Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
At an Annual NTSAD Family Conference, families discussed complementary medicine in the Health Management session. It was a lively and rich discussion that continued in Facebook groups and blogs. Complementary medicine generally refers to using a non-mainstream approach together with conventional doctor care. And the boundaries between complementary and conventional medicine overlap and change with time. For example, guided imagery and massage, both once considered complementary, are used regularly in some hospitals to help with pain management. "Anything that stimulates their senses and takes them away from their bodies or soothes their bodies is awesome and worth a try," said Elaine Martinez, Ezra's mom.
Massage Therapy is one of the oldest healing arts with records dating back 3,000 years with benefits for many symptoms associated with Tay-Sachs and related diseases.
- Alynda Lindley became a massage therapist after seeing how much her son Kylee enjoyed massage therapy.
- Kalah "Williams" Matthews: Massage twice a week was a miracle for her body comfort, made her easier to handle and move. She never needed any kind of pain medication or muscle relaxer.
- Jack Boyce enjoyed massage from a very early age. Hands and feet and more than anything stomach massage to encourage him to have a bowel movement.
- Isaac Sandoval usually enjoys a massage. We also do sensory integration prior to encourage alertness using the Walbarger Protocol.
Acupuncture and Acupressure use the same pressure points and meridians but acupuncture uses needles, while acupressure uses gentle to firm finger pressure. Stimulating these pressure points and meridians encourages the body to promote natural healing and improve function.
- Kalah "Williams" Matthews: Acupressure did an amazing job calming seizure activity.
Music Therapy is an interpersonal process in which the therapist uses music and all of its facets-physical, emotional, mental, social, aesthetic, and spiritual-to help clients to improve or maintain their health and enrich quality of life.
- William loves his music therapy. We have his music therapist come while he is doing PT as he is so relaxed during music therapy that he works better for his physical therapist.
- Ezra relaxes listening to the Qur'an. Our holy Qur'an is recited in a very melodic way and it calms him
Water or Aquatic Therapy attempts to promote range of motion and improve overall health through the soothing affects of water. Heated or warmed pools are preferable.
- Water therapy gets Isaac Sandoval so relaxed and allows him to move more easily.
- Jacob Jones loves water therapy!
Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes horse movement as part of an integrated intervention program to achieve functional outcomes. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning.
- Lilliana has been doing hippotherapy for two years, she is more vocal and it loosens her muscles. And without a doubt she poops after!
Other types of complementary medicine often used by NTSAD families include cranial sacral therapy, vision therapy, chiropractic, Reiki, yoga, aromatherapy, healing touch and more.
Thank you to Jan Marquez, Lorelei Sandoval and Oralea Marquardt for the leading the Complementary Medicine discussion and sharing their experiences incorporating complementary medicine into their child's care routine.
A film for families
The trailer is also available on You Tube - Parenting a Child with Life-Limiting Illness
Host a Screening Party
Increase the awareness of the family experience by hosting a screening of this film. Read more Host a Screening Party
For the Family - Order Your Copy
Complete the Parenting Film - Family Order Form or print Order Form and mail
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Professional - Film Order Form
This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly diagnosed families experience and to give them genuine hope that they will survive. The parents featured are coping with the devastating diagnosis of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1, but the issues they discuss are universal to any life-limiting illness. Their comments are deeply personal, unaffected, insightful, and courageous as they share the intimate story of how they coped with their child's life-limiting diagnosis, tend their marriage, care for their other children, involve friends, engage palliative and hospice care, and make difficult care choices. Even as the perspectives are varied, two themes are common throughout: the importance of connecting with other families and their certainty as parents of their ability to love and care for their children through the entirety of their lives.
It is this intimate portrait of family experiences, emotions and needs that also make this video valuable as an education tool for providers who support these families, including pediatricians and palliative care doctors.The DVD arrives packaged in the Resource Guide. The DVD includes both the Family version and the slightly shorter Professional version. The Resource Guide features glossary of terms, commonly used special equipment as well as discussion questions for using the video in a professional development setting.
Families and professionals are encouraged to share the film with their communities. Check back in September for resources to help you host a screening.
NTSAD is deeply grateful to Genzyme, a Sanofi Company, for the generous Patient Advocacy Leadership Awards Innovation Grant to support this project.