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Archives - 2015 and Older Transcripts

Topic: Exercise Study Review
Guest: Christopher Grunseich, MD
Host: Ed Meyertholen
     
Hugo Rodriguez Good morning Surfman, how do you doing?
sfurman   Good Hou are you today?
Hugo Rodriguez Good morning Bruce, is everything OK?
Bruce   Morning Guys, doing well thanks.  How are you?
Hugo Rodriguez Well Bruce, thanks. How are you?
Hugo Rodriguez Do you know about pain in patient like us?
Bruce   What kind of pain?  Where do you have it?  And, how often does it happen?
Hugo Rodriguez For the last weeks, so often I have been suffering with pain in the lower part of my back, that could be associated with two disc hernias I’ve in the lumbar region, but these hernias have been there for a long time (more than 5 years).
Bruce   KD might be associated with it only because the back muscles weaken over time along with most of our other muscles.  What does your doctor say about it?
Hugo Rodriguez Well, neurosurgeon recommend me to attend rehabilitation, that I haven't tried
Hugo Rodriguez I will not wait more. As per yo
Bruce   I have found that by stretching and performing light exercises, my back muscle strength has improved.  I would recommend that you listen to your doctor and give a physical therapist a try.
Hugo Rodriguez As per your answer to my question, the pain must be related with the hernias, thanks a lot.
Hugo Rodriguez Good morning Rod
Ron M   Hello Everyone
Hugo Rodriguez Hi Ron, please excuse my typo.
Ron M   Not a problem Hugo. How are you
Bruce   Most of the pain I have experienced has been associated with deep muscle aches.  More recently neuropathy has become an issue and one that I have worked on fairly successfully.
Bruce   Morning Mike
david   Good morning
Hugo Rodriguez Fine enor
Hugo Rodriguez Fine enough, thanks.
MikeG   morning Bruce
Hugo Rodriguez Today we are going to know something about the exercise trial, are not?
MikeG   hi Stewart
Ron M   Yes, I can't wait. Always been curious
MikeG   when are you heading over to FL again?
Bruce   Austin, MN, my home town.  Always brings back fond memories.
Stewart   Goodmorning it's been awhile
MikeG   what a rainy day in FL we have... :(
MikeG   ... but we needed it.
Bruce   Gorgeous here this morning
Stewart   Hi Mike for sure I'll be in Florida in August
MikeG   Hugo, are you still walking?  I had pain in my lower back until I started using my power chair more often.
Ron M   I hate to admit this but I don't exercise so I a hoping to get some motivation today. Are most of you taking the time to exercise like Bruce?
Gary_KC   Good morning. This is Gary joining in from Kansas City.
Bruce   Ron, I love to exercise ... because I see the benefit.  If I didn't, I probably would find it hard to do it every day.  It has become a routine.
Ron M   Mike, you shouldn't feel left out. It has been raining in Illinois for 2 weeks. I have had enough my friend
MikeG   okay, Stu.  Paul and I wanted gto get together with you and Connie but we may go soon and then again in August when you get here.
Bruce   Hey, Gary, how are things?
Ron M   Bruce, I got to find a way to get there. I know you are consistant. I just start and stop.
Hugo Rodriguez Mike, Iám still able to walk, few times in a week but long distances (about two or three miles)
Bruce   Morning, Ed
EdM   good morning everyone
MikeG   that great, Hugo!
chrisgrun   Good morning !
Gary_KC   Hi Bruce, I am fine thank you. It is a nice day in here.
EdM   HI Chris
david   I exercise regularly using moves suggested by Bruce, the NIH trial moves, and some developed wotking with my physical therapist.  All in all I have experience gradual, steady improvement with strength and stability.  I started out slow as Bruce suggested and then have learned for times that I push too hard.
chrisgrun   Hope everyone is doing well
Bruce   Ron, begin with some small exercise routine that you find enjoyable.  Make that a habit and then progress from there.  If you want, we can talk about it off line if that would help.
chrisgrun   That is good David, how long have you been exercising?
MikeG   hi Chris, great to see you here!
bcpaul   morning all from BC
david   Chris I have been working on the program for over 4 years now.
chrisgrun   Great to see all of you here also. THe exercise trial is done so I can update you with some results
Ron M   it has Its helped you then David?
