STEVEN OPPEN

For the last 3-4 months, my handwriting has become illegible. When I take notes, I find that,somewhere along the way. my mind loses focus and “wanders” both physically (my eyes literslly begin to wander!) and mentally. It has become a serious problem that I need to fix. Could I ask all of you to send me the names of programs that I could consider?…[Read more]

I am starting to use transportation services in some cases. I have to travel to Gainesville once every month for the next 5 months or so (I’m in Sarasota,a 2.5 hour trip one way). When I decided to get DBS if I passed muster, I knew that I was committed to getting to the U. of Florida, because it is a Center of Excellence . I am a strong believer…[Read more]

This reply may not nake sense to you – it may sound that it is politically driven, But it is not. The reason for the idea of using screening techniques to determine who should be a candidate qnd who should not are all dirven by the desire to have a very high % of success in the results. For example, not many PD patients over 80 years old qualify.…[Read more]

Are you kidding me? I haven’t had an uninterrupted night of sleep since my last passionate night of love making, hmmm…was that in the 90’s or 80’s …can’t remember. Seriously, my anxiety history, combined with long term usage of zolpidem (not proud of this),decreasing bladder capacity, etc,etc has caused me to become serious about making…[Read more]

diagnosed in 2013, having just received the news in 2011 that my wife had pancreatic cancer. A double whammy – my love of 48 years lost her battle in 2017. I was determined to fight the good fight, albeit as a patient and caregiver rolled into one. Met my “second love” in 2018, we enjoyed each other’s company for 3 years before she decided that…[Read more]

I recommend “Ending Parkinson’s Disease” by Dorsey, Sherer, Okun and Bloem.

I would very, very much like to hear from PD’ers who have had DBS (both successes and failures). At the current time, I believe that DBS is the only therapy that has the potential of going beyond drug therapy. If there are participants in this forum who have had DBS and would be willing to share their experience, I would love to hear about your…[Read more]

What is Restore Gold ?

I’ve been involved with two different boxing programs here in Sarasota, one an “independent” program (not having affiliation with RSB) and one led by a certified RSB instructor. Both programs are excellent. The key to success is really in the hands of the patient/caregiver (there are some participants who require assistance to stand, but damned if…[Read more]

Hi, Steve.

Please allow me to add my 2 centavos. As others have mentioned, I think someone from your family has to work with your mother’s neurologist to find the best PD medicine and the correct dosage of this medicine. It is difficult for some of your compatriots in the US to translate their experiences to your mother’s location. One or…[Read more]

When I saw that Mary Beth was asking readers to provide some input for April’s Parkinson’s Awareness program, I knew that I wanted to take a somewhat different approach. I’ll use my allotted space to make you aware of a fabulous organization – the NeuroChallenge Foundation for Parkinson’s (NCF) https://www.parkinsonsneurochallenge.org/

NCF is lo…[Read more]

Dear Mary Beth,

I would like to take a somewhat different tack in my response, but it’s going to take me some time to put it together. It’s likely that I won’t have it ready until next weekend. Is that OK?

Steve O.

Dear Mary Beth,

If you still need people, I would be happy to participate. I’m an active 73 year old PD patient, fighting to stay as well as I possibly can. Diagnosed in 2013, I have had several experiences during the last 6+ years that have made me re-assess what I want to do with the rest of my life. Lost my wife to bile duct cancer in 2017…[Read more]

My neurologist is anxious for me to try Neupro, because my chief complaint is that I am deeply affected, both physically and mentally, when I enter those terrible “off”  periods when my Rytary does not work as well as it should. Neupro, with its mechanism for continuous dose dispensing, should in theory help me avoid those “off” episodes. But ,…[Read more]

I have lost about 20-30 pounds off of a 180 lb. frame (only 5′ 8″). Actually, I’m very happy about the weight loss – I’m staying at the 150 lb. level, which is much healthier for me. I had some concern that, as I came down in weight, it seemed that it would never stop, but stop it did. When I asked my neurologist his thoughts on why I was losing…[Read more]

Hi, all. This is Steve in Sarasota, FL, sending my first contribution to this on line forum. Diagnosed in 2013 and, like all of you, fighting the good fight against this horrible affliction. I haven’t seen another drug mentioned, so I’ll throw it into the mix. It’s Rytary, a time-release version of Sinemet, available in 4-5 strengths. The bad news…[Read more]