffen and freeze, STOP there! Don't push ahead. RELAX, shift your weight more toward your heels, and soften those knees!

Breath deeply, sway and when you are ready, shift weight to one foot and step out with the other.

Marilyn Basham is a physical therapist with a specialization in neurological rehabilitation. She is a certified balance instructor, a yoga instructor, and a Tai Chi practitioner. The last four years she has concentrated on physical therapy for people with Parkinson's disease.

Thanks so much, Marilyn!

A Thank You Letter

By Robert L. Lemon, Th.D.

Upcoming Local Support Group Activities

7/2: Berryessa SG; please call Sridevi Sheshadri at 866-250-2414 for information.

7/8: YOPD SG; presented by Donna Glass. Topic: Healthy Touch and Massage.  For information please call Sridevi Sheshadri at 866-250-2414.

7/18:  Redwood City; noted Peninsula podiatrist Curtis D. Leviant, DPM, will present a program emphasizing the importance of our feet to our entire body, and outline steps to strengthen our feet and help to improve balance and agility! Call Sequoia Center at 650-367-5998.

7/22 :  Marin County;  speaker : Lynn O. Olson ( Retirement and Long-Term care Planning Specialist).  Topic:  Asset Preservation Planning. Please call

Gloria Rasti at 415-381-6680.

f you would like to receive local support group newsletters, please write to PPSG, or call 408-734-1593.

Items Available:

*Available: stepper and exercise bike. For information, call Mary at 408-267-3361.

*FREE: All items in very good condition: call Marge at 408-927-7735, after 7 PM or on weekends

Nova Traveler Walker: handbrakes, basket, bag, 3-wheeler

Nova Cruiser Deluxe: handbrakes, basket, seat, 4-wheeler

Shower/Tub wide bench with seat back

Shower/Tub chair with seat back

Oakland Support Groups

For many years, the Oakland Parkinson's Support Group has been the beneficiary of kind and generous support from the Bay Area Easter Seals organization. The group has been given meeting space and the assistance of one of the Easter Seals staff in sending out flyers for each monthly meeting. Last year the Easter Seals building was sold, and the organization moved into an attractive third floor suite at 180 Grand Avenue, Oakland.

The new meeting place is quite suitable for the Parkinson's group, except for one problem. It is difficult to find street parking spaces and the nearby parking structure is quite expensive.

Recently, I, the group leader, was surprised by a phone call and a visit from Catherine Berryessa asking if there was any way that she and her family could be helpful to the group. She explained that her mother had lived with Parkinson's for many years, and the family has established the Samaritan Fund to express their mother's concern for others who are affected by this disease and for other under-funded groups. I explained to Catherine about the difficulties that many members have in going to group meetings because of the parking problems. After considerable planning and negotiation, Ms. Berryessa and her siblings bought a large number of taxi vouchers from the Friendly Cab company and parking validation stickers for the Douglas Parking Garage nearby.

The members of the Samaritan Fund are encouraging members of the group to use these taxi vouchers not only for the monthly Support Group meetings but also for doctors' appointments and other special transportation needs. The members of the Oakland Support Group offer their many thanks for the thoughtfulness and generosity of Catherine Berryessa and her family.

New Director of Outreach Services Joins The Parkinson's Institute

By NiVonne Thompson, LCSW

Within the last two months, I have had the wonderful opportunity to meet and begin working with PPSG toward our common goals of Outreach and Support of people with PD and their families. I am honored to join such a motivated, caring, and cohesive group and am excited about the possibilities that this partnership may bring. Let me introduce myself as a way of starting off what I hope will be a long lasting union, until I have the chance to visit or speak at your group meetings in person. My name is NiVonne Thompson. 

