Unfortunately, when our son was diagnosed with ALD I found that there was very little information available that was actually useful. Most doctors we saw had little or no experience or education about ALD, so how could they offer us advice?
Again, the frustration was overwhelming amid the chaos. Here are some things you can do that might ease the frustration and guide you to organizations that can be of assistance. Be sure to check out the “educational links” page for lots of other helpful information.
• Contact your local Regional center and apply for respite help. You will need some time to take care of yourself so you can take care of your family. Even a trip to the grocery store can be taxing sometimes.
• Get a referral from your physician to an occupational therapist and a physical therapist. You may think you don’t need them now, but they can assist you and your family in learning other ways to communicate before it becomes too difficult. The physical therapist can show you ways to keep the muscles strong and how to help ease spasms. I also recommend using soothing aromatherapy massage oils.
• If you want to learn as much as you can via the Internet, I suggest you get the book “Adrenoleukodystrophy - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References.” You can order it at www.amazon.com.
• Contact the Make A Wish Foundation. They grant wishes of children with life-threatening medical conditions. They sent our family to Hawaii and we will cherish those memories for a lifetime. Your child does not have to be advanced in the disease to qualify, so don’t delay. If you can, get your neurologist to give you a letter describing the diagnosis and prognosis so you have it on file. Often things are delayed because the doctors office may not respond to these requests in a very timely manner.
• Check with your local hospice organization. They have many resources that can be of benefit to your child and your family. They sent a counselor to our home weekly to spend time with our daughter, Amanda, doing art projects and playing games to help her understand and work through her grief about her brother’s illness. Home nursing assistance is available and in-home care is provided as needed. They helped us in so many ways, I can’t imagine what we would have done without them Their assistance enabled us to care for Sawyer in our home for the duration of his illness, which meant a great deal to us.