Mike P

Sinemet (one 25/100 tab twice daily) hasn’t worked great for me. I never feel much improvement, I just know I feel worse when I don’t take Sinemet. I’ve had visual disturbance side effects with all dopamine agonists in the past. I was going to give dopamine agonists another try but my MDS mentioned Nourianz as a possible add-on instead. I am…[Read more]

Mary Beth-

Cross-training works great for me as a full body workout. Based on some recommendations, I ordered one of those infomercial workout programs back in 2010. I was working for an organization where everyone worked from home and I needed a spark to stay active. A co-worker and I made a pact where we went through the program together and we…[Read more]

Thanks Russell. Last year I started on generic 0.375mg pramipexole (manufactured by Dr Reddy labs) once daily at bedtime for a week and had mild visual disturbances (seeing brief flashing lights upon waking in the dark) the first few nights. After a week, my MDS bumped me up to 0.750mg at bedtime and I experienced the same flashing lights 5 nights…[Read more]

Mary Beth-

My foot dystonia is triggered by repetitive activity that has little variation (straight line constant speed walking/running, stationary bike, etc.). It’s much less of a problem with cross-training or a hike in the woods. I find I really have to listen to my foot. When I start to feel any discomfort I back off right away and stretch.…[Read more]

Let me preface this by saying I am not a doctor and this information should be confirmed with your husband’s doctor and other pharmacists:

Before the MAO-B inhibitor Azilect (rasagiline) (approved 2006), another drug named selegiline (approved 1989) was widely prescribed as an MAO-B inhibitor. Selegiline had tyramine warnings and interactions.…[Read more]

I have been a cardio junkie for years but foot dystonia has put a cramp in my running game. I considered peloton but didn’t want to invest that kind of cash until I could confirm that the foot dystonia that I experience while running would not be triggered by the exercise bike. I watched a lot of YouTube videos on how to roll your own Peloton b…[Read more]

Bob, that sounds terrible. Sorry to hear that. My PD is limited to my dominant side mainly in the form of rigidity and bradykinesia. No tremor. One of my first symptoms was foot dystonia. When running, my foot would curl up after about 1.5 miles. It never happened with any other activity, just the repetitive running action. Over the years it’s g…[Read more]

I’m 47 years old and I’ve been on 1mg daily generic Azilect for 2.5 years. Like most others, I have not noticed any PD symptom improvement from Azilect. I’ve tried dopamine agonists, amantadine, Artane, generic Sinemet, and Rytary. I had to stop the dopamine agonists, Artane, and amantadine due to side effects. Rytary didn’t work for me any better…[Read more]

Hi Jean- I have been on generic Azilect for 2+ years. I have never noticed an improvement but I continue to take it since I have no side effects and it may possibly be neuroprotective in some capacity. My MDS gave me some samples to try for Xadalgo to see if it helps better than Azilect. I am still debating if I want to try to make the switch…[Read more]

Mary Beth-

Given my age (47), my MDS wants to be very careful increasing C/L dosage. Dyskinesia commonly occurs within 5 years for younger populations after they begin taking C/L. Several recent studies have suggested that C/L is not disease-modifying and the dyskinesia is just a result of disease progression. If that’s true, many believe y…[Read more]

I am 47 years old and my MDS has suggested I switch from (1) pill of 25/100 generic Sinemet twice daily to (1) pill of Rytary 36.25/145 twice daily. So far it’s been much less effective but it’s only been 5 days.

Wow Jean. Your reply is so relatable. I share exactly the same symptoms and feelings.

I’m 46 and was diagnosed 3 years ago and have had symptoms for much longer. My voice is definitely softer. People always ask me to repeat myself and my family tells me I’m too quiet. I can speak louder with conscious effort but feel like I’m being extra loud when it’s actually just right. I coach soccer teams for my kids and shouting to players…[Read more]

Hi Toni-

I’m not a doctor but I’d recommend touching base with your neurologist and express your concerns. They might want to run some tests (e.g. B12) and review your medications. I have learned that some PD medications have been known to have side effects like brain fog and memory issues. I wouldn’t recommend changing any medication withou…[Read more]

Hi Jean-

I believe you have indicated in the past that, like me, you are more impacted by PD on one side. Do you find that your more affected hand is usually colder than your less affected hand? My Parkinson’s symptoms are limited to my dominant side and my dominant hand is always much colder than my “good side”. That makes sense to me given…[Read more]

The keyboard you linked has the brown switches, not the blues. The brown switches are pretty good providing a tactile bump. You may prefer the blues that have a tactile bump and an audible click. A mechanical keyboard is a big investment so I would recommend getting a key switch sampler that allows you to test out each of the different switches…[Read more]

Jean- You may want to consider a mechanical keyboard. It requires much more force but it helps me tremendously giving tactile (and sometimes audible depending on the key switch chosen) feedback as to when a key actuates. This is especially helpful for me and my hand stiffness to signal when I’ve accidentally pressed a key with my rogue hand. I…[Read more]

Jean- I am trying to determine if I am somewhat levodopa resistant (25-100 twice a day) or if I just have not progressed enough to appreciate it as a miracle drug. The main reason I take this medication is to help me continue to work. I am a computer programmer by trade and it becomes very difficult to type with my right hand as the day progresses…[Read more]

I joined the MJFF and 23andMe project and my results came back negative for the LRRK2 and GBA variants. Hopefully they expand the project to test for some of the other variants that they think are related to Parkinson’s disease (e.g. PARK7, SNCA, PINK1, etc.).