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Lorit249 posted a topic in Open ForumI just got my results from 23 and me and I don't have either the LRRK2 or the GBA genes - what does that mean? Am I less likely to pass it on or perhaps not PD? Lori
New to the forum so I'll start with an intro. 30 year old Canadian living in China. Diagnosed a year and a half ago. Symptoms began over three years ago. No medication to date but considering starting to take Amantadine soon. I was doing pretty well until recently when some personal problems started to impact my progression. I realize now, especially living so far away from home and family, that I need contact with other people who might be dealing with PD to help me through this. So I've come here. I have a lot of questions and would appreciate any help I can get. 1. Exercise - As I've seen time and time again, exercise is vitally important to helping manage PD. I exercise regularly and if nothing else it definitely helps my mood. But I do notice that many exercises exacerbate my tremor while I am doing them. Should I discontinue doing those exercises or just fight through them? Should I cut down on weight lifting? Core and balance exercises in particular give me the shakes, though I continue to read of their importance, should I just persevere? 2. Caffeine - I've read a lot about the positive benefits of Caffeine. However, much like my exercise problem, I notice that caffeine also makes me shake more. Again, should I ignore the symptoms and drink coffee or green tea anyway because of their potential long term benefits or should I stop drinking them? 3. Diet - Turmeric. B12. Antioxidants. Q12. Magnesium. Calcium blockers. L-Tyrosine. Vitamin D. It goes on and on The list of recommended supplements is seemingly never ending. I've been advised by my specialist in Canada not to worry about them and just make sure I eat a balanced diet. Plenty of fruits and vegetables. Needless to say, it's all a bit confusing. Anybody have anything more definitive I could take a look at? 4. Retreat - I'm planning at some point in the future of going on a Parkinsons retreat of sorts. Some place where I can go for a few weeks or months and just focus on how best to manage this disease. Ideally somewhere warm with a beach where I can consult with physicians and dietitians and physiotherapists and learn how to ensure that I maintain the highest possible quality of life. Anybody know if such a place exists? 5. Isradapine - Is anybody involved or participating in the ongoing clinical trial on Isradipine? Any results, preliminary though they might be, that can be shared at this time? 6. China - I live and work in China, I've been here for four and a half years, I speak the language and have a good circle of connections here. I'm looking to see how I can help make a difference to people with PD here. I've visited a number of specialists here and have come away feeling that they are not always able to provide the best treatment to their patients. Anybody have any suggestions or know anyways that I could help bridge the divide between here and the west in terms of providing better patient care? 7. Biological determinism - I took part in the 23 and me study and it turns out that I have one of the variants associated with Parkinsons Disease. I have one copy of the N370S variant in the GBA gene. I've been told there is nothing I can really do with this information and that it does not effect how I manage the disease. That said, I'm curious to know what epigenetic factors might influence it, or have influenced it, and what does it say about how I will progress. 8. Online - In addition to this forum, what other forums should I be following for PD related information? That's it for now, thank you for taking the time to read it and if you have any information that you think might be useful please share.