[Jan]

I wish I had been aware of all of these suggestions for optimizing the use of the Neupro patch when it was prescribed for me a couple of years ago! I had increased insomnia after I started the Neupro, and the patches weren’t staying on very well, so I tried wearing it only for about 10-12 hours and removing it well before bedtime. I didn’t notice much if any improvement in my movements so didn’t feel that it was worth the hefty price tag. After reading some of the responses that include tips for using the patch, I almost want to try it again!

[Jan]

I have not had a FUS procedure but keep in mind that FUS is just the technology used; it’s a general term and there are a variety of specific PD procedures that could be done using FUS. It’s sort of like asking about laparoscopic surgery, which is a very general term, instead of specific laparoscopic procedures such as appendectomy or gall bladder removal. There is a Facebook group that’s all about the various FUS procedures for PD, so you may want to join that for more info (though keep in mind that the moderators are strong advocates of having FUS PTT at Sonimodul in Switzerland). I’ve talked to my MDS neurologist about it and he questioned whether there are any peer-reviewed studies to back up the Sonimodul claims and also why the main marketing mechanism is a Facebook group. So do the research and proceed with caution. There is a clinical study underway in the USA for bilateral FUS PTT but it allows a very limited number of participants and to the best of my knowledge all of the sites are already full.

[Jan]

Twin Cities in Minnesota, USA

[Jan]

I’ve tried a variety of acupuncture treatments but didn’t notice any changes so no longer get those.

[Jan]

I tried a variety of doses of Rytary, trying to replace my Sinemet 25/100 doses which I was taking about every 3 hours with fluctuating symptoms and side effects. However, I had some acute anxiety spells with the Rytary so I discontinued it & am back to frequent dosing with immediate-release carbidopa-levodopa.

[Jan]

You might have him look at this website – they have free daily practice sessions & lots of helpful information. Also there is an anniversary video that shows some PwP with speech difficulties both before and after speech therapy and it might inspire and/or convince him to try it. http://www.parkinsonvoiceproject.org

 

[Jan]

It seemed to improve my on time but unfortunately I had some acute anxiety attacks that I felt were tied to entacapone, and I didn’t have more of them since I stopped the med. As I recall, it also messed with my sleep cycle.

[Jan]

I wish I had faith like many of you have voiced, but I have yet to be convinced of God’s promise to us that He would only give us what was best for us. My mother died of pancreatic cancer and she was the only piano teacher in her rural area so after she died, a number of young students had no one to teach them how to play the piano. How could that possibly be what was best for them or for their rural area? She didn’t get the chance to meet some of her grandchildren or sew them a sweet stuffed bunny like she made for my daughters. How is  that what is best for those grandchildren? How does that show God’s faithfulness to us? And if the argument is that God didn’t give her the cancer, then the statement that “He would only give us what is best for us” doesn’t fit the scenario. And if Satan or the environment or her genes or her lifestyle or just dumb luck caused the cancer, then why wouldn’t the almighty & all-powerful God show His presence by miraculously curing her so that she could give glory to God and convince us doubters that God really does listen and really does want what’s best for us?

I’m not saying that I am choosing to be bitter vs better as a result of my Parkinson’s diagnosis. I think being bitter is generlly a waste of time and I don’t feel like I have enough time as it is so I sure don’t want to waste it by feeling sorry for myself (though I admit that I have wasted some of my time in this way!). I think we can each find meaning in our suffering, and we can each find ways to make the world a better place because of our experience with PD, but couldn’t we do those things regardless of whether we believe in God, Jesus Christ, Allah, Hare Krishna, Buddah,  Yahweh, or none of  the above? I still worship, pray, and give glory to God (attending virtual services because of COVID) but it’s more out of hope that some of what you say is true, not out of faith. I have tried to see God’s hand in my life and in the world around me but it has definitely not been revealed to me at this point, though I am envious of those who are so convinced and so trusting and faithful that God is omnipotent and loving and ever-present. Feel free to pray for me to get there!!

[Jan]

I’ve been curious about this product, too. Please update after you’ve tried it for about a month, Ron.

[Jan]

I didn’t have a very structured exercise program before the pandemic, but I’ve found a number of online options with programs that I can do at home with no special equipment. It’s not as socially stimulating as an in-person class would be but I can get to the class even in bad weather & never have to worry about whether my meds will be working or not. Most of the classes are recorded and can be watched on your own schedule, which is good and bad (sometimes I find I need the structure of a scheduled time). Here are a few (free) online options that I’ve appreciated: Wisconsin Parkinson Association (WPA) has a class every M-W-F morning on Facebook Live. If you miss the live class, you can watch the video later. Mary makes these classes a lot of fun, & you don’t have to live in Wisconsin to participate. She also told us about  http://www.TotalHealthWorks.com which has live & recorded Brain & Body classes on YouTube so I try  to do at least one of their classes every week. The 2 people who run this are a lot of fun; they are the founders/creators of the Delay the Disease program.