Hugo Rodriguez Good morning Dr Grunseich
Bruce   David, exactly ... once it is a routine it is easy to add or change particular exercises to address your needs.  Good going, guy!
Bruce   Looking forward to it.
cdharris   Good morning.
chrisgrun   Good morning. Yes 4 years is a long time. Are you keeping track of your functioning in a diary?
david   Ron M it absolutely has helped me.
chrisgrun   We had great participationg from all of the participants in the exercise study.
Bruce   Chris, I keep a daily journal and it helps me see where I am and what is happening.
chrisgrun   there were two groups that were evaluated- one group doing stretching exercises and the other group doing functional exercises
EdM   So Chris,  what can you tell us about the trial?
Ron M   Bruce, that would be great. Some how I have to be more consistant. Is it ok if I give you a call sometime?
chrisgrun   That is good Bruce, keeping track is very important.
david   Chris yes I started a daily chart this year and have room for notes.  I also have the periodic reports from my Physical Therapist
chrisgrun   The primary outcome measure for the study was the AMAT (adult myopathy assessment tool)
chrisgrun   We did not see any significant changes in the AMAT score in either the stretching or functional exercise group with the 12 weeks of exercise
chrisgrun   THis means that the p value of significance was over 0.05.
Bruce   Ron, please call.  Email me through the KDA and I will respond with my phone number.
cdharris   I participated.  I completed the triial over 1 year ago.  I did not feel the execise increases my strength.
chrisgrun   If the p value for our analysis is less than 0.05 than we can say that it is statistically significant.
Ron M   Bruce - ok
chrisgrun   In the functional exercise group the total AMAT changed by less than one point, and the functional AMAT score increased by 0.7 points.
chrisgrun   In the stretching group the AMAT total increased by 0.15 points.
Hugo Rodriguez interesting
Ron M   Chris - can you give me  an example of what is a functional exercise?
EdM   Chris, is the AMAT the set of functional tests that includes sit ups, push ups, etc>?
Bruce   Chris, can you break this down to something I can understand (good, bad, not significant, etc.) :-)
chrisgrun   The p value by which we measure the significance of any effect was most significant in the functional exercise group when we looked at their functional AMAT score. THis p value was 0.06
chrisgrun   the AMAT is a set of activities that closely resembles the functional exercises.. pushups,.. heel rises, lunges
chrisgrun   Sure Bruce, overall the exercises did not produce a significant effect
Bruce   Thanks
chrisgrun   Overall, there was a significant effect on the CK in the functional exercise group. The CK (creatine kinase) increased over the 12 weeks in the functional exercise group.
chrisgrun   THis tells us that compliance was pretty good and that the exercises were having some effect on the muscle.
bcpaul   I took part in the stretching trial, after my part was complete, I started more vigorous exercise and found my mobility has improved dramatically, but my strength is much worse. Is there anything from your research that may point to strenuous exercise exacerbating the muscle wastage?
chrisgrun   since the subjects were not getting stronger or weaker, we are not sure at this time how to interpret the CK change.
BobK   Morning from Toronto, raining and cool, but at least it's looking like spring possible for 2014....
Bruce   I find it interesting that when I changed my exercise program to the one recommended by my PT, my CK declined to almost normal levels over time.
EdM   Chris, would you expect CK values to rise if you were comparing two non-KD groups?
david   Chris, if I remember correctly part of the study included gathering information from participants as to the effect, did most comment positively or negatively
chrisgrun   Strenuous exercises may be too much for some individuals, it depends.
EdM   Rise in those doing functional exercises, that is
chrisgrun   Yes Ed, it is possible that the CK would have increased in non-KD individuals over the 12 weeks. THis is a good point. It could be a normal response to the exercises.
Bruce   Ah, that is the answer that I experienced.  I had to chance my program to make it consistant with my current capabilities.
chrisgrun   Yes, David, we are looking at the information submitted by the patients to identify those factors that would predict benefit or worsening with the exercises.
EdM   I know that my CK rises and falls based on the severity of my exercising but overall, my CK levels have been realively steady for over 10 years
chrisgrun   It looks that the CK that someone starts out with may have some effect on improvement with the exercises, particularly in the stretching group.
