Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"You are not alone in your quest for a treatment and cure!"

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

More than you want to know.

February, 2005

We finally have a new centerpiece for the dining room and the breakfast room tables. Not only is it designed and executed as a work of art, it also is a necessary and functional addition to the dining experience. You know that things change as life progresses, but the key to maintaining that quality of life we all enjoy is the ability to adapt as the changes necessitate. This centerpiece will allow the mealtime experiences to be maintained without the interruption of excusing myself from the table. Thank you to the designer of the boxes of Kleenex.

I had been thinking about all of the conversations that I have been a part of during these last four years with you all about the disability filing process both for a private company as well as with the Social Security Administration, and have always come up with the same answer for myself: I just am not ready to turn that switch on in my head that says I’m disabled. Not that I am any better than anyone else; just that I have always enjoyed work, and I still do, but I have filed the papers as I am unable to continue at the same work.

I have fallen at times and not been able to get up, both with clients and also alone almost anywhere you can imagine. So far I’ve been lucky: only one broken foot but many sprains & strains; with the pain & swelling that would have left three weeks earlier if only I had broken the ankle. I have worn the same boots now for three weeks because the ankle swelling won’t go down to the point of letting me get back into my shoes. The cell phone didn’t work there on the floor and I was there in the lobby of that office building for four minutes before someone came by and helped me up with the "wedgie lift". That’s the next thing that I’ll patent: it will attach onto the back portion of your belt and be fully functional: the next fashion statement for me.

The fall could have happened between cars in a remote area of a parking lot and not inside of a building. I really thought I had broken the ankle since I couldn’t move from the corner where I landed and I couldn’t even turn around. Stuck there like a sack of sand. As the falls have happened with increasing frequency these last three years, it’s time to use the head and not the body. That will be a real challenge!

The transition from being physically active in the workplace to being only mentally active (yes, I hear you all laughing) will be/is somewhat easier than I anticipated. Subconsciously I realized that the transition had started weeks before the Holiday Season began this winter. One Saturday in December I proudly proclaimed that "today I am going to change two light bulbs" and immediately thought of all those ethnic jokes of years past about how many did it take to do this or that: now I’m really the joke. Good thing my sense of humor is somewhat intact. I only could get to one of them: my son John finished the task and opened a can of beer for me. Those cans are harder to open than ever: I can’t do it without a penknife, which is also harder to open too.

Bottled water! Go back in time to 1995 and imagine trying to sell bottled water. I usually have to get the store clerk to open the bottle for me. I should start to filter and pressurize cans of air and offer them for sale along with the canes in a few months. We could set up a decent filtration station along with the necessary pressurization stations and some rubes would actually buy the air from us. I buy the bottled water which doesn’t taste as good as our country well water does; you’d think that I might get the idea to take a few bottles of water from here at home with me on a trip, but no, not me. I need to be that rube who buys bottled water. Do you realize that some of it is actually city water that is filtered in some guy’s basement? "Get your fresh air here!!" It’s the future, men.

Life is a learning experience not to be missed: keep on learning one new thing a day and there will be reason for communication and discourse. I have been involved in many meetings where there have been a lot of one-sided dialogues but never any meaningful discussions. It seems that many still have learned to hear without listening. There was an ad on the radio for years in DC for the Washington Post Newspaper that intelligent, short, and wise beyond it’s targeted audience: "If you don’t get it, you don’t get it". I use this almost every day in conversation to try and make a point; unfortunately it’s beyond some to comprehend.

We went to Disney World in January with Fred’s dad Fred, as guests of Fred, Sarah and Regan and came home to 10" of snow that my son had plowed off of the driveway for us; thanks John. While there I rented a scooter which was delivered to the hotel. I never have used one before and got the hang of it quickly. I used it throughout the park, got onto and off of the busses and monorail, and had a lot of fun zooming around the opposite way in 30’ circles from Fred pushing Regan in the stroller at the front entrance area of Animal Kingdom. You should’ve been there to see the face of this 19 month old beauty, radiant with smiles as these two grandfathers had fun, until the one on the scooter decided to go even faster.

