Why wouldn’t they include her, that’s a given right? Well, not necessarily. Gretchen was also born with an extra chromosome at a time when conventional wisdom was to exclude people who have Down syndrome to the point of institutionalization.
In 2007 things started to change for Gretchen. Tasks that she had been used to completing independently became more difficult. She need more help remembering and making good, safe choices. Within a few short years, the diminishing affects of Alzheimer’s disease have changed her, physically and mentally. Gretchen’s family is now faced with difficult decisions regarding their sister’s medical care and quality of life, in ways that they have not had to before.
During this remarkable interview, I sat in awe as I listened to Gretchen’s story as told by her sister. There was no hint of “burden” that people (outside our community) insist on inserting into our narrative. I didn’t get the feeling that Gretchen’s sisters resented the extra time or attention she may have needed. I didn’t hear a long list of things that Gretchen could not do. Instead, I heard a story of love and understanding, acceptance and support.
We spent so much time talking about Gretchen’s accomplishments and successes that we ran out of time to talk about the recent developments in her health and ended up continuing the conversation way past the scheduled two-hours.
There is no doubt that Alzheimer’s disease is devastating, not only for the person who is diagnosed, but also those who love them. Hearing Patty talk about the changes she and her sisters have seen Gretchen go through is painful, and scary. But I’m extremely grateful for the opportunity to listen and connect a personal experience to the scientific information being presented this week. Gail and Patty did a wonderful job giving a voice to the power of narrative.
As a parent of an adult who happens to have Down syndrome, there were a few points that Patty made that struck deep chords in my own life with Josh. One was how Gretchen’s family used “natural” supports to help her rather than “government approved and controlled” ones that I think are so important. For example, to combat the weight issues sometimes associated with Down syndrome, Gretchen and her mother attended Weight Watchers together where she learned about eating healthy and portion control. As a result, Gretchen has never had a weight problem, or the sleep apnea or other issues that can go along with it.
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Where Do We Go From Here?
Gretchen and her family have a difficult road facing them like so many others who are dealing with Alzheimer’s disease. We can all do what we can to support them and other families with research, better health care options, and increased understanding and support.
There may even be ways to get Gretchen’s incredible story the attention and audience it deserves. I plan on working with Gail and Patty in the future towards that end. The Josephson’s story needs to be told, and heard not only by those of us in the Down syndrome community, but by everyone who doubts that people who have disabilities are ‘more alike than different.”
To listen to the recorded show, visit Gail’s BlogTalkRadio site.
This exciting week continues tomorrow as Gail interviews documentary film maker BANKER WHITE about his films in general and specifically "The Genius of Marian" about his mother's journey with Alzheimer's. For more about this upcoming interview, see Gail's article on Demand Design.