Early on-set Alzheimer’s challenges legendary basketball coach Pat Summitt
The news is everywhere. Pat Summitt, a virtual legend in women’s basketball who has won more games in her coaching career than any other college coach, has been diagnosed with early on-set Alzheimer’s disease. The news is rocking the college sports world because it seems so unbelievable. This active, healthy, intelligent woman, just 59-years-old, now has a brain disease that will forever change her life.
ABC news reports that, “After months of memory lapses, Summitt recently visited the Mayo Clinic in Rochester, Minn., where doctors diagnosed her with a rare form of Alzheimer's-type dementia that strikes people younger than 65, who often have a family history of Alzheimer’s disease.”
Early on-set Alzheimer’s often has a genetic link
The Mayo Clinic website says that only about 5 percent of the people who develop Alzheimer’s disease do so before age 65, and they also say that early on-set AD often runs in families. The family factor is what makes adult children of those who have had early on-set AD so nervous. Is it in their genes, too?
The Mayo Clinic site is quite specific about the genetic risks of early on-set AD. According to the site, “… three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have a genetic mutation in one of those three genes — the APP, PSEN 1 or PSEN 2 — it would be common for you to develop Alzheimer's before age 65.”
Should you get tested?
Getting tested very early for a disease that has no cure is something to think about carefully. There are genetic counselors who can help you make the decision as to whether it would be helpful to know whether or not you carry the genes responsible for early on-set AD.
Unlike, say, breast cancer, where women who carry a high-risk gene can have surgery to lower their chances of getting breast cancer, at this time, other than leading a healthy lifestyle, there is little you can do to lower your chances of getting the AD.
Of course, an early diagnosis is helpful in that there are medications that can, for many people, slow the progression of the disease. Also, if you are diagnosed early, you will have more time to plan for your family’s care and for the care you feel you’d like to have as your disease progresses.
However, if you are twenty years old, do you really want or need to know? There should be huge progress in prevention and/or cure for AD before you would be diagnosed with the disease. Maybe, if you are 40, you’d like to be tested. Each person must decide, preferably with medical guidance, whether testing is right for them.
Is there life after diagnosis?
Early on-set Alzheimer’s is particularly devastating in that it happens to people in their prime. As in the case of Pat Summitt, plans often must be put in place to help with, or alter, a flourishing career. In Summitt’s case, she will have to be told, gracefully, when she can no longer coach at all. This is painful for anyone who strongly identifies with the work they do.
It’s also a financial blow when a family breadwinner is diagnosed with early on-set Alzheimer’s. Statistically, couples have been having their children at a later age than they did in the past. This means that many people who are diagnosed with AD are still raising teenagers. AD takes a huge financial toll in and of itself, but when it takes out a breadwinner mid-career, the family may never recover financially.
Summitt’s son is only 20. His mother is a fighter, but eventually he’ll have to cope with the devastating losses his mother will face. My heart goes out to him. He has said that they work as a team. That is wonderful, since teamwork – which is one of Summitt’s many strong points – will be necessary as AD slowly or quickly, depending on her unique circumstance, continues its malicious progression.
My hope is that Summitt’s friends and family will preserve her remarkable life in saved clippings, taped games and other visuals, so that this talented woman can be reminded about how much she has contributed to the world. Because she, just like any one of us who could be in her shoes, will likely one day not recognize herself.
Summitt’s legacy will continue in those she’s coached and the people she has worked with. Her loved ones will have the task of providing her with the best quality of life she can have.