In addition to those 2 options, I sometimes want a non-PD exercise class so then I pull up a class from SilverandFit or from the YMCA’s ForeverWell program. There are daily Silver & Fit classes available for anyone to view; I think if you have a Silver & Fit membership through a Medicare plan, you get access to additional classes. Silver Sneakers is similar & I see that they’re allowing free access to their videos through 12/31. The ForeverWell program appears to be limited to YMCA members.

I’ve also participated in some voice therapy/exercise classes. The Parkinson Voice Project has a class on Facebook (recorded & live).  And ADPA has a weekly sing-along class called Sing Loud that meets for an hour via Zoom every Wednesday afternoon. I hope all of this is helpful.

[Jan]

Hello Beth,

My doctor prescribed for me the lowest possible dose of Mirtazapine, which is an anti-depressant but seems to help people with Parkinson’s sleep. I take it once a day, about an hour before I go to bed. It also reportedly has reduced tremors for some people but I’ve not had that result. I started taking Rytary recently instead of the regular carbidopa-levodopa, and that change seemed to mess with my sleep so now I’m also taking 3 mg Melatonin about an hour before bedtime. I’ve read that this is not an immediate fix but rather it takes a week or two of regular dosing of this over-the-counter sleep aid before it might be effective. I wish you luck – everyone is different but I personally can relate to your frustration about sleep issues!

[Jan]

<p style=”text-align: center;”>Rob, I enjoyed reading your response & love the dog-share idea though I’m not certain if a dog would love it. I’m not interested in getting a pet but that could change. We had a sweet Bichon Frise for 17.75 years. Nellie was a great companion but most of her life was during my pre-PD years. Shortly after I was diagnosed, my daughter called to chat & to tell me that she had read that pets were great therapy for people with Parkinson’s. Nellie was about 17 at that point & when I took the call from my daughter, I was mopping the carpet due to a pee accident by Nellie. My response to her, which is still my response today, was that it’s tough enough to navigate PD without having to deal with mopping up soiled carpets and getting up during the night or in the wee hours of the morning to go outside (especially when there’s snow or ice, as we have today in Minnesota!). That being said, I do miss Nellie curling up next to my feet and the unconditional companionship that she provided. I’m just not ready to devote a lot of time & energy to a dog or other pet when it feels like I need every minute of time & every ounce of energy that I have to try to live well with PD.</p>

[Jan]

I had a very similar reaction when I added Contam (entacapone) to my Sinemet doses recently. I’ve had shortness of breath & heart palpitations while on Sinemet alone, too, but neither my neurologist nor my cardiologist seem to think that’s the cause because that’s not a common side effect. However, I am certain that it’s the med, and after my experience with adding the entacapone I’m even more certain! Very frustrating though because it doesn’t seem like I have any other options for PD symptom control other than DBS.

[Jan]

I registered on clinicrowd a while back but didn’t find any solid direction as to how much mannitol to take. Their info mentioned how much a person weighing 154 lbs or 198 lbs should take, and it also says to “see detailed table below” but I was unable to view a detailed table. I’ve been taking a tablespoon daily (in 2 divided doses of 1/2 tbsp each) for about a month now and have not noticed any change in my PD symptoms. Perhaps I should try increasing the dose. I was really hoping there would be a detailed table on clinicrowd to provide more guidance. I’m also interested in viewing a recording of the Instagram Live discussion, as I learned about it only after it took place.

[Jan]

Hi C Morts,

While I hate the idea of taking a medicine to control the side effects caused by a different medicine, you might ask your doctor about mirtazipine or doxepin. They are anti-depressants but have been found to help with anxiety and sleep issues in people with Parkinson’s. I take a low dose of mirtazipine at bedtime and I think that has helped control anxiety. I did not notice increased anxiety when I tried Rytary (at least I don’t remember having that side effect) but I definitely had that side effect from Comtan so I wouldn’t be at all surprised if C/L could also have that effect. I don’t know your sex but also something to keep in mind is that way back when Sinemet was tested (carbidopa-levodopa), the majority of patients in the clinical trials were male…so my feeling is that there are other side effects that can be attributed to C/L, especially in female PwP!

[Jan]

Would you mind sharing how much you take & which brand you use? I purchased some on Amazon probably a year ago & didn’t notice any change in my symptoms. I don’t recall how much I took or how long I took it, but I think I tried it for at least a month.