[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 just starting to research it. It looks interesting and I may try it.

[Mike P]

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 got in the best shape of our lives within a few months. I’ve built up a large video library of similar extreme cross-fit style workout programs as well as yoga and stretching over the years and do them regularly. They are definitely NOT for most people. People suffer a lot of injuries in extreme cross-fit programs that push you to your limits for many consecutive days. But, they work for me.

[Mike P]

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 in a row. My ophthalmologist said it’s nothing to worry about and something about switching rods and cones and it could be a sign the medication was working. It spooked me though so I tapered off. I may talk to my MDS about giving pramipexole another try. I tried Rytary for a month and didn’t notice any difference from generic Sinemet. Maybe I’m not patient enough.

[Mike P]

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. If I try to power through it comes on quickly and is more prone to happen for the rest of the day. I’ve experimented with Sinemet timing and haven’t found the Sinemet ever helps. It’s the same for me even 1-2 hours after a Sinemet dose on an empty stomach.

[Mike P]

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. When Azilect was first approved it carried the same tyramine warnings since it was the same class of medication. After a sizeable population had used Azilect for a number of years I believe the FDA revised the prescribing information for Azilect to remove the tyramine dietary restrictions. I think doctors and pharmacists still advise caution out of an overabundance of caution. I wouldn’t eat a lot of stilton cheese but anything else should be fine. I’ve never had any issues over the past 2.5 years. Again, please verify with your doctor and do your own research.

Another advantage of Azilect over Selegiline is that Selegiline breaks down into the metabolites methamphetamine and amphetamine which causes insomnia. Metabolism of Azilect is different and doesn’t have these same metabolites and doesn’t have the same insomnia issues that people experienced with Selegiline.

Think of Azilect as a new and improved version of the older MAO-B inhibitor Selegiline.

The thing you really need to pay attention to with any MAO-B inhibitor including Azilect are the drug interactions! Always check with your pharmacist before taking anything, even OTC meds and herbal remedies while on Azilect. It interacts with dextromethorphan (cough syrup), tramadol, St John’s wort, Flexeril, sinus meds, Visine eye drops, etc. My doctor told me to tell my dentist to use lidocaine only for fillings and avoid anything with epinephrine which includes almost every standard anesthetic used by dentists except plain lidocaine. Before any surgery, your husband may need to discontinue Azilect for a couple of weeks to avoid interactions with anesthesia meds.

Hope this helps.

 

 

[Mike P]

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 bike. If you already have an iPad and an Apple watch, you can be up and running on the Peloton app with a stationary spin bike and cadence sensor for about $325 via Amazon. Unfortunately for me, my foot dystonia was still a problem. But, my wife loves the setup and uses it daily.

As others have stated, the exercise benefits require really pushing yourself beyond your comfort levels (under a doctor’s supervision obviously). It takes a very long time to appreciate cardio. I never thought I’d become a runner when I started. I was a total couch potato. I hated it the first, tenth, and fiftieth times. After about 6 months I began to look forward to the runs.

I can’t run as much anymore due to the foot dystonia so I do those crazy beach body videos, yoga, stretching, sparring, etc. I’m also looking into RSB given everyone’s recommendations. I’d recommend everyone do whatever you can to stay as active as you can with your doctor’s supervision. Keep at it one day at a time. If you miss a day don’t beat yourself up about it. Get back at it the next day.

[Mike P]

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 gotten worse. Now it happens about 6-8 times during a 5k run and also happens with biking and even walking. Sinemet never improved that symptom. Extreme cardio exercise gives me lasting moderate PD general symptom relief up to 12 hours but it’s near impossible to achieve with the foot dystonia. That’s nothing compared to what you’re dealing with.

[Mike P]

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 than generic Sinemet, so I’m only on 1mg Azilect once daily and 1 tablet of 25/100 generic Sinemet twice daily. I have never felt much better from any PD meds but I feel worse if I don’t take them. My MDS recommends I keep taking it in case the neuroprotective benefits are proven. I have no side effects from Azilect so I keep taking it just in case.

[Mike P]

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 since I would have to stop Azilect for a minimum of two weeks first and insurance is an unknown. If I decide to experiment I will call the pharmacy first and see what the price difference would be. Hopefully they can check with insurance before they have a script. PD patients especially need a pharmacy price checker option since the never ending experimentation has so many options.

[Mike P]

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 young-onset patients are wasting potential golden years by delaying C/L treatment. My MDS wants to err on the side of caution and be very cautious with C/L dosage to minimize the possible risk of developing dyskinesia sooner rather than later. The immediate-release hasn’t been very effective for me at the low dose I take (total daily dose of 50/200) so she wants to see if a more levelized controlled-release version would work better for me without having to significantly increase the dosage. I never feel much better after C/L but I definitely feel worse if I don’t take it. I was hoping C/L would be a miracle of difference and it has been disappointing so far. Finding the right dose seems like it will be a long journey based on what I’ve read of others’ experiences.

[Mike P]

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.

[Mike P]

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

[Mike P]

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 downfield makes me go hoarse more easily than it used to, especially at the start of the seasons.

I’ve been considering LSVT Loud training.

[Mike P]

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 without your doctor’s approval

I’ve had side effects with every medication and had to decide if the pros outweigh the cons. Keep us posted!

 

 

[Mike P]

I only have an internal tremor and it exhausts me. I never knew how to explain it to people until I came across this blog post which described it as:

I do not have a visible tremor, but I feel an inner tremor. It is difficult to describe, but it’s like electricity inside your body all the time and you can’t get rid of it. You want to just stretch, move, shake it out. But you can’t. There is a constant vibrating electricity inside my body.

It arrived slowly and I really wish I could evict it some days.

[Mike P]

Hi Howard-

I just saw a PD gift guide that Allison of The Perky Parkie compiled. On it was a 360 Degree Swivel Chair:

The 360-Degree Swivel Cushion makes it easier to get in and out of chairs and car seats. Simply sit down and rotate your body to swing your legs and lower body into place. Now, how easy is that? Let’s see you jump out of that car with grace.

Maybe that would help you?

 

 

[Mike P]

Every year I cut down a Christmas tree with my father. This year was our 43rd year of the tradition. For the first 34 years, we had three generations together: me, my father, and my grandfather. My son joined the tradition when he was 3 years old and we had four generations together for six straight years until my grandfather’s passing. Throughout many changing life situations, we have always made it work, even when we lived 700 miles apart. We ventured out again this year with my dad and son and all cherish the tradition- even the moody teenager! My son promises he’ll drag me on a sled (as I did him in early life) if necessary in future years. I’ll hold him to it when life comes full circle!

[Mike P]

I can relate Jean and Christine. I have exceptional heat tolerance but zero cold tolerance and get chilled to the bones so easily. I shiver violently once I get chilled and it’s very hard to stop. The internal tremor gets turned