She could teach me how to run

Several times a year I receive emails from family members that are living with Kennedy's Disease. They are normally from teenagers and young adults who have a father with the mutation. They are trying to fill in the gaps of what Kennedy's Disease is, how bad will it get, is there anything they can do to help, and occasionally asking why won't their parents talk to them about this. Yesterday I received another email from the son of a man with Kennedy's Disease. Following his question below is my answer (amplified for this blog).

"Thank you for all the time and effort put into your blog. My father was recently diagnosed with the disease and your blog was a wealth of insight, information, and comfort.

From a selfish position, I was wondering if you have any insight to what your children (or anyone else's children who have been affected by the disease whom you are in contact with) have gone through. It is difficult to accept that your father will become physically weaker over time. Any help or insight into coping with that and assisting both parents would be greatly appreciated."

The subject of "children" is an interesting and complex one.  The answer really depends upon the age and maturity of each child and how open the parents are to discussing the situation.  For example, my two grandkids (many years ago when they were pre-school and early grade school age) asked a few questions (why I could not get on the floor to play with them, etc.). When I explained the problem to their satisfaction, they just seemed to acknowledge and accept that grandpa was a little different (my wife has told me that for years). They thought I was still okay, however, because I bought them ice cream when they were not supposed to have it. 

I used a similar strategy recently for the two young children of friends who were also curious.  (Of course it does not hurt that I have a cool wheelchair and I take them for rides)

The explanation I gave these youngsters was that a part of my body (something inside me) is broken. Doctors do not have a way to fix it right now. Until they can fix it, my muscles just do not want to work the way their muscles do. I also explained that is why I use a wheelchair because it is difficult for me to walk. I told them no matter how weak my muscles became, I would always be their friend. I further explained that even though I can no longer pick them up, I still give great hugs (and then asked for one from each of them).

After listening to my explanation, our friend's daughter replied that she is a good runner and is very fast. If I wanted to, she could teach me how to run (the innocence of a child). 

I have found that the older the child is, the more difficult it is for him/her to accept the situation. I believe this is because he/she see (or imagine) the suffering the father is going through and the strain it has placed on both parents.  Additionally, older children and young adults have seen the progression of the disease over several years and the devastating impact it has had on the father.

My advice for children remains the same (changed slightly depending on specifics). In every aspect except for mobility and some strength/dexterity issues, your father is still the same man he was before Kennedy's Disease.  Yes, he is traveling through uncharted waters and he is struggling with acceptance issues and concerns for the future. However, he is still the father that raised you and he will always love you. These things will never change.  If you treat him differently or feel sorry for him, you are doing him and your relationship a disservice. 


My final recommendation is that you talk with him ... ask him questions and express your concerns.  He might not be ready to talk about it yet, but he needs to know the uncertainty/fear you are experiencing and that you want to talk with him more about this health issue when he is ready.  In addition, you mother is learning a whole new set of skills with the progression of the disease.  Do not be afraid to bring the subject up with her also.  She also needs your support also. 

Of course, this is my personal opinion based upon my experiences.  It is not a professional opinion and I have no training in this area.  If you continue to struggle with this, I would recommend some counseling.  A professional can help you come to terms with your concerns and perhaps help bridge the gap between the fears/concerns and the reality of living with Kennedy's Disease.

I hope this helps.  If you have other questions, please do not hesitate to ask.

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Readers, I could use your help with today's topic. Most of us living with Kennedy's Disease probably have some experience with this subject. Please consider adding your two-cents in the comments section below; or send me an email and I will add your thoughts to this article (anonymously).

• How did you explain the experience to your children (grandchildren)?
  
• What age(s) were your children (grandchildren) when they first began asking questions?
  
• What were their greatest concerns at the time?
  
• As they became older, did they want to know more about the disease? If so, what were their follow-up questions?
  
• If you had to do it over again, what would you do differently?
  
• Do you have any other recommendations for managing this situation?

I would value your thoughts on this important subject. Thank you.