Hugo Rodriguez Would be interesting to know what exercises could help in depleting the CK
chrisgrun   THose with a higher CK seemed to be more likely to have a drop in their AMAT test over the 12 weeks of stretching exercises.
carofer   Chris, will the results be published, where and when?
cdharris   I was in the exercise group.  I was working out with a trainer for over 10 years until December, but I have been taking it easy the past few months and I actually feel better.
chrisgrun   We do not know if there is any benefit in lowering the CK, it seems to be higher in some subjects who are also very strong.
david   Chris I have found that if I push to much either during a PT session or just doing more than normal in any given day I will experience siginificant pains for a day or two, so slowly I have learned to not push as often
chrisgrun   Yes, it is important to recognize the limits, and not exceed them.
Ron M   Chris - I am wondering about the time - 12 weeks. Can u talk about why 12 weeks. Do u think there mcould be different results in a trial that was 6 months or 12 months?
chrisgrun   We would not be able to recommend a specific type of exercise based on the results of this study, but we can say that we did not see any significant worsening in either group.
MikeG   go question, Ron.
MikeG   good
bcpaul   I have found that when my exercise routine has a cardiovascular compoment I tend to do much better, did the exercise portion of the trial include a cardio workout?
EdM   I find that if I take 2 or 3 days off of exercising, I feel worse when I exercise than if I exercise daily. (I hope I said this clearly)
Bruce   Yes, you did, Ed.  That is why I exercise every day.
chrisgrun   Yes, 12 weeks is based on the time frame studied in other exercise studies. THe compliance is found to drop off after this time. We believe that the disease will not progress significantly in 12 weeks so any changes from the exercise can be more easily studied.
chrisgrun   RIght now there is discussion of starting another exercise study in SBMA in europe.
EdM   How do we join?
chrisgrun   They would use our results when designing their study.
EdM   ;-)
chrisgrun   We can let you know when they have started. it should be within a year.
david   Ed I also feel worse if I do not keep to my normal routine.  I just need to set aside the time and do it.
chrisgrun   THere was no specific cardiac component to the exercises.
chrisgrun   It is good to continue doing the exercises that you are doing at home, especially if you are keeping a diary and feel good overall with your progress.
MikeG   but cardiac should be good for our heart and lungs, right?
chrisgrun   we also collected many other outcome measures of quality of life, depression, fatigue and are studying how these measurements changed over the 12 weeks.
chrisgrun   Yes, cardiac is good for the cardiovascular system, immune system, and the nervous system.
Bruce   Muscle memory plays a significant role in my program.  Once the muscles are comfortable with the routine, I find them easy to do.  I can then add more reps or other routines.
EdM   Mike,   I think so!  ... as does my physician.
mattsenac   Yes Mike this is wworking for me as well
chrisgrun   it is important not to push yourself too far with the cardiac given the muscle limitations. But this is something that you can adjust.
cdharris   I slipped on ice in December and cracked 3 ribs and I have been taking off from exercise.  However, I am still very active around my house and farm and plan to resume an exercise program soon.
mattsenac   Chris was swimming part of the study Sorry if this was addressed as I signed in a bit late
chrisgrun   I am sorry to hear about the Mr. Harris. Breaking ribs is something that I have seen in several KD patients.
chrisgrun   Hi Matt, no swimming was not a part of the study. The subjects either did stretching or functional exercises (heel rises, push ups, lunges)..
bcpaul   In the preamble to the trial, it stated that 'we do not know if exercise is beneficial or harmful for KDers. From an employers perspective in determining disability (and liability) where do we stand now?
chrisgrun   The fatigue was a big problem for many patients in the study.
chrisgrun   We would say that exercise is safe, and is not found to be harmful. However, we did not find it to be beneficial.
Bruce   I feel the key to any exercise program is knowing your limitations and then planning a program that doesn't push your muscles or capabilities too far.
Hugo Rodriguez Breaking ribs could be more related to the many times we fall down due to trips or lacking of Calcium?
Ron M   Chris - how was fatigue a problem?
MikeG   I would assume that the fatique was on the part of the functional group, right?
chrisgrun   It is possible that a different study might find a different outcome. One thing that could be different in the future is the exercise stimulus itself- perhaps a different length of study and different duration of exercises.
carofer   Is there any way to test neuron health and was this done in the test? Could the neurons increase/improve without muscle improvement?
chrisgrun   The fatigue was something we are finding to be more of a problem in those patients who are stronger (stronger on the AMAT and the quantitative muscle testing.
