Exercise for my daughter can be a tricky thing. My daughter has a neuromuscular disease and uses a wheelchair. The wheelchair is her main form of mobility. I worry a lot about her heart health because she does not move as much as other children do and gets fatigued easily. It is a constant struggle to balance, but once I figured out how to use assistive equipment, her energy increased and the equipment helps a lot with conserving her energy.
When she walks short distances in our home, we make sure she has her ankle-foot orthosis on. She also uses a walker. These two pieces of equipment help hold her up so that she can walk and still have energy for the rest of the day. Walking is a great exercise for the heart. There are also standers and gait trainers. Working with a physical therapist can help so much too. Be sure and check cost and insurance coverage.
On days she is weaker and unable to do weight-bearing exercises, we do “in chair” exercises. She has a self-propelled wheelchair and can wheel herself for some cardio and arm exercise. We have a lightweight bouncy ball that she can toss or kick with another person. This is a fun gross motor, accessible activity. Bubbles or balloons can also be used for tossing, popping, or kicking. Beanbag toss is another accessible gross motor activity. All of these can be done from a sitting position.
It is important for all children and adults to have physical activity. With a little creativity, I have been able to do activities with my daughter to get her heart pumping. Some communities are putting in accessible parks, too. Going outside for exercise is fun all by itself and even more fun at a park. If you are able to get some equipment it is so helpful as well.
Remember, even if you cannot afford the expensive equipment, you can make inexpensive fun games up at home. Anything that gets your child moving their bigger muscle groups will help keep their muscles and heart healthy!
Visit the Family Support section of this web site for more information and ideas on assistive equipment.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.
Giving yourself permission to take the time you need when you are ill can bring about good, healthy outcomes.
Categories: Diagnosis & Health Care
My son is 7-years-old and still drinks from a bottle. We didn’t plan this, and we have tried to work around it. But the bottle gives him the flow control he needs to digest liquids properly.