CP Conference 2004

Introduction - The Conference opened on Wednesday, June 2nd at 3:10 PM by Robert with welcome and housekeeping details. He then reviewed the agenda and introduced the concept of THECPGROUP.org.

Each person in the room then introduced herself or himself giving name, place of residence, reason for coming to the conference and often how they heard about the conference. Participants also gave information on their current activities.

Attendees included participants from Massachusetts, Wisconsin, California, Michigan, Oklahoma, Pennsylvania, Maryland, Virginia, and the District of Columbia. There were also participants living temporarily in this area but with close ties to Texas, California and West Virginia.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION I Improving Access to Health Services: Dr. Marjorie Garvey

Dr. Garvey, a neurologist, described her professional background and her interest in movement disorders. Her career has moved toward research and she is now setting up the Center for Cerebral Palsy and Related Disorders, which will be located at National Rehabilitation Hospital in Washington, DC. The facility, which will be multidisciplinary and offer services to adults as well as to children, is scheduled to open January 2005. The center will be divided into three tiers based on age. There will be diagnostic services and for each client a plan for services. Specialists in PT and OT have been contracted and a broad spectrum of physicians has indicated interest in participating.

Dr. Garvey noted that her reason for attending the conference was to open the lines of communication so that while the clinic is being established, she can benefit from the experiences and insights of the participants. She noted that published research has shown that health care services for adults with CP are poor. Reasons postulated were the difficulty in getting referrals (somewhat easier in fee-for-service situations), doctors who don’t know about needs of people with CP or are not interested in understanding that individuals need a full range of services.

Comments were made about the fact that people with CP are living longer, that research on adults with CP has only come into its own over the last ten years, that in fact most research is on conditions like Parkinson’s which researchers use as a proxy for other conditions, that medical training is for childhood orthopedics rather than adult care,

Participants offered comments about specifics that clinic planners should take into consideration:

Clinic personnel may encounter skepticism due to bad experiences people have had with being studied or insensitive practitioners
There needs to be an understanding of the fact that having CP has an effect on other medical conditions
There is a need for adjustable examination tables with padding for comfort
Sensitive gynecological care needs to be offered
People just get worn out from doing too much; need advise on what to do and for how long
Participants would like to see practitioners with expertise in adult care—OT, PT, endocrinologists, eye care,, urologists, gastro-enterologists
There are problems getting insurers to cover durable medical equipment. More visits for therapy

Dr. Garvey thanked the group for its frankness and noted that there were ideas mentioned that she had not thought of. To further the dialog, she said that she would like to work with a small group mainly through conference call and encouraged people to be in touch through e-mail to share not just the horror stories but also considered reflections on what it will take to build a medical center that will serve the needs of adults with Cerebral Palsy.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION II Portrayal of People with CP in Movies, David Bauer

The session began late (8:30 rather than 7:30) due to the slowness of restaurant service. The session was held in the Executive Boardroom rather than in the Regency as planned

David talked about how in American-made movies such as “The Usual Suspects” and “The Big Score”, individuals with CP are portrayed as stupid, or as innocents unable to commit crimes or as simply not aggressive. On the other hand European movies such as “My Left Foot” and “Gaby” show individuals who are bright but show normal flaws. Gaby, for example, has a problem with alcohol. In a book called “The Stigma of Isolation” the author points out the damage that is caused by stereotypical images of persons with CP.

David then opened the discussion asking what participants have done or can do to dispel negative images. Suggestions included:

Don’t let people say “despite your disability”
Use every opportunity to be out in the community to show what you can do.
Share stories about the way we do things. That doesn’t mean it’s the only way or even the best way. But we have to choose what is best for us.
Use the media to get information out. CNN carried a story about a child with CP who was harassed in school. She was sent home for a year while the culprit who set her hair on fire remained in school and was not prosecuted.
Older people with CP for whom there was not a lot of peer support should share their stories with the younger generation.