BobK   I found pretty good benefit for myself with the clinical trial exercises with NIH during the 12 weeks, and then modified a little earlier the next year adding a few similar exercises in discussion with a local physiotherapist, so doing 14-15 exercises (3/week) & 4 reps each exercise...benefit last couple years has been little better balance/ ability to respond on uneven surfaces, less falling & able to get up/down from chairs a little better. Overall strength seems to be about same as couple years ago, so this is probably good on balance ...currently on week 143 I believe of 3/week routine..it seems to be a helpful routine & doesn't take too long after long days at work...
Bruce   Chris, did the time of day they exercised make a difference to the patients?
chrisgrun   We found that there was no significant change in the fatigue levels over the 12 weeks. However, the fatigue may help to predict who is more likely to be stronger and weaker.We are looking to see how it effects the response to exercise.
chrisgrun   The neuron health is somthing that we did not directly assess for. We looked at dowstream effects on function and strength.
chrisgrun   The time of day that the exercises were done does not seem to effect the outcome.
EdM   Chris, could you explain how you measured fatigue? ... briefly
chrisgrun   Yes, the fatigue was measured with two different scales- one was the vitality index on the SF-36 survey and the other was a questionnaire called the fatigue symptom inventory.
chrisgrun   Both are subjective measurements of fatigue.
chrisgrun   we also found that approximately 24% of patients had a BDI (beck depression inventory score) over 14. THis could mean that they are more depressed.
EdM   So, stronger individuals reported more fatigue after exercising?
chrisgrun   we saw that the BDI score dropped by about 17% in the stretching group (but this was not statistically significant).
chrisgrun   The stronger individuals are reporting more fatigue, yes.
frabayrui   buenas tardes desde España
bcpaul   All of my falls/ incidents were related to reflex and fatigue.  For the past two months I have been on a theraputic dose of a reflex enhancer and have been doing extremely well overall but have been waiting for the results of the exercise trial before attempting to go back to worlk. Is there any evidence of any improved muscle strength for people with KD
frabayrui   Good morning
EdM   What would be a typcial BDI rate in a group of non KD patients?
chrisgrun   it seems that with more muscle present, there is a greater sense that the muscles are not performing how they should be.
david   My experience from the exercise trial was primarily learning that I can safely add new actions/routines.  Based on that knowledge working with my Physical therapist last year I added some moves to address shoulders and hip strength and this year have added moves to address ankle strength.  In both cases my therapist has reported positive results.
Bruce   Could the increased fatigue by the stronger group mean they were pushing too hard?
1gfurman   When they exercised did their muscle pain increase?
mattsenac   David I have found the same to be true with me
chrisgrun   Yes Paul, we did not find a specific way that the muscle strength could be improved, but we found that nothing actually made the muscles worse.
carofer   As one of the "stretchers" in the trial, it seemed like strength was not improved, but overall sensitivity and blood flow seemed to improve -- in other words, my body felt a bit more alive.
chrisgrun   Ed, the BDI in non KD patients would be slightly lower, however we do not have great American control data. The best data is from europe. it shows that the BDI is somewhat higher in the KD subjects.
chrisgrun   Bruce, the fatigue didn't seem to change over the 12 weeks. No increase in fatigue- but the KD patients overall seem to exerperience more fatigue than individuals without KD.
Gary_KC   carofer, You have a good point.Yes, I agree with you. :-)
david   Also this year I was experiencing some additional swallowing issues, so based other muscle reactions to more movements I asked to see a speech therapist to determine if my current routine was having a negative effect or if I could learn additional moves to gain improvement.  In short I recently added some new throat exercises and again have seen some improvement
chrisgrun   We have not looked at the adverse event of muscle pain yet. it did not seem to be higher in either group.
mattsenac   Recovery time after exercise is longer up to 2 days for me
Ron M   Chris - just to be clear. We are talking about general fatigue and not muscle fatigue?
chrisgrun   Yes, Carofer, it is possible that this is the case. Interestingly, we found that there was a statistically significant increase in  the hand grip strength in the strething group over the 12 weeks.
chrisgrun   Yes, Ron.. this is general fatigue.
bcpaul   I did not notice a nutrition component to the trial, given the relationship between nutrition and sarcopenia, wouldn't it also affect KD?
