Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW
Prader-Willi syndrome was first diagnosed in 1956; only 63 years ago. With supportive living and specialized care, we are now seeing individuals with PWS living longer and healthier lives. Susan Booth (Boothie) is one of those people. Susan was born March 18, 1950 and diagnosed with Prader-Willi Syndrome in 1963, at the age of 13. Susan recalls being told she had Prader-Willi syndrome and that she would “have to live with this for the rest of your life;” and that she has. On September 2, 1963, Susan moved to Riverbook Residence in Massachusetts. Today, Susan is 69-years-old and continues to live a happy and healthy life at Riverbrook Residence.
When asked, what has been the hardest part of having PWS? Susan stated, “Not having a lot of food in front of me.” Susan admits it has been a struggle staying away from food, staying out of the kitchens, and learning what foods are best for her. She states the most helpful thing for her has been having a supportive environment with the refrigerator and cabinets locked; removing the temptation for food.
As we are seeing individuals aging with Prader-Willi syndrome, many families, parents, and guardians are faced with the thought of placing their loved one in group homes or supportive settings. For Susan, living in a structured group home setting improved her quality of life by always providing her 24/7 support. The community Susan has grown up in has afforded her opportunities to live her life, not having to worry about access to food.
To keep herself healthy, Susan exercises as part of her daily routine. She walks on her treadmill every day, walks dogs, and enjoys going to Tai Chi at the local Senior Center. She also finds keeping herself and her hands busy throughout the day has helped her stay strong and healthy. Susan enjoys working on word puzzles, hook rugs, and knitting; she states she even taught Elizabeth Ruth to knit. She also keeps busy by working at Riverbrook on Main where she works on mailer. She is also active in her community church where she is a reader. For Susan, staying active and being involved in her community is very important and has helped her in living 69 years with Prader-Willi syndrome.
Susan’s advice to others with Prader-Willi syndrome is to “always keep busy with your hands, go for a walk, visit different places like parks and museums; stay active. Her advice to those who don’t have Prader-Willi syndrome is to help their loved ones by keeping them busy and taking them to different places.
Susan, how do you feel about being one of the oldest people with PWS? “I LOVE IT!! I am proud.”
What would you like others to know about you? “I would love to have a PWS pen pal.”