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Jared Koch posted a topic in Newly DiagnosedHello, first post for me as I recently have overcome the "denial" phase and am "coming out" about my diagnosis I received as a 36 year old man, almost 3 years ago. My first symptoms showed up as a small tremor in my left index finger and an overwhelming feeling of anxiety. I chalked it up to the affects from an unwanted marital separation and stresses of losing my wife and the ensuing divorce litigation and custody battle of our 1 year old daughter. Those things have since stabilized, but my PD has not. The small tremor has now taken over my left arm and shows itself on my right side occasionally as well. I move noticeably slower and have trouble with little things like typing, tying my shoes, eating, etc. I initially visited 2 doctors in my hometown, Springfield, IL. Since I was in denial, I felt almost offended that they both immediately wanted to put me on medication, as though they were driven by the pharmaceutical companies. I reluctantly started Azilect, only in hopes that it would hide my tremors. After about 3 months I didn't feel much difference and decided to stop it and find another physician. I found a God-sent Angel of a doctor, Dr Dyveke Pratt, in Peoria, IL. who did not push medication on me and instead prescribed cardio exercise, healthy diet, and less stressors in life. As symptoms progressed, we did decide to try Mirapex, to which I did not see relief. Admittedly, I am not a good prescription pill taker and probably did not give it a true test. Upon that realization, Dr. Pratt and I decided to once again eliminate medication. She prescribed me with 6 months of daily physical exercise, getting my heart rate above 130bpm for 30 minutes, every day. It's been 3 months and I haven't missed a day. I'm in great physical shape, but my tremors have gotten worse, and symptoms are progressing. Now I find out that Dr. Pratt is leaving the INI practice and I have no inclination of where she is going. I feel that medication is in my near future but am scared to death of it. I do not want to start Carbidopa/Levodopa, not yet. If that's the "big gun", I want to wait until I can't live without it. So, I'm in search of a physician in or near Central Illinois, and am open to any thoughts, advice, experiences, or questions from anyone listening... Thank you
Hello, For people that have difficulty communicating, this topic may be of interest. Background Unfortunately my mother got a lot of issues communicating because of her Parkinson’s disease. Her motor is affected such that she can hardly control her arms and fingers. On top of that the neurological disorder affects her speaking abilities as well so she is very hard to hear and understand. Through this combination she is living more or less in isolation. We couldn’t find any suitable communication tools (except expensive picture based tooling). Because of this I developed an text-based iPad/iPhone application with which she can still create, write and send small messages /words given her minimal capabilities. As this app is very useful to helping my mother, I imagine it could also be very useful to help others too. Thats why I uploaded the ‘app’ in the (Apple) appstore and it can be downloaded and used for free. The app is called ‘ISay’ and can be found easiest using the same name in the appstore. ISay ‘ISay’ comes with a special designed keyboard to be used by people with limited motor control (e.g. trembling / slow moving). Where a regular keyboard produces multiple letters in case of trembling, or no letter in case of too slow removal, this application will execute a button once (or produce just 1 letter). The application has been kept very simple and self explanatory. It uses a 9-button A-Z, 0-9 keyboard (instead of regular QWERTY). Besides this keyboard also a 3-button keyboard is made available for those people have even more serious motor impact. Every message is automatically archived and can be easily retrieved for later (re-)use. The archive can be easily cleaned to remove obsolete messages. All messages, also from archive, can be sent using via ISay (per SMS/iMessage). As it is an app, it is easy to carry this aid with you, simply by bringing your iPad or iPhone. I hope this application can help you make life a little bit better, just like it still helps my mother! Kind regards, Ernst
I am a 24 year old and a college student. My father was diagnosed with PD in January of this year. I'm able to give plenty of support to my father while I'm home for the summer but I'm worried what to do when I go back to school. My father is not married and immediate family does not live close. My Question: What support (mentally, physically) can I and my family give to my father with all of us being far away and only able to get to him only so often.
Okay I'm requesting support from all of you on this and here is why: It may be soft at times, but We have a voice, let us use it! I believe if enough of you go to YouTube, hit 'like' and comment on the following that we can get the attention of the casting team, who may cast me, or some other PWP. I am 34 years old, Dxd with YOPD in Oct 2013, I am married (10yrs), have 3 healthy happy sons, & one more in heaven, I work from home full time, and these are just the basic facts... For a long time it has been a dream or unrealistic goal of mine to get onto CBS Survivor (reality TV show). For a while I wanted to do this to show the world that life does go on for grieving parents. This was before Dx with PD. It felt like I would need to start trying before I got too old, and that time was my biggest opposition. Now since Dx I now also think it would be cool to let the world see another side of PD (very young and very early in the disease). Mostly now I know I want to do this for myself as an once in a lifetime adventure, but since starting meds I now know that it wasn't just getting old, but getting sicker. Therefore pressures of time seem all the more oppressive, as none of us PWP know how long we'll be able to function as well as we need to. I recently made a new audition video for Survivor Casting that includes the fact that I have PD, and I have submitted it to them. Sending in a video to them is the equivalent of tossing a penny into a fountain and making a wish. With time running against me I am more determined to try every resource I have to get their attention, and I would like to appeal my fellow PWP to show exactly how many of us there are and that we support each other. I'm not asking for any money or anyone to go public, but simply go onto YouTube, watch my 3 minute video, give it a thumbs up, and if compelled; make a comment about how it would be nice to see a PWP on Survivor. Link to video https://www.youtube.com/watch?v=QP7rov-mcbE To 'like' it on YouTube you have to go to the actual website (click on 'youtube' logo in the bottom right corner to go there) and be a registered user. If you are not already registered I am not asking you to do so on my behalf, but YouTube is free to use and register. Please don't think I am spamming the website as a few days ago I posted this within another topic, but now it should have its own string on here to make sure more people see it. If you have any feedback I'm open to it, be it about the video or my request to get your support. My goal is not to take advantage of others with the same affliction and I do not wish to bring any additional stress as I personally know the damage that wields. Thank You Richard aka Metfan31 aka Captain Irish...