Ron M   Interesting. I suffer from tremedous fatigue. Could never understand it. Thanks
chrisgrun   Yes, this is very interesting Paul. Diet may play a role in this. We collected the Block diet food questionnaires.
chrisgrun   it looks like there are differences in fatigue depending on the diet-- we will have more information on this.
chrisgrun   we assessed diet just at the beginning of the study and have rough assessments of total fat, protein, calories, vitamins consumed.
Stewart   Fatigue is my biggest problem, I need 8-9 hours’ sleep to recharge after being active, otherwise my energy levels to the point of exhaustion, my new normal is feeling tired.
Ron M   Stewart - I am the same way
chrisgrun   Sleep is important Stewart- it is good to get as much as you need. Do you have snoring or obstructive sleep apnea?
bcpaul   My theraputic (50mg/day) dose of Modafinil has eliminated fatigue as a daily concern
BobK   I joined late and might have missed earlier discussion...was there anticipated timing for publishing this year? Or looking at some modification to study and publishing later?
chrisgrun   Has the modafinil helped you to sleep better Paul?
chrisgrun   Yes, Bob. we will publish this year. Perhaps two separate reports on the baseline characteristics (fatigue, IGF1, depression/aggression ) and the effect of the exercise separately.
Bruce   frabayrui: my private chat isn't working.  Sorry
frabayrui   OK
chrisgrun   I have seen a number of KD patients have sleep apnea and it can be a big problem.
frabayrui   I have apnea
bcpaul   As an ex shift worker, I have never slept well. I have not noticed an improvement with the Modafinil for sleep except to say that I am much more content with the things I get done in a day and so head to bed more ready to sleep
chrisgrun   The masks for the CPAP can be uncomfortable- and it might take time to find the right one.
frabayrui   VPAP ALSO
frabayrui   I work sleep with vpap
chrisgrun   From an exercise standpoint, it would be good to still discuss any potential exercises with your primary care doctor or neurologist before you start.
chrisgrun   I think that it is helpful to know that the patients did not get any worse with the exercises. It is possible that different types of exercises may show a benefit in the future.
bcpaul   My sleep has improved strangly enough by increasing my acid intake through the day (at least one dill pickle or saurcrout for lunch). I no longer need ant acids at night
EdM   I do know that I still have the ability to respond favorably to exercise by training
chrisgrun   Overall the accelerometer measurements that we took were not very helpful- they did not seem to detect the exercises- and did not change depending on strength or other measurements of funciton.
Bruce   Chris, I found that having a PT evaluate your specific needs and design a program around that has helped me significantly.
chrisgrun   Increasing acid.. do you know why this would be helpful Paul?
frabayrui   is possible that the TREHALOSE help?
chrisgrun   Yes Bruce. I would agree with this. It is great to work with a PT because they know what you are capable of and can design the exercises specifically for you.
BobK   I have found continuing with modified CT exercises (with local PT) beneficial, mostly a litte better balance, so less falls. Having a day between, seems to be good for muscle rebound to exercise again the subsequent.
bcpaul   My speech therapist suggested it, It was something to do with improving digestion and nutrient absorption
chrisgrun   Trehalose is something that a few research groups will be studying, including ours.
chrisgrun   THat is interesting Paul- I am glad that it is helping you.
frabayrui   ok thanks from Seville, Sapin
frabayrui   Spain
chrisgrun   Right now the trehalose still needs to be tested in SBMA animal models.
frabayrui   very insteresting
chrisgrun   I believe that there will be another exercise study in the future that should add to our knowledge, and allow us to make a better, more specific recommendation
chrisgrun   It is also encouraging that exercise has been shown to be useful in many other neuromuscular diseases.
frabayrui   then it is good exercise Cris?
chrisgrun   We did not see that CAG repeat size or disease duration had any effect on predicting benefit with the exercises. So it does not seem that one should or should not exercise depending on how long you have had KD.
bcpaul   It would be good to know why the Modafinil is making such a dramatic impact on my fatigue, had I been prescribed it sooner, I would not have been bad enough to have needed the test to find I have kd
BobK   Sounds like if there's consideration for a modified exercise study, that this current study showed some promise. My local neurologist (in Toronto) works mostly with ALS patients and was most interested in hearing on the results of the KD study with NIH.
