March 10, 2016 presentation by Dr Jankovic on Orthostatic Tremor in Houston Texas

Moderator: admin

By MikeS
#5148
Hi Everyone
I have waited a couple of weeks before I posted as I needed time to consider my thoughts and how I try and convey them.
Firstly I must thank Pat Jeff Beth Gloria and everyone else that was involved .
I really do appreciate all the tremendous hard work that goes into the organising such an event.
It is always fantastic to meet all my fellow 'teddy bear legs' sufferers. Listening to all the stories and all the trials and tribulations we go through is the best medciine for me .I met some old friends and also made some new ones (Ihope) who were willing to listen to my stories even laugh at some of my jokes.
I try and keep a positive outlook on OT and will never let it beat me .
OK so here it comes I dont know if I will attend anymore meetings that are centered around the Dr .
Let me explain as much as Im pleased he came to be honest I was very dissapointed with the 1 hour allocation of time and the fact that 45 min was given to all the neuroligical disorders I dont have.When I went to Omaha I felt that we were being some sort of help .At the first meeting in MN at least the Dr came in and sat at a round table and wanted to know everything we could offer .
To have a few written questions answered in a dismisal kind of way didnt work for me .
When do any of these neuroligists have 20/30 OT suffers in front of them for at least 3 days ?That have self funded the entire trip .
Ok so what would I like to happen ?,Well we have raised money for Nord and Omaha I think the Omaha money we will see some answers but as far as Nord is concerned Im not sure its a good investment for us I would like to use the money (doubt we can get it back) plus any more we can raise to pay some Drs or a Dr to do something and Im not sure what so we can design our own meeting .
I would like some feedback please.
Please do not think Im being ungrateful but I must be honest and say what I feel I do not want to offend anyone I as I said I am trully thankfull for everything that was done .
It is a wasted opportunity in my humble opinion.

Keep Smiling
Mike
:)
By admin
#5149
Hi Mike

Hope the rest of your trip went well. I’m never shy to give my opinion when asked :) so here goes my feedback on your thoughts on the OT fund. Hopefully we will get other feedback too.

My feeling is that both research funds, the UNMC and NORD are good. The problem is that the number of people effected by OT is limited and this naturally limits the amount of money that can be directed towards research. The amazing thing is what this group has achieved with the resources that it does have. There are significantly larger groups that have raised 20x the amount and has yet to fund a single research proposal, with most of their funds being used for administrative costs, fundraising costs and websites. One of the main reasons for the success of funding research is that OT donations go directly to the funds.

The way the NORD fund works is that they create a threshold of $33,500 and when that amount is reached they send out a request for proposal for a research project specific to OT. There are administrative costs and also the NORD Medical Advisory Committee is involved in reviewing the proposals. NORD does use $3,500 of the fund for these costs. That is a fixed amount for grants between $30,000 to $50,000. In the world of charities having this high of a percentage of the money being used for the purpose it very good. I’m glad that NORD offers this service. I can’t see how taking on the accounting, legal and medical roles of administering a research fund would be efficient for this group.

The UNMC has also been great, and we are looking forward to hearing about the results of the work that they have done. When the question was asked about the NORD research grant while at the OT meeting in Omaha, he suggested that it was important because the NORD grants are typically directed towards treatments and therapeutic research. The UNMC was dealing with more core questions of how and why, which can also lead toward treatments and therapies. It seems that we have stumbled upon a very good “team” of funds.

The OT community doesn’t have deep pockets or a large base to draw upon. But even so, these funds have made progress and funded real research. Having a small group such as this achieve this accomplishment is almost as rare as OT. When new donation thresholds are reached hopefully there will be more research, and possibly someday a cure.

All the best,
#5150
Hello Mike and all,
I have to say that I and others I spoke to after the doctor's presentation agree that in future, we might not worry about having a doctor give a presentation. We are of course grateful to Maggie and Pat for making his visit possible but the reality is that they really don't have anything new to tell us.

I was involved in the initial talks about setting up this meeting and we felt that by having a doctor give a presentation, it may encourage OT people who haven't come previously to a meeting, attend.

