Scott Milstein
Forum Replies Created
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I am a patient. Our group went to virtual and it’s been a help. I think you have to be motivated. It’s not as good as in person. I’d have participants reach out.
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I’ve been on it for about 4 months. I read that red wine and draft beer were the culprits. However my Neuro and my Pt( who incidentally also has PD)say it’s okto have a glass of Red wine or draft beer. Very confusing
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I took it in the fall is 2019 after I was diagnosed. It’s basically about reprogramming your brain. The idea is that by taking large movements the brain will try to stretch the small movements that come with PD so they’ll be bigger( hard to explain).
It’s worth it. It’s not a miracle of course but it will help as long as you practice after the month is over.
Good luck. Let us know what you think . -
I just was diagnosed in September. But I’m on Rasagline, the generic Azilect.
I feel exactly the way you do. Everything at this point is the same. My PT takes it and says the same thing. It will be interesting for all of us as time moves on. I’m glad it’s at least maintaining the status quo.
Keep us up to date. I’ll do the same
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I went on vacation to Florida for 10 days recently. It was my first time since diagnosis. We also went on a short cruise. I was a little on edge since I was going to have to negotiate my way around a crowded boat. It worked out fine though I did fall once. It would be nice to get away from PD on vacation but it was relaxing.
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I got involved in RSB a few weeks after diagnosis in September. It’s one of the main reasons I have been able to keep my mental state at somewhat of an easy keel. The socialization is as important as the workout.
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I live in the Philadelphia ,PA area. I was diagnosed in September of this year.
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I find myself having trouble getting in the car. I’m not quite as bad as the original poster but it takes a bit of work to get in sometimes . Getting out not too bad. I have to take my time and not get frustrated.
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Lou,
Great post. I was diagnosed in September and I haven’t had that angry stage. I think that is because of two things. First, I finally had an answer as to why things were happening. Second, I jumped into therapy and exercise immediately.
I may get angry yet but at least for now I’ve been ok.
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Jean, thanks for the articles. They are on my reading list for the weekend.
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I’m going for luck of the draw.
I can’t think of anything that caused it. I never took any pills except Lipitor. Never was into drugs. Never smoked.I think I missed a handful of days for work since I started working at 16, 47 years ago. Before this I was the guy who was never sick a day in his life .
The only thing I do in excess is eat ice cream on the weekends. It’s a treat. I prefer to think there is no link between PD and ice cream lol.( if there is don’t tell me).
Some things are just random. I’m just gonna keep on keepin on!
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Mary Beth, I too do Rock Steady. I never thought I’d get into boxing but I like it! I just keep moving.
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I just joined. I was diagnosed September 13, though looking back the symptoms were there for a few years.
I joined because I want to reach out and learn from people in the PD community. I am a newbie to this and feel I can learn so much from a forum like this.Basically I want to reach out and help and also be helped. I want to make some friends , learn and hopefully, and most importantly, share a few laughs along the way.
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Hi Mary Beth,
I thought I would feel more relief than I did feel. This might be because I’m more concerned about my parents and in laws. I still have a few friends to tell. I think this is all part of the acceptance phase, which I think takes a while. I’m out there exercising and my local fitness place has a PD specific program. I think in my mind so far that’s more important than the process of letting folks know.
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Hi Ally, I don’t mind answering at all. There are a few people who do know. I’ve been telling them as I see them. Since I work for my Brother in law, him and his wife know. I have told some of our closest friends. ( interestingly they all were fighting back tears and I’m telling them have faith because I’m doing everything to fight it).
It’s not really that I’m trying to be private. My main concern is that I have 87 year old parents and 85 year old in laws. They , of course have their own issues. I don’t want to give them more to handle. I do limp from PD but they buy it being my back because I’ve has a few back issues. The day may come that I have to tell them but for now I feel I need to do that even though it’s hard. ( my PT, who also has PD never told his mom. I know someone who told his parents he was going to a convention when he had heart surgery). I’ve told those who know please never put it on Facebook because even in their 80’s my parents and in laws look at that. -
I haven’t told many people so I just usually say I’m doing great. If they ask about the limp I just usually just say it’s my back. If it’s someone I told I may go a little bit deeper but generally I keep it simple.
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I think so. They want me to do my job and do what I need to do to try to stay healthy. I worry a bit because I drive a lot for the job but I’m taking one day at a time.
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I was diagnosed in September but realistically had the symptoms for two years. I told the COO and the owner mainly due to the fact the owner is a relative, though not my direct supervisor. I’m not sure that if that wasn’t the case I would have told them. They have been great to me. My supervisors mother has MS so he has a frame of reference.