It seems that BBS folks have so much to deal with: diminished vision or blindness, bladder & kidney problems, lung problems, diminished or heightened pain response... so many very major issues, that sometimes it must be difficult to remember or simply have the time to think about the importance of establishing and maintaining a healthy lifestyle.
Beginning with basic ADL's: Activities of Daily Living, such as regular daily hygiene (showering), good dental care - brushing teeth at least morning and before bed (the dentist at Chapel Hill suggested that since BBS folks often have overlapping teeth and other dental issues, it's good to use a mechanical toothbrush with a 2 minute timer, and a plaque control mouthwash), eating a healthy, varied diet including fresh fruit and veggies, limiting fats and refined sugars, and getting some exercise in most days - walking is a good and inexpensive way to get exercise.
Working with a good nutritionist who is willing to become educated about BBS is a good thing to consider. They can educate, suggest options, and help monitor a healthy eating regimen. It's harder I think for BBS folks to deal with the obesity issue, when often times they don't experience feeling full. A really good nutritionist can help with portion measurement and calorie/fat control. Also, most nutritionists can bill third party payers.
Exercise is often difficult, too. Some BBS folks have not only vision issues, but also gait problems secondary to the all too frequent scoliosis, and walking on potentially uneven surfaces such as sidewalks can be an obstacle to this aspect of healthy living. Many hospitals have wellness clinics that sponsor mall-walking with a kiosk staffed with health personnel who encourage and support folks who need to walk in a controlled environment such as a mall. Some even give out free water bottles and tee shirts.
I'm sure readers of this blog will have their own ideas on how to positively support our BBS family members in establishing and maintaining a healthy lifestyle while dealing with those more major health issues as they crop up. I hope you'll add your ideas and thoughts here.
Make it a good day!! :-) Teresa
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