Once they come to one meeting, they quickly realize that it is the meeting others and sharing issues that are common to us in dealing with this that is the important thing. The support group we have created by having these meetings is very valuable.

Unless a doctor is doing research and needs us to participate then meeting with a doctor is really not a focus I would say in the future when planning these meetings. We did talk about other people we might consider having give a presentation and that included - a pharmacist, a physiotherapist and some OT people are looking into this with regards to the next meeting.

Regarding our participation with NORD - I would not encourage severing any ties with them. They provide the administration that our small group could not realistically handle. Plus, they did give us a $10,000. grant last year.

Maybe this is something you can look into Mike - you could check with NORD to see if they would accept a suggestion on future research - ie. the oxygen therapy that you discussed. You never know until you ask.

Peggy
By Betty
#5158
Hello Mike and All.....

First, Mike, I wanted to thank you for the excellent videos you posted on the website. You said things most of us have forgotten or just take as 'part of my life now'. For people who don't/can't understand what it's like to have OT, you explained it very well. Thank you for that!

Now as to our donations to UNMC and NORD; I have donated to both, as have most, and feel we get more feedback from UNMC through Dr. Torres than from NORD ~ but both are trying to find where in the brain OT originates. It is, and will be, a long process. It may not happen in my lifetime, but hopefully it will happen for others. We must continue to be hopeful and continue to fund research.

Wish we could have made it to the Houston meeting, but this time it wasn't possible; maybe next time.

Betty
#5179
It has been great reading all of the responses from everyone regarding our meeting in Houston. I was encouraged to see that we had so many new people attend for the first time. We are reaching out to others and that is one of our goals.
It was interesting to see that Dr. Jankovic showed that there is a deficiency of Dopamine in the brain scan of OT patients, yet Dopamine replacement therapy doesn't seem to help. It is one of the first drugs that I was prescribed. This is a puzzling disorder, and there do not seem to be any 'magic solutions' at this time. I am appreciative of all of the Doctors, and research centers that are studying this. It is so easy to be frustrated with the lack of knowledge about this disorder, but I try to remind myself how grateful I am that I don't have one of the more dreadful neurological diseases that are out there. Our little group is doing the best we can to keep up the momentum, gather information, spread awareness, and advise one another.
Mike...... I loved your video and song. So cool that you were able to make that and share it with us! You are one creative guy! Anyone who sees your videos will have an excellent idea how we feel! It was great to see you in Houston.
Thank you Pat for the thorough report on all of the conference topics. I know those who were not able to attend will enjoy reading and learning from your notes. The hotel worked out so well for our group. The meeting space was perfect and the food was quite good. Thank you for your efforts and for leading the discussions so professionally. These meetings take a great deal of time and work and we appreciate you for that.
As always, I am so thankful for Gloria and her courage to start all of this. It is amazing, really. I am proud of the OT plaque that was given to me. It sits on top of my desk in the study, and reminds me of friends that share a special bond because of our illness. Jeff and Beth are the best! I know Jeff spends hours and hours on this website, and I am so appreciative of the donation of his time for our cause.
It was wonderful to see all of you in Houston. Wishing you the best, Maggie Neal
#5234
It was so enjoyable to read all the responses to our OT Meeting. Thanks to everyone who made this conference possible.

Dr. Ostem of UCSF's (San Francisco) Movement Disorder Clinic was so pleased that I attended. As a result, I have been encouraged to increase my Gabapentin dose & gradually reduce my other meds. Since taking Gabapentin I have noticed the absence of "freezing" up if I overstayed my limit on standing...what a relief !

Dr. Ostem recently was part of a team that published an article on deep brain stimulation in OT. It can be found @ pubmed.org in the MediLexicon Search under Thalamic DBS in OT. The full text is Bilateral Ventral Intermediate Nucleus Thalamic DBS in OT by Coleman, Starr, Katz, Glass, Volz, Khandhar & Ostrem.

It was such a pleasure to meet all of you who truly understand living with OT.
Marianne M. Poppas

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