The meeting adjourned but discussion continued as other attendees joined the group.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION III Aging and CP, Phyllis Madachy, Bonnie Moulton

(David announced that a session on Pain Management to be facilitated by Dr. Laura Vogtle had been added to the agenda and would begin at 1 pm)

The discussion was framed around the purpose of the conference: to share not only our stories but also strategies for dealing with our issues.

Concerns were expressed about the lack of information, the amount of energy used in trying to get what you need, and the physical and emotional trauma caused by premature aging. It was noted that 15 years ago professionals serving people with CP would not even discuss premature aging. Although people in their early forties were experiencing symptoms, doctors continued to say that CP is a neurological condition without allowing for the fact that joints, bowels, lungs, muscles and other body functions are affected by CP. It was noted that research does not support the theory that over-use of muscles causes them to deteriorate.

The discussion shifted to what options individuals with CP have that would allow them to control the pace of aging while living within the community. The point was made that everyone has to develop new strategies to deal with the effects of the aging process. Some suggestions were:

Arrange living accommodations to provide the additional physical support we will need, e.g., cushioned versus hard surfaces, places to hold on to for balance as we move, possible space for PCA, adjustable chairs. But note was made of the difficulty of getting affordable, suitable housing, especially space large enough for PCA.
Find an appropriate doctor. While people had various opinions on what speciality would be most appropriate, all agreed that Medical Schools need to change their curriculum to train doctors to provide care for adults with CP. At Temple University they are working to change the Family Practice curriculum to educate future medical personnel in this area.
Adjust exercise routines to avoid damage to unaffected limbs. Note was made that insurance may pay for some health club claims from non disabled but refuses to pay for home equipment for people with disabilities. Swimming is good but there may be difficulties in dressing/undressing. In addition, many gyms discourage persons with disabilities because of liability issues.
Be conscious of nutrition since less activity or moving to a chair or scooter may mean an increase in weight and resultant problems.
Be willing to admit it if you need more help. Accept that parents and friends may not understand this problem.
Try to learn from people who are older than you are how they cope
Prepare to use more or change the kind of equipment or assistive devices you use. One participant found it hard to exchange her car for a van; some mentioned moving to scooters or temporarily to hybrid chairs, using translation devices and speech assistive devices.
Accept that problems that are incidental for most people can be a crisis for people with CP; injury to a thumb may make using a manual chair impossible, recovery from a relatively uncomplicated surgical procedure may take twice as long.
Be politically active. Do not accept “no” for an answer form your legislators.
Get UCP to “step up to the plate”. Currently, 64% of people receiving services from UCP do not have a cerebral palsy diagnosis. The organization needs to refocus to train the trainers who work in gyms to understand the exercise need of persons with CP, develop a roster of doctors who can work with adults with CP
Some programs and projects exist that adults with CP can access or use as models for new programs:
In response to the concerns over difficulty in getting information and the need for social support, participants from Temple University described their Center that seeks to collect and disseminate information and invited attendees to become participants in their work.
One conference participant described a model ten story totally accessible building with space for PCAs. Students from the neighboring college can get free rent in exchange for providing services.
Become aware of community-based services. The facilitator described the pilot projects on Aging and Disability in 12 states funded by Federal dollars. While she is most familiar with the Maryland project and invited residents of that state to contact her, she will also provide information on other state programs.
Austin, Texas has a model exercise program for individuals with CP that is funded by a grant. The participant who brought this information said she would like to have a group that would go to a pool together, to find people to help with range of motion exercises, and wheelchair free zones.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION IV Pain Discussion

The topic of pain management was discussed in an hour and a half-long forum. Four questions were incorporated into the discussion and are listed as follows: What are your sources of pain? How have you managed your pain? What have you used that has been effective? Has your pain increased with age?

