ASC-J9 Update

This is an update on Dr. Chang's research on using a synthetic chemical compound, based on a compound found in curcumin, as a treatment for KD. In 2006, the KDA provided a research grant to help Dr. Chang continue his work at the University of Rochester Medical Center.

AndroScience Corp. has applied for a grant to NIH to conduct further studies as well as have a clinical trial for ASC-J9. The KDA is supporting their efforts to move towards a clinical trial. One of the first hurdles is to have Dr. Fischbeck's team at NIH confirm the test results on their mice with KD.

This process is slowly moving forward, but we will try to keep you updated as we hear more.

That's fantastic news Bruce! If they need volunteers for the clinical trials, I'll toss my name in for the "tickle-test"


Dan.

Any thoughts on how to tell friends and colleagues about your KD? I'm 59, diagnosed about 2 years ago, symptoms for about 10 years. I teach at a university and told my department colleagues last year. For several years when asked about my difficulty with stairs, I've been just saying "I've got a bum ankle". I'm scheduled to lead an off-campus program in Asia next fall semester with 20 undergraduates. There will be lots of walking and too many stairs. I'm not sure how much information to share...
Thanks,
Mark

Hi Mark
How much you chose to share about KD is a personal choice. I have no problems laying out the disease as I know it and letting the chips fall where they may. Others prefer to share less information. It sounds like the physical activity level of your future plans is less than compatible with your present capabilities. You could alter your plans and remain private, or you could declare your limitations and work around it. I offer this as advice only, and note that the choice may be a difficult one.

Thanks Cam
I'm inclined to have a chat with my students after they arrive, letting them know I'll do my best to make it a remarkable semester but there we will parts of it that I will have to send them on ahead without me. My wife is coming with me and I have a hired assistant on all the field trips so that will help.
I feel lucky in that my symptoms have been relatively mild so far compared to others. My brother died a couple years ago at 59 after struggling with KD for 20 years.
Cheers,
Mark

Mark, I believe most of us with KD have struggled internally on what approach to take and when to take it. As Cam mentioned, it is a personal choice.

I believe that being open and honest with your students (as you mentioned above) before the trip will be helpful. It will allow you to entertain questions ahead of time regarding your physical capabilities and reasons for your non-participation on some portions of the trip. Not being able to participate in all activities might actually be a benefit. It will allow you to have more in depth discussions afterward with the students on what they saw and what it meant to them.

Personally, I found that being open and honest is much easier and creates opportunities for others to help and support your efforts. Often, knowing appeared to be a relief for several of my co-workers.

Whatever your decision, I am certain it will be the right one because you are thinking it through ahead of time. Good luck on the trip.

I am also of the thought that sharing is better. Especially, if you are away from home. I feel if your students and colleagues are aware of your condition they will be better prepared should you encounter any difficuties during your travels and they will learn more about Kennedys and perhaps help increase the public awareness along the way. As a caregiver, I hope you take advantage of the mobility aids that come your way along the trip. I feel it will make your trip more enjoyable for everyone. You, will not tire as quickly and therefore have stamina to really enjoy the things you do want to see; it will also make things more enjoyable for those that are assisting you; they don't have to see you struggle and become frustrated and if you make use of a wheelchair, you can actually assist them by holding some items for others to make carrying them much easier! Just a thought based on my own personal experience traveling through an airport with a very determined KDr. We both learned a lot on that trip! LOL!

Thanks for the support. I'm finding that as I adjust my thinking in light of my new reality sometimes dealing with it openly takes more courage than trying to hide from it. Interdependence takes practice, but as several have said it opens up opportunities for compassion.
I hope I've learned from my bother's experience. His struggle with KD was marked by depression, alcohol, pushing away those that cared about him and finally suicide. It was hard to watch, but has helped me in important ways.

Mark, your brother's experiences are not uncommon and your comment about dealing with KD openly takes courage is so true. I lived a life of little white lies for years. I told people I had bad knees. Later I made up something else. I just couldn't tell people what was happening. Once I broke the silence barrier, it was easier the second time and even more easy thereafter.

I believe that most of us with KD have found people to be very helpful and supportive once they learn you are accepting of help. I make it a point of letting people know when I do not need help and always thank people who offer to help. I have also learned that by telling people of my physical limitations that new doors have been opened. On business trips people found ways to accommodate my physical limitations while still keeping me involved.

I also found that overcoming my ego was more most difficult than any physical limitation I was experiencing. I have several stories of broken bones or minor injuries where I was too proud to say something and the result was an injury. I found it most interesting, about these particular times, was that my injury caused others to change their itineraries to accommodate the injured me. If I would have been open about my limitations up front, none of them would have occurred. Unfortunately, I am not a quick study and it took several of these events to finally make me come forward.

Mark, I am sorry to hear of everything you and your brother went through. Your comments brought a thought to mind and I apologize if you feel I am intruding. If I am, please let me know. As a wife of a KDr and given what you have said your brother experienced, I truly hope that by participating in these forums that we are able to offer you the friendship and support you need to help you through your difficult times.

cdh
Given the rarity of KD, a forum such as this seems especially important in sharing information, support and personal stories. Both my brother and uncle were misdiagnosed as suffering from ALS before eventually learning of KD.
Thanks to all involved in the KDA.

Mark, I'm glad to know you feel the forums are helpful. My husband,also had a cousin that was originally misdiagnosed as having ALS. It seems we hear of that happening much more often now. Hopefully, we will be able to raise more awareness in the medical community in the future.
Carla

quote:

Originally posted by Bob Heitzman:
Make sure your doctor's are aware of the issues surrounding anesthesia for SBMA patients. The current newsletter had an article with more [URL=http://www.kennedysdisease.org/research_medical.html]here[/URL.

Just a quick update about my husband, Terry's upcoming surgery (June 8th). Yesterday we had our consultation with the anesthetist on Terry's surgical team. I was surprised and excited to hear that there has been a very recent study published in the Canadian Journal of Anesthesia - Feb/09 on six patients with confirmed KD who underwent general anesthetics for surgical procedures. Unfortunately, this study isn't available online yet (at least, I couldn't find it), but I did briefly peruse the article yesterday in the journal and it appeared to be very thorough (and was reviewed by Dr. Wm Kennedy himself). After discussing this study and the upcoming plans for Terry's surgery with the anesthetist yesterday, my husband and I came away feeling very reassured and confident that his special anesthetic needs are well understood and will be met. I cannot tell you how relieved I am that this study just happened to be published at this point in time!! When it becomes available online, I hope it can be added to the Anesthesia Alert link on the KDA homepage.

Robbie2, It's good to hear from you! I hope all goes well with your husband's surgery. We'll keep you in our thoughts! Thank you for posting the additional anesthesia information. We will be sure to take a look at it. Carla

Robbie, I am certain both of you are a little apprehensive right now. We will keep you in our thoughts and prayers.

Please keep us updated.