I am a licensed psychotherapist (LCSW) with a small private practice and am an advanced Ph.D. candidate in Clinical Psychology, with an emphasis on the brain-behavior relationship through cognition, neuropsychological assessment and research. For the past 15 years, I have worked in a wide variety of both community based and more restrictive settings, ranging from treatment of children and families, child and adult inpatient psychiatry, as well as the treatment and research of criminally mandated (Not Guilty by Reason of Insanity) patients. More recently, my career interests have shifted toward an emphasis on health psychology and clinical medicine, with long-term goals in administration and program development, research, and an appointment in an academic setting.

As the Center Grant Administrator and Director of Outreach Services, I am focused on supporting the scientists at multiple sites to coordinate ongoing communication for the Collaborative Centers for Parkinson's Disease (CCPDER) project as well as writing the content for the NIEHS web-page, which will be accessible to the general population. The other part of my role at TPI as the Director of Outreach Services involves the reviving and centralization of The Institute outreach program, re-establishment of the Speaker's Bureau, and coordination of Institute and community-based resources to better serve people with PD, their families, caregivers, and community providers of health services. am looking forward to a renewed collaborative effort with PPSG as a member of their Board of Directors and as a person interested in hearing how The Institute can better work with individual support groups to further our partnership. 

Please feel free to call me with new ideas, feedback, or to just say hello.  (408) 542-5644.

My Experience With

Deep Brain Stimulation (DBS)

By Clement Butt, M.D.

It was a few years ago that I heard about DBS, and I became quite interested in it. What impressed me the most about this procedure was its reversibility and nondestructiveness. Then one member of our Sunnyvale support group had the procedure . He was one afflicted with severe dyskinesia, but became 100% better after the procedure. My neurologist recommended Dr. Philip Starr to me. Dr. He explained the procedure and asked me if I wanted to be enrolled in a study with the new device. The older model required two separate pulse generators imbedded in the chest bilaterally. The new device is not approved by the FDA yet. It consists of only one pulse generator and a handheld unit to control the generator to a certain degree and to turn it off and on. In all my twenty years of experience with Parkinson's disease, I have been involved in one study or another. So I told Dr. Starr that I would be delighted to be helpful in the study.

There are essentially two parts in the study. One is immediate surgery. The other is to treat the patient with medicine,  optimally for six months and then go ahead with surgery. When it comes to surgery, there is another choice. The electrodes are inserted in the globus pallidus (GP) or in the subthalamic nucleus (STN) at random. The location is known to the surgeon but kept  from the patient. At the same time, the company that made the device, Metronic, will be filming the entire procedure for study purposes.

Dr. Starr was gentle, caring, and patient. He explained everything to me and always asked me if I had any questions at every step. He never bragged about his success and did not hide the complications he experienced. It was at the end of the session that he found out that I was a retired physician. I believed that he did not treat me any differently from other patients, and I did not want him to. Before surgery many people asked me if I was apprehensive. I told them, not yet, because I did not know if I should be apprehensive or not. After the surgery, I could say that I was not apprehensive at all, and I gave them my reason: I had confidence in my doctor and his team.

Somehow, problems arose, and I had to wait for surgery for more than a year. Later, the schedule was made, and I   went  through with it. I checked into the hospital at UCSF, at 6 AM. The surgery did not start till 7:30 AM, and lasted for 7.5 hours. At midpoint, the doctors took a break. Dr. Starr and his research nurse, Elaine Lanier, went out to talk to my wife, Shushih, telling her what was going on. Then they went back to finish the surgery.

I don't recall if I did anything special. I was unconscious in the beginning and at the end of the operation. It seemed that Dr. Starr asked me if I saw the light when he passed a light in front of me with my eyes closed. The other thing I remember is that I seemed to try to help them pull off the tubes in my body when the surgery was over. Now they seem like illusions, or even dreams.

I spent most of the time in the hospital sleeping. Dr. Starr warned me that I would be very tired post-operation, and he was right. But the next day, I was up walking. Even my roommates were surprised. I was discharged one day later. Although my generator was not turned on yet, I felt the post-operative effect of a pallidotomy for a few days. I think that was a good indication that the operation worked for me. I also had marked edema on my face for almost two weeks. At one point, my eyelids were so swollen that I had trouble opening my eyes.

