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Hi, I talked a while ago about the app that we are building right now. This app I build out of personal interest to registrate my own attacks in a good way, and to help other who have these attacks. It will be free to download in the iTunes or Play store. But I need some testers to install the app and try how it goes. It is a very simple app but it would be nice if there are some people that want te check it again so we can start to registrate soon. About the setup of the app: When we have an attack we are unable to startup the computer and edit an excel list, unable to fill-in a report of an app om my mobile. At least, I am un-able to do this. The collected data of almost all apps get stored in a diary. Meaning I have to open and view every day individual to view the data, not handy Our app is made simple. Press the button of headaches and it is registered, press the button if Sumatriptan and it is registered. Press the button of having a massage, taking Vit D or drinking coffee.....and it is registered. Later you can see all your registrations on a timeline instead of an agenda to get a clear view on what you have registered. This will give the option to compare different years, month with each other, compare with other patients and thus giving us the option to help ourselves even better than we do right now. This app is build to help you all and not out of personal gain!
Hi everybody, Nice new forum, well done everybody. I suppose it was a lot of work. I've been to the Netherlands last week to visit the Dutch eHealth-week organised by the Dutch government. There were meetings everywhere around the country and all specialists were very willing to listen to new ideas. Keypoint in the whole development is to reach the patient. Everybody is building ideas from point of view of the specialist or disease, resulting in solutions for heart-rhythm problems, rheumatic, migraine solutions etc. Meaning that if you have different kind of problems or diseases, you'll end up with 2,3 different apps. Not so smart. Other problem is that solutions aren't flexible, they don't give me, as a user, the option to register all I do to feel better, knowing that we do more than visiting doctors and taking medicines. Talking to these specialists and seeing their eyes opening up after showing my idea, did gave me a very good feeling about the app and what it could mean to us. Next step now is to make a presentation and then I'll go back to the Netherlands to present it. Goal is to get funding so I can get a good team to rebuild the app, make a better timeline and a way to share our data. A small history and future As being a clusterhead myself, I've tried many things to try to feel better, to get less attacks or less intensity. Looking around I could find a solution that I could use to register my journey. Knowing that my data could help us solve our problem, I've started to build my own app, helping myself and hopefully other patient like you as well. The Final setup was so easy to use for any kind of disease, that I've decided to publish my idea online for everybody to download. In the future I hope we can setup some kind of medical database were we can store and compare our medical data. Problem is that everybody has a view on our health but we as patient don't. We have our experience and we talk a lot about them. But what if we could have knowledge about our health and all we do to feel better? Compare our data, see why others have less symptoms and others more, compare to migraine patients that are trying a lot of stuff as well or even with people that have other symptoms but some the same. For me it would be already nice If I would have a good solution to get rid off all the tension in neck and shoulders after a few weeks of attacks.Its not a solution but could be part of it. Sharing data, not my kind of thing I know some people do want to share and others don't. The US are not the Netherlands. I can show mu MM use to my doctor, here I heard stories about people being afraid being stopped by police and that they would have "registrations"of MM use on their phone. So we do live in different worlds and we need to find a solution for that. Basic thing in my setup will be that your data is yours. If you don't want to share, you don't and just keep it on your phone. If you want to compare you need to upload your data, but data should still be yours and not used by anyone until you agree to share it. I hope you all like my idea, its just my way of hoping to find a solution and better quality of life. Please argu anything with me about my idea so we can make it better for us as a patient.