Are there pathways to advocate for and connect quantified dystonia diagnostic tools from clinics and studies to adaptive sports classification criteria (points given to assess levels a function / deficit in order to promote fairplay across sport involving various physical disability)? Sport-specific criteria for stressful /concentration scenarios and the impact that dystonia and dyskinetic coordination in the spectrum of CP, is largely absent or ill-quantified in my sport. Other physical factors regarding spasticity like assymetric strength, imbalances, or ROM impairment are quantified, but dystonia is measured in largely subjective qualifiers and I would like to know if there are particular researchers with the knowledge to be able to impact future metric iterations of sport classification.
Hello and thank you for your question. Our first thought is to ask if you have dystonia outside of CP or dystonia in CP (DCP). There are differences in terms of the mechanism involved in generating the dystonic movements and they aren't well understood at this time. We are focused on the DCP tools and there definitely may be some that we don't know about. If you have dystonia as a standalone condition and outside of CP you may be able to get information on this subject from the Dystonia Medical Research Foundation. We cross paths but we haven't taken a good inventory of our collective resources. Research in DCP is very much in its early stages. We are still working on pulling together basic education resources for clinicians and community members about dystonia. In fact we are trying to spread the word to clinicians about screening for dystonia in people with CP and spreading the word about where they can locate information to support their patients who have it. At this time you may find clinical tools are the AACPDM website which is the professional academy for cerebral palsy: www.aacpdm.org. AACPDM has an adaptive sports special interest group or SIG. This may be a good group to tap into even if they don't have your answer. You may even be able to connect with a researcher interested in addressing your concern. Here is a link to their page on the AACPDM website: www.aacpdm.org/about-us/committees/adapted-sports-recreation. If you get stuck please PM us at info@cprn.org. Good luck and take care!
I'm dating someone and they've got concerns about my CP getting worse as I get older. Is there anything I can have them ready or watch to help possibly ease their minds and hopefully answer some of their questions.
Hello and thank you for your question. We are in the early stages of understanding dystonia in cerebral palsy and we don't yet have a lifespan view on how dystonia in CP (DCP) may affect people as they age. You may find our UA-cam video featuring community members helpful but it does illustrate the diversity in how dystonia affects individuals. Here is the link if you are interested: ua-cam.com/video/T6pD-Q_sOn8/v-deo.html and it does provide a good overview of where we are in our understanding of (DCP). We also have a DCP Toolkit coming out in the next few days that will provide a detailed overview of dystonia in CP as we currently understand it. Watch our socials for updates. Finally, we are working on a very detailed general information adult resource for people with CP. It may not offer specific information about aging with dystonia but you may find it very helpful. It will outline general health information for aging with CP and have many contributions from adults with CP who offer their experiences and insight. I hope these resources will be helpful to you even if we don't yet have the specific answers you are looking for.
Are there pathways to advocate for and connect quantified dystonia diagnostic tools from clinics and studies to adaptive sports classification criteria (points given to assess levels a function / deficit in order to promote fairplay across sport involving various physical disability)?
Sport-specific criteria for stressful /concentration scenarios and the impact that dystonia and dyskinetic coordination in the spectrum of CP, is largely absent or ill-quantified in my sport. Other physical factors regarding spasticity like assymetric strength, imbalances, or ROM impairment are quantified, but dystonia is measured in largely subjective qualifiers and I would like to know if there are particular researchers with the knowledge to be able to impact future metric iterations of sport classification.
Hello and thank you for your question. Our first thought is to ask if you have dystonia outside of CP or dystonia in CP (DCP). There are differences in terms of the mechanism involved in generating the dystonic movements and they aren't well understood at this time. We are focused on the DCP tools and there definitely may be some that we don't know about. If you have dystonia as a standalone condition and outside of CP you may be able to get information on this subject from the Dystonia Medical Research Foundation. We cross paths but we haven't taken a good inventory of our collective resources.
Research in DCP is very much in its early stages. We are still working on pulling together basic education resources for clinicians and community members about dystonia. In fact we are trying to spread the word to clinicians about screening for dystonia in people with CP and spreading the word about where they can locate information to support their patients who have it. At this time you may find clinical tools are the AACPDM website which is the professional academy for cerebral palsy: www.aacpdm.org. AACPDM has an adaptive sports special interest group or SIG. This may be a good group to tap into even if they don't have your answer. You may even be able to connect with a researcher interested in addressing your concern. Here is a link to their page on the AACPDM website: www.aacpdm.org/about-us/committees/adapted-sports-recreation. If you get stuck please PM us at info@cprn.org. Good luck and take care!
I'm dating someone and they've got concerns about my CP getting worse as I get older. Is there anything I can have them ready or watch to help possibly ease their minds and hopefully answer some of their questions.
Hello and thank you for your question. We are in the early stages of understanding dystonia in cerebral palsy and we don't yet have a lifespan view on how dystonia in CP (DCP) may affect people as they age. You may find our UA-cam video featuring community members helpful but it does illustrate the diversity in how dystonia affects individuals. Here is the link if you are interested: ua-cam.com/video/T6pD-Q_sOn8/v-deo.html and it does provide a good overview of where we are in our understanding of (DCP). We also have a DCP Toolkit coming out in the next few days that will provide a detailed overview of dystonia in CP as we currently understand it. Watch our socials for updates. Finally, we are working on a very detailed general information adult resource for people with CP. It may not offer specific information about aging with dystonia but you may find it very helpful. It will outline general health information for aging with CP and have many contributions from adults with CP who offer their experiences and insight. I hope these resources will be helpful to you even if we don't yet have the specific answers you are looking for.