More MS news articles for August 2002

Staying Connected,2265,32924820,00.html

June 1st, 2002
Written by: Campbell, Teresa
Real Living with Multiple Sclerosis
ONE DAY, as I read Connections (the publication of the Northern California Chapter of the National Multiple Sclerosis Society [NMSS]), my attention was drawn to an advertisement asking for volunteers for the Phone Buddy Program. It sounded like something in which I'd like to participate.

The program began after individuals repeatedly called in to the chapter office want ing to talk with others with MS. A retired clin ical psychologist recognized the need and helped nurture the program to fruition. The Phone Buddy Program is more individualized than a support group meeting, with individuals sharing on a one-to-one basis.

I called the designated contact person and was informed that I would have to sign a contract stipulating that I would talk with my phone buddy at least once a week for 1 year and maintain the confidentiality of the calls.

The length each phone call would last depending on my contract with my phone buddy. I'd also be interviewed on the phone before I was accepted.

Weeks later, a woman telephoned me to discuss the Phone Buddy Program. I was asked about my education, work experience, and why I wanted to be a phone buddy. She responded that I sounded appropriate for the program and that I'd receive a manual in a few days.

The manual contained a wealth of information about communication skills and how the program worked. Volunteers are responsible for initiating calls and focusing their attention on participants. The participant can discuss what he or she wants with someone who has chosen to offer a friendly, supportive ear. The manual also contained a list of guidelines for the program. I signed the volunteer agreement form and returned it to my supervisor.

A list of the 10 volunteers with whom I'd share a conference call once every 2 months was included with the manual. This would be a time to share problems/concerns with others.

I requested to be assigned one phone buddy in the area where I lived while other volunteers asked for two or three. If someone wanted to have a phone buddy in an area far from where they live, phone calls would be reimbursed by the NMSS.

Working the Phones

About the time that I volunteered for the program, Anna called in and requested a phone buddy. She's a married woman who was having difficulty managing work and raising her 3-year-old son. Anna's relapsing-remitting MS made her feel very tired. She experienced stress from her workload and was concerned about new symptoms she had developed.

We discussed her options, and I mentioned Social Security Disability and the possibility of retirement. She was interested and immediately investigated it. She was also interested in having another child and we discussed the pros and cons of that choice. She wanted to take one of the ABC (Avonex, Betaseron, Copaxone) drugs, but couldn't if she wanted to become pregnant.

In a few months, she was pregnant and also receiving Social Security Disability. During her pregnancy, she had some complications and we discussed how she handled them. As an intelligent woman, she had many answers and just needed support in doing what she planned.

Over time, changes have occurred in the contracts between phone buddies and participants. I have much in common with my buddy and we often talk about our interests and goals. For the first year of our contract we talked for an hour every week and now talk for an hour every 2 weeks. One phone buddy became such close friends with her buddy that, when she dropped out of the program, she continued seeing the woman as a friend. One participant moved to another state and her phone buddy is E-mailing her once a week.

Some members had difficulty, either because of language or other reasons, in establishing a working relationship. They were given the option of having another person assigned to them and usually chose to continue with the program. In some instances, our supervisor would call the participant to see if she could identify the reason for the individual not keeping telephone appointments or communicating with the phone buddy.

Our telephone conference calls were a time to check in with what we were doing but also a time to learn from each other. One participant was from another country. I was interested in learning how her cultural beliefs influenced her acceptance of MS. Another phone buddy was still working as a teacher and was able to obtain long-term health care insurance.

Another shared information about how she was able to help an isolated woman obtain ramps for her house. One man discussed how he helped his participant accept the need to enter a care facility. Because all phone buddies have MS, we sometimes discuss problems that are related to the disease and how it affects us.

The Phone Buddy Program has been rewarding for me. If you want to volunteer as phone buddy or have a phone buddy contact you, contact your local chapter of the NMSS. If your chapter does not have a Phone Buddy Program, you can help initiate one by contacting the NMSS at 1-800-FIGHT MS.

© 2002 Real Living with Multiple Sclerosis