We have a hard task looking out for those with Kennedy’s Disease and/or being a carrier. Each family member reacts in their own way and we must respect that. Some will be open with their progress, while others prefer not to have any in-depth conversations. Especially when children are in that unknown zone. Should the parent tell them? If so, when? And how does one live with the ache in their heart that their child may be afflicted later in life?

Prior to our family knowing about Kennedy’s Disease, it had been misdiagnosed. So when my daughter asked me if she had anything to worry about prior to her marriage and starting a family, of course, I said, "no". It was so hard for me to tell her and my son-in-law otherwise - after my two grandchildren were born. I may not be around to see the eventual outcome for my grandchildren, but their parents are wise enough to allow their children to go for the gusto with their backing. When the right time comes, the children will be told. My daughter has tested positive as a carrier.

On another note for those who have Kennedy’s Disease progressive symptoms, don’t be afraid to inform your spouse, significant other, or parents of all the medications you are on and additional symptoms you are experiencing. This is important in case you are involved in a medical emergency and this information is necessary for your proper treatment or care.

For the spouses, significant others and parents I personally know, its hard to put yourself in the other person’s place who is experiencing the symptoms. But it is important to listen to all the bits and pieces of information and to file it mentally because this information may be helpful to that loved one someday.

My brother was in an accident and sustained closed head injuries. I was grateful that prior to the accident he had told me everything regarding his medications and symptoms. Doctors will not listen to a family member very well. Their attitude was, "O.K., so besides his head, brain stem, broken bone injuries and seizures, he has M.D." My brother was on a medication used primarily for seizures but it was prescribed for him to ease the twitching and muscle spasms from Kennedy's so he could function better. Most doctors do not know about Kennedy’s Disease and found it hard to understand this. It took almost 4 weeks of my insisting that my brother did not have seizures before the doctors wanted to contact the neurologist at the University. Then they looked at him in a different light and I believe got an education of what Kennedy’s is all about. At least what is known up to this point. Someone must be there to fight with doctors, specialists and even medical insurance over and above normal care for illness and/or injuries when one has Kennedy’s Disease.

It’s heartbreaking to watch the progression of symptoms. Our hands are tied. There is not much we can do but stand by them, respect their wishes, be there when you are needed and pray for a breakthrough in the research being done.

Of my siblings, all are affected and myself a carrier. From our Family "Kennedy’s Disease" Tree, three generations show 14 members - affected or carriers, assumed (father to daughter) or tested positive. It’s good having resources for information and sharing of personal stories. Thank you to the Kennedy’s Disease Association for being here to help support those living with Kennedy’s.