steven-oppen
Forum Replies Created
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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? I think that the speech-to-text options would best fit my needs. Thank you in advance for your assistance. If I can do anything to help you, please let me know. PD has been my “friend” for 13 years, and my answers to your queries are bound to contain my personal biases.
Cheers,
Steve -
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 in the theory that the best neurosurgeons, neurologists and other team members are the ones who do thousands of DBS surgeries, so it was necessary to take on the cost of transportation and other expenses as well. I have had the surgery, and I go to Gainesville tomorrow to get the first adjustment to my equipment settings. I hope that I will begin to feel significantly better as the team zeros in on the best settings for me. I’m told that this could take 5-6 visits, and I am prepared to give the U. of F. team every opportunity to succeed. Thus far, the results are not great, but I will persist.
Back to transportation. I am also using a care giver to take me back and forth to local doctor appts. I still drive (pretty well, I think), so driving mysrlf on occasion is still an option. The difficult part of this activity is getting the commitment of the people yoo are using. Oh, and one other thing. If you use private providers, the question of whether their insurance provides you, the passenger, with any kind of protection is questionable. I doubt that your friend or relative, say, has the proper type and amount of insurance coverage. The conclusion? Ask your insurance agent to do some research and let you know if you can put some kind of rider on your policy that will protect you. Otherwise, it’s buyer beware.
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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 changes so as to move to better sleep. I’ve stopped taking zolpidem( cold turkey)and replaced it with a safer med (trazalom 50 mg.), increased meditation time, decreased intake of fluids post 8 pm and tried to redirect thoughts to a set of positive subjects vs. Items of conflict.
I’ve got a way to go, but, for the first time since I became hooked on Ambien, I’m headed in the right direction. Do I expect to reach the goal of a 100% night of uninterrupted sleep? That is as likely to happen as a return to the night’s of passion, but you can dream, can’t you?
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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 she wanted to go it alone. Now I’m a single patient/caregiver again, and I hate it! I’m experiencing severely reduced on periods – the only Rytary dosage that helps is the 6am eye opener.
I read a great deal about PD, and I was enthused about the future of DBS. Every other product in the current market is a “me too” compound with bad side effects (a bit simplistic, I know, but not too far from the truth). Leaders of the U of Florida program have bet their careers on DBS, and the science is impressive, despite our not understanding why DBS works. I’ve gotten the first lead placed in my skull, and the second one goes in on 3/29. The third surgery is on 5/6, so I will soon know whether enduring the risks of infection and loss of cognitive skills was worth it. I’m betting my life on it.Be well and good luck to all of you.
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I recommend “Ending Parkinson’s Disease” by Dorsey, Sherer, Okun and Bloem.
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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 journey.
Be well.
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What is Restore Gold ?
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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 they didn’t throw their hardest punches at the bag) As long as the facility is safe. both with respect to its general setup and equipment AND they have made special arrangements during the covid crisis to provide proper distancing, special cleaning and disinfection of all surfaces, then I would heartily endorse boxing as an exercise mainstay. I am exhausted at the end of each 1.5 hr. session, but it’s a good exhaustion because I know that I have given my all. I have one shoulder that is not in good shape, so I omit all of the routines that include that shoulder and double up on the good shoulder. This has the instructor’s blessing – it shows you that you can adapt to existing limitations without losing the rush that you get from working out intensively.
Steve Oppen
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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 more of your respondents have mentioned Rytary. For what it is worth, the drug has been a godsend for me. It is a time-release version of carbidopa/levodopa and I find that it can last some time for 4-5 hours. There are a number of capsule strengths, and it took me some time to find the right dosage. As with many PD meds, you and your Mom’s neurologist have to be flexible, willing to adjust the dosage. The major drawback of Rytary is its cost. I am fortunate. I have a great health plan, and I do not pay for Rytary at all. The “list” price that I see on my drug packages equates to an annual cost of $15,000.
As to her anxiety, some of the drugs being mentioned are quite potent, and I have not had too much success with most of them. The SSRI’s (Zoloft, Lexipro, et.al.) were particularly harmful to me, driving me to think some terrible thoughts about my continued existence. Some people have had success with these drugs. I agree with others that adding physical exercise and mentally relaxing pursuits (tai chi, meditation) may be helpful. If it is decided to stop the strong psychotherapeutic drug, it must be done slowly.
One other thing. Have you ever looked at DBS (deep brain stimulation) as a treatment for her tremors? This technique is admittedly invasive and will make you cringe when you first hear the details of the technique. BUT, it works. There are neurosurgeons in the US who have become experts at using this procedure, and I imagine that the UK probably has them also. There is another treatment therapy that I would research if I were you. Go to sonimodul.ch . A researcher/doctor in Switzerland has been doing some amazing things with MRI guided ultrasound waves aimed at the most affected areas of the brain. This technique was invented in Israel, and the Swiss institute has been using it for some time. It’s called Exablate Neuro. My neurologist has urged me to wait a while before pursuing treatment because I do not suffer from tremors. The technique’s track record with non-tremor aspects of PD is not as developed.
Hope you are able to help your mother improve.