Of the 24 adults present for this discussion, only 2 did not have some source of chronic pain. It was clear that pain increased with age in all those participating in the discussion. Neck, back, hip and knee pain were primary areas of complaint, with some hand and foot pain mentioned as well. The pain in these areas appeared to be musculoskeletal. Several women complained of significant menstrual pain as well as pain from fibroid tumors. A number of participants voiced pain with headaches of unknown origin. Those persons with neck pain and one or two with low back pain mentioned numbness and tingling in their extremities. Those with neck pain had tingling and numbness in their arms, and those with low back pain who had numbness complained of it in their lower limbs. Several reports clearly related numbness and tingling to overuse in the hand and one participant reported having had carpal tunnel surgery. Problems with infrequent position change were reported to cause pain as well. Pain with function was noted. Some persons who crawled to get around in their homes noted knee pain with crawling and others mentioned hardwood floors and rugs both as aggravating pain to hands and knees when crawling. One participant mentioned temporal-mandibular pain.

Successful solutions for pain management included hot baths, hot tubs, heating pads, microwavable hot packs, and commercially available heating wraps. Moist heat was preferred but dry heat was used when moist heat was not available. Heat clearly was successful in temporary alleviation of pain. Other common solutions were use of chiropractors and massage therapists, exercise, non steroidal anti-inflammatory drugs, librium, antispasticity drugs and a few other medications. Limitations in activity increased pain, while exercise such as walking and dancing were noted to decrease pain. While swimming was seen as helpful, there were special challenges with the activity – difficulty getting dressed afterwards, transportation and difficulty finding pools that were warm enough. Biofeedback had been used with success by several participants and one participant mentioned BOTOX as a successful treatment for neck pain. The cost of chiropractors, drugs and biofeedback was seen as a deterrent to these aids. There was discussion of the potential effect of medications on pregnancy by some of the women and of concerns regarding complications from intrathecal baclofen pumps. Secondary pain from ancillary muscles overworking after BOTOX injections was discussed as well.

Most participants talked about how they had learned to ignore pain and believed that this practice made them less appreciative of the significant levels of pain they were experiencing. Concerns with musculoskeletal changes with aging that could increase pain were mentioned particularly around the spine.

The University of Washington has a website where data on pain is being collected. http://depts.washington.edu/rehab/research/chronic.html

The moderator of this session was Laura Vogtle, PhD who also wrote this summary.

Laura K. Vogtle, PhD, OTR, ATP
Interim Chair and Associate Professor
Department of Occupational Therapy
University of Alabama at Birmingham
1705 University Boulevard
Birmingham, AL 35294-1212
Phone: (205) 934-7326
Fax: (205) 975-7787
Email: lvogtle@uab.edu

NOTE- SEVERAL OF THE ROUNDTABLE DISCUSSIONS WERE UNSTRUCTED. QUESTIONS FROM PARTICIPANTS AND ANSWERS FROM THE ROUNDTABLE MODERATOR AND OTHER PARTICIPANTS. THESE DISCUSSIONS ARE NOT EASILY SUMMERIZED, AND THE MATERIAL BELOW HIGHLIGHTS SOME OF THE TOPICS DISCUSSED.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION V Surgery, Dr. Laura Tosi, accompanied by Nancy Henry, Ginny Paleg, PT, Jidy Woodruff and her son Jeffery Hunt, and Joe Barrick

Muscles don't keep up with bone growth and problems arise.
Tight muscles wrap around joints, causing pain.
Protection against hip displacement becomes important
- hips should be looked at every couple of year
- there are strategies to keep hip in the socket
- alcohol injection every year eases tightness
  - Q. What are symptoms of hip displacement?
    - A. knee, thigh, or groin pain
  - Q. How can hip displacement be prevented?
    - A. stretching every day