chrisgrun   That is interesting Paul- did you find that the modafinil changed your sleep habits at all?
chrisgrun   Yes, Bob. THere is also a study of exercise in ALS patient that is underway at John Hopkins and that should be finished soon.
carofer   One of the big changes we all look forward to is getting into a wheelchair. It seems like this decision should be delayed as long as possible so that the additional upright exercise that comes with walking keeps one's strength up.  Should our exercise change tremendously if we start to use a wheelchair and/or a walker?
bcpaul   Stopped me from falling asleep during the day (especially at earlier doses) but has not prevented me from napping when I choose to.
bcpaul   I have also lost fifteen pounds since the trial
chrisgrun   Carofer, I think that it is safe to continue exercising as long as you feel that it is not making you any worse. Yes, the exercises will need to be adapted depending on mobility, but I do not think that it should stop you. You will just need to change what you are doing.
chrisgrun   Yes, Paul. the sleep is very important - this could have been one of the main reasons you were experiencing fatigue.
chrisgrun   we hope that the results of the study will be useful in designing future studies and giving KD patients an idea of what they can expect on "average" if they do these exercises.
chrisgrun   The time interval of 12 weeks is also important- we do not know how the exercises will effect patients if they are continued past this time point.
Bruce   Chriws, we appreciate you attending the chat to explain the results of the trial.  Your involvement is appreciated.
chrisgrun   I hope that we will be able to incorporate exercise into other clinical studies in the future.
sfurman   Has anyone else signed up for the Norvaris study or heard anything about the current status of that study?
david   Chris during the study there was a comment about allowing the participants to learn the exercise they did not use if they were helpful.  I guess from your comments on the results that may not happen now
Hugo Rodriguez Thanks a lot for sharing your oppinions
MikeG   we will definitely include a block in the upcoming KDA survey on exercise.  It is something that we are all interested in.
cdharris   I would like to participate in the Norvatis study, but can't get any reply to my calls and emails to either Novartis or Angela.
chrisgrun   Yes, since neither one was helpful, we probably will not specifically bring back patients to learn the other exercises.
chrisgrun   Hi Harris. the novartis study is underway.
Stewart   I have noticed one leg (my dominate side) to be quite a lot stronger than the other.
chrisgrun   We currently have two subjects who are undergoing evaluation as part of the study. then we will need to evaluate the safety data before continuing.
carofer   Chris, I for one deeply appreciate that you have dedicated your practice to KD. I wonder if NIH has adequate funding for KD studies, and has the funding become lower due to politics?
bcpaul   I have been doing some exercises to target my iliopas which has helped with mobility and lower back pain, but not the neuropathy. No longer need the forearm crutches
chrisgrun   That is interesting Stewart- overall the baseline Brain paper found the opposite- the dominant side tends to be weaker.
MikeG   that's the opposite from me, Stewart.  Of ccourse the dominate side the one I broke my hip on... :(
chrisgrun   Funding is more difficult now- it has dropped by 10% over the past two years. It makes it more difficult for new research to start.
MikeG   This was a GREAT chat, Chris - thanks for your time this morning!
cdharris   I called and emailed when the Novartis study was first announced but never heard back.  I would be glad to participate in the second phase.
chrisgrun   OK. Mr. Harris. We are not recruiting right now, but we will be in contact with you. We appreciate all of your interest.
mattsenac   Thank you Chris for your time, work, and dedication to KD
EdM   thanks, Chris!
cdharris   Thanks very much.
chrisgrun   I appreciate everything that you have all done for the research effort.
chrisgrun   Thank you for your interest in the research.
david   Thanks for the update Chris
chrisgrun   Have a great weekend. thank you for having me on the chat.
Hugo Rodriguez Thanks a lot to everyone, specially to Chris for participating in the chat. Have an excelent day.
chrisgrun   please e-mail if you have any other questions..  This email address is being protected from spambots. You need JavaScript enabled to view it.
BobK   Thanks Dr. G. It's wonderful work that you and all the KD research team is doing at NIH!
frabayrui   thanks from Spain
Gary_KC   Chris, thank you so much your time to share the result with us. Have a nice weekend.
Stewart   Thanks, a little disappointing but very interesting,
bcpaul   Great there is more to build further reseach on, sad there was no definitive result.