As I was going faster clockwise, I remembered that it was a three wheeled scooter only when it started to lean a little too far to the left. There were only a few people there in front of the entrance, but you could’ve won the prize for the Funniest Home Movies if you had been there and had the camera on me as I went over, flipping the scooter on top of the basket on the front, and landed with the left handlebar rammed into my chest. There is no padding there since the mastectomy; but there also is nothing they can do for broken ribs except taping up the chest, so why bother. Being a real man, I toughed it out and we had a fantastic time there for those five days, but that really hurt for the next three weeks.

Another seven inches of snow fell this week. It is unbelievable to see the bare tree limbs and branches take on another aspect that astounds the mind. Every unnoticeable detail becomes a venue for beauty. I am happy to be able to contribute something for my neighbors during this time of year since I have the tractor with the snowplow. It’s great to spend a few hours outside, sitting there, playing like I’m six years old and in the sandbox, but plowing the driveways; and it has to be a man thing, with nothing to think about except the physics of plowing and how to get the snow from here to there. After all these years here, I’ve got it down to the point where I can do it all without getting off of the tractor and changing the blade direction. I still take the cane and cell phone along just in case.

Take a look at the website for the Abilities Expos at www.abilitiesexpos.com for a list of locations and dates for 2005. I plan to introduce The Coakley Cane prototype in mid April in Edison, NJ and the production units at the one in Anaheim, CA in early June. I will check out and see what else could be helpful for us and pass on any good tips to you. Over 9,000 are expected to attend each of these two Expos, with a smaller crowd at the others. I’ve got my handicapped room reservation in NJ in a hotel about 8 miles away from the hotels adjacent to the Convention Center. Better never than late I always say. I have the plane tickets to Ontario, CA and the rental car but still need to get the hotel there as I understand that the traffic is bad especially during the rush hours. The other locations are Metro Detroit, Northern CA, Chicago Metro, and Houston, TX was added last week: stop by and introduce yourself to me please.

A few little known facts might help us all; there are 65 million of us who are 65 or older, and ½ of them will fall down within the next 12 months: those of us with KD will fall. Here’s how to lessen your chances of a fall:

Put non-skid treads in the bathtub and on wooden stairs
Add a second stair rail on the other side of the steps
Put up grab bars in the bathroom where they will help you, not where someone else says: don’t use the TP holder as a grab bar
Use higher wattage light bulbs at top & bottom of stairs
Throw away throw rugs
Lower the height of closet poles and shelves
Stop using a step stool: if you can’t reach it, have someone move it for you

I never had the privilege of meeting John Mengel, only talking with him on the phone and corresponding with him for these last four years. Truth be told, he is the one who always had the best jokes and upbeat sense of humor. He was an original and I miss him and the witty, funny correspondence that was his. He also respected the fact that I was too busy for daily doses, so he edited it down to the best ones of the week for me. He would have loved these two:

An elderly gentleman with severe hearing loss went to a new specialist who fitted him with the newest nanoscientific infared transducer hearing aid as an experiment, which allowed the gentleman to hear 100% of everything for the first time in 20 years. After a month he returned to the doctor for a follow-up visit and reported just how pleased he was with the results. The doctor, amazedly, said "your family must be really pleased with the results also" to which the man replied "I don’t know. I haven’t told them yet; I just sit around and listen to their conversations. But I’ve changed my will three times".
Two elderly gentlemen from a retirement center were sitting on a bench under a tree when one turns to the other and says, "Slim, I'm 83 years old now and I'm just full of aches and pains. I know you're about my age; how do you feel?" Slim says, "I feel just like a newborn baby." "Really? Like a newborn baby?" "Yep. No hair, no teeth, and I think I just wet my pants."
OK, OK: This is from John’s best of the best from last July. Harold was an old man. He was sick and in the hospital. There was one young nurse that just drove him crazy. Every time she came in, she would talk to him like he was a little child. She would say in a patronizing tone of voice, "And how are we doing this morning, or are we ready for a bath, or are we hungry?" Old Harold had had enough of this particular nurse. One day, Old Harold had breakfast, pulled the juice off the tray, and put it on his bed side stand. He had been given a urine bottle to fill for testing. The juice was apple juice. So ... you know where the juice went! The nurse came in a little later, picked up the urine bottle and looked at it. "My, but it seems we are a little cloudy today ..." At this, Old Harold snatched the bottle out of her hand, popped off the top, and drank it down, saying, "Well, I'll run it through again. Maybe I can filter it better this time." The nurse fainted! Old Harold just smiled.

………..Until the next time,

John