One week later, on 5/14/03, I returned to have the stitches removed and the generator turned on. Dr. Starr came to remove the sutures himself, as the clinical nurse was not available. I heard him telling Elaine Lanier, the research nurse, about the different kind of stitches he used for the scalp and the chest, how and why the stitches should be removed, and he warned me whenever there would be some discomfort. It gives me a good feeling to have a doctor like him. At the beginning, when the pulse generator was turned on, I did not feel the effect and still tumbled as I walked. The next morning when I got out of bed, I could not believe that I could lift  my leg. In the past, my legs seemed glued to the ground. It took at least an hour for me to regain my mobility. It is now  three weeks after surgery, and except for the small quick movements, which I still cannot do, I feel normal and free of all symptoms. Other factors aside, I believe that DBS  can help most patients. Of course, adetailed evaluation is necessary , and the surgery should be done by a team. In my personal opinion, and for good reasons, I recommend  the "star"  of the neurosurgeons.

On June 11, Clement shared his positive DBS experience with fellow Sunnyvale Support Group members. All were delighted to  hear and see  major improvements in his mobility.

Congratulations, Clement!

Respite:  What Caregivers Need Most

By NiVonne Thompson, LCSW

Director of Outreach, The Parkinson's Institute

Adapted in part from the Administration on Aging Fact Sheet

Family caregivers of chronically ill older persons or those with disabilities are generous, compassionate individuals.  They care for loved ones in the familiar surroundings of their home or community. These caregivers are "on-call" 24 hours a day, 7 days a week, because they want to see their loved one remain in the comfort and security of their own environment. But at some point, even the caregiver needs respite. Respite provides informal caregivers, who are usually relatives, a break from their daily responsibilities. 

Research has confirmed the benefits of respite. A paper compiled by Drs. Dale Lund and Scott Wright, experts in the field of caregiving analysis, states that respite benefits both caregivers and their loved ones. It further states that to be most effective, caregivers should consider accessing services early in their caregiving experience. Lund and Wright have found that caregivers need sufficient and regular amounts of respite, and it is important that the caregiver give sufficient thought as to how he or she wants to use that freed up time, when it becomes available.  Respite can cover a wide range of services based upon the unique needs of the caregiver. It might involve medical or social adult day care and/or a short-term stay in a nursing home or an assisted living facility for the loved one; a home health aide or home health companion; a private duty nurse or adult foster care. 

For the caregiver, personal respite varies as much as the individual, and could mean, for example, giving the caregiver a short break to attend a doctor's appointment or to go shopping; allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate him or herself; attending a church service or seeing a movie; taking a much-needed vacation; pampering oneself with a hair appointment or manicure; or simply visiting friends or relatives. 

Many caregivers experience immense feelings of burden, high rates of depression, and feelings of anger and anxiety.  Caregiving can also adversely affect one's physical health and ability to continue providing care, leaving two impaired persons rather than one. The emotional and physical strain of caring for a frail, older relative is often exacerbated by worries over paying for care, particularly for nursing home or respite. When caregivers and their families do not have the time or resources to meet their own needs during the process of caring for another person, all of these adverse effects can be compounded and render the person providing the care severely compromised. 

Despite all of the potential risks for burn out, there is help available for caregivers and their families. Depending on the insurance and county of residence for the person who is need of caregiving, certain free or very low cost respite is available for caregivers to allow them time away to take care of themselves. Referrals can be given by your county Council on Aging to the appropriate agency. For Santa Clara/Silicon Valley the phone number is (408) 296-8290. The local government section in your yellow pages will have the number if you do not live in Santa Clara County.  You can also call the California Department on Aging at (916) 322-5290 or me at the Department of Outreach Services at The Parkinson's Institute (408) 532-5644, if you have difficulty finding the appropriate agency to help with your situation.  Remember, that in order for caregivers to be effective, they also need to take care of themselves in the process of providing for others.