Regards,
Steve
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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 located in Sarasota, Florida, and has been serving the PD community for over ten years. From humble beginnings, NCF has blossomed and become the “go to” source of PD-related information, programming and counselling for all of Southwest Florida (and beyond). When a “Sun Coast” resident receives that first PD diagnosis, they are almost always advised to contact NCF for guidance and support along this new, challenging journey.
The heart of NCF is the remarkable group of Care Advisors who interact every day with patients and caregivers. These are the folks who are on the front line of the PD battlefield, striving to support the PD community so that no one feels that they are making the journey alone. Led by a brilliant and driven Executive Director and a Board of Directors who are deeply involved in fulfilling NCF’s mission of improving the quality of life of people with Parkinson’s and their caregivers, NCF accomplishes its goals with a staff of only 7 dedicated people and a large group of volunteers.
I must mention specifically one outstanding annual event. In 2020, NCF’s annual Expo attracted more than 1,400 attendees eager to hear the latest about PD research, medications and other aspects of PD patient support. Between presentations by distinguished speakers, attendees are free to wander around the corridors, where representatives from drug companies, hospitals, makers of assistive devices, counsellors, etc. are happy to answer questions. I want to note that NCF’s expenses are funded from only two sources – donations and, to a much lesser extent, grants (no government support).
So, why am I telling you about NCF, other than to “toot our horn” to a wider audience than usual? Because I believe that the NCF model could be replicated in many locations in the US and internationally. I believe that an organization like NCF can be created wherever there is a critical mass of motivated PD patients and caregivers who are yearning to expand their treatment horizons.
Admittedly, NCF has grown because of its rather unique demography. Sarasota has a much higher than usual percentage of senior citizens. That means higher than expected counts of PD patients, many of whom live at a distance from family and need support. NCF has been blessed with financial support from very generous “angel investors” as well as receiving thousands of contributions from others whose lives have been impacted by PD.
Sorry, I went way over my allotted space. April is PD Awareness Month, and I feel strongly that my PD “sisters and brothers” should be aware of what can be accomplished.
Be well.
Steve Oppen
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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.
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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 – does it get any worse than that? Experienced a significant rebound a year later when I met Jane, the second love of my life.
I have some thoughts about how PD patients and their caregivers need to find purpose in their lives, and I would like to share some of my opinions with my fellow PD ‘ers.
Be well,
Steve
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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 , as others have already mentioned, most people on Neupro continue to take a form of levidopa, albeit at a smaller dose. I also wonder how well the patch will adhere to my skin once the humid weather of SW Florida makes its appearance. Will the patch stay in place, and what about when I go swimming in the Gulf?
Truth is that my having added a “booster” dose of Rytary in the afternoon is helping me avoid those awful late afternoon “off” periods for the most part. So, right now (I want to speak softly so that I do not disturb the PD gods), I don’t have enough of a negative experience to push me into trying another drug.
I have a new friend that has made an appearance – cervical dystonia. Oh, joy!
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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 weight, he attributed the majority of it to my dyskinesia ! And he may be right. Apparently, it takes a fair amount of calories to “bob & weave” all day long. But I’ll take the quirks of dyskenesia any day of the week over the horrible “off” periods that I can encounter if my Rytary doesn’t work properly.
Be well,
Steve
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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 – Rytary is still a branded drug and is VERY expensive. If I had to pay for Rytary, my expenses would be about $15,000 per year (that’s for a relatively heavy dosage schedule). I thank the lord every day that I retired from a very well-funded biological research institute, and my drug costs are covered completely by a fabulous medical plan. If you have the means (and I realize that many of us would have difficulty with the cost), ask your neurologist whether Rytary makes any sense. Your neurologist may be able to give you some samples to try.
Knowing that ” if you’ve met one PD patient, you’ve met one PD patient,” my experience with Rytary has generally been very good. I take the capsules one hour before each meal and one hour before bedtime. Rytary’s efficacy can last for 4-6 hours. But, of course, nothing with this disease is a fixed target. I have been experiencing more and more late afternoon “off” periods, and they are truly horrendous. All of the PD motor symptoms take over my body, and my anxiety levels go through the roof.
It so happens that I just returned from seeing my neurologist, and he prescribed a relatively smaller additional dose of Rytary, to be taken at 2:00 p.m. The hope is that the “off” experiences will diminish as a result of more levidopa in my system in the late afternoon. If the additional dosing does not help, or if my dyskinesia becomes unmanageable (currently, I can handle the “bobbing and weaving”), then we’ll have to go to Plan B. Plan B is a combination of Neupro (the patch) and smaller doses of Rytary.
I hope that my experience gives you something to discuss with your medical team. Good Luck !
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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. Their relative degree of frailty make them poor candidates. Another factor is that good candidates still respond well to their levodopa medicine. If you son’t feel better after your dosage of Sinemet, Rytary, etc,. then you probabky won;t get much benefit out of DBS. It may sound counterintuitive, but these are some of the qualities that neurosurgeons look at in making patient choices.
This is a very poor description of the csndidate sorting process, and I hope that someone with a strong science beckground can do a better job .