Q. Who should we see for hip problems?
- A. Dr. Mary Ann Keenan at the University of Pennsylvania

Potential advocates for the thecpgroup.org are people with strokes. many of whom have the same needs (home modification, in home care, medical expenses) as people with cp.
Develop “centers of excellence” to address the health issues of people with cp.
spine surgery – avoid it if you can
Osteopeorsis -- vitamin D is helpful; it opens cells in the gut so body can absorb calcium. Take about 800 units a day which is the equivalent of 3-4 glasses of milk/day. 1200 mg daily. powdered milk; laetnio
- Glocosaive (sp) is recommended for people with cp
- Studies are needed re: bone protection for people/cp who use chairs.
  - bone density may be low
  - seizures can interfere with calcium absorption
  - calcium may be needed daily
Q. Does it take longer for a person with cp to recover from an injury?
- A. Yes
Q. What strategies are available to speed recovery?
- A. Exercise --before surgery, make sure that there is a rehab plan to be followed after surgery. in many cases, a rehab plan before surgery to prepare the body for the operation is a good idea.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION VI Sexuality, Mary Ann Carmody

Ms. Carmody is a registered nurse and an AASECT-Certified Sex Educator.

Ms. Carmody opened her remarks by saying that the conversation would focus on sexuality rather than sex, and the emphasis would be on healthy and safe sex. She used the acronym PLISSIT to indicate some of her main points.

“P” – Permission to be sexual human beings.

“LI” – Limited information which is needed for a healthy and safe sex life.

“SS” – Social Skills

“IT” – Intensive therapy

Definition of Sexuality – sense of desirability, but people with disabilities are often over protected and have difficulty developing this sense. Some participants said they sometimes act like a teenager because they lack dating experience.

A participant noted that sex is often less important than other ways of showing affection for another person. Another mentioned the sex becomes more enjoyable after intimacy has been established. The book “Sex Starts in the Kitchen” was mentioned.

Differences in gender attitude were discussed. One participant said that men often don’t express themselves in the way that women need and want them to. Another said that people with disabilities may find a sexual identity. Issues of trust- once we’re hurt, it’s hard to try another relationship. We become vulnerable in ways that people without disabilities do not.

People with disabilities in social settings such as bars and parties sometimes attract drunks and/or people with emotional problems. Other nondisabled people sometimes think- “I’ll sleep with her because there is no one else that will and she will be grateful. A “pity fuck.”

People with disabilities are sometimes viewed as “asexual.”, and treated as a “kid sister”. When one woman who uses a wheelchair was interested in nondisabled man, she invited him to lunch, he replied “How would this work?” But it wasn’t clear if the guy meant “This situation is too complicated for me too handle”, or “I would like to do this, is there anything I should know to make the occasion enjoyable.”

One woman dated a man with CP but he wanted sex and she was a practicing Catholic. She has been told that if she dated nondisabled men, he wouldn’t marry her.

Sex sometimes requires creativity if one or both are disabled. Sometimes humorous things happen, laughter creates intimacy. One participant said a spirit of fun and being flirtatious makes you less nervous

Michael Tepper runs a sex and health website.

If a nondisabled person can’t handle a disabled person in a relationship, there are probably other things he or she can’t handle.

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

SESSION VII “Where Do We Go From Here?”

The CP Group is a group of professionals, professionals defined as committed to the cause either personally as a person with CP, or as a person working in or studying areas impacting people with CP. Members of the CP Group who have CP will be “associates”; other members will be “affiliates”. Membership dues will be $25 a year. The dues for the first year was deducted from the fee paid by conference participants who become affiliates by registering on the web sites. Only associates are voting members.

A steering committee was formed. Robert Watson and David Bauer are members of the Committee and nominations for the three open positions were accepted from the floor. Nominees were –

Maureen Arcand
Beth Clogston
Dina Dror
Scherrone Dunham
John Lawton
Nicole Lomerson
Bonnie Moulton
Beryl Neurman
Christine Rouse
Leon Triest
Morris Turner

The nominees sent their bios to David Bauer. The bios were posted on the web site by the first Monday after the conference, and the results of the voting were announced the following Friday. Given that David and Robert had access to the votes submitted between Monday and Friday and were possibly in a position to influence the results of the election, neither David or Robert voted.

The steering committee will have a number of responsibilities, including (but not limited to

developing a group agenda
creating sub committees
increasing membership

Health Services CP in Movies Aging and CP Pain Discussion Surgery Sexuality
“Where Do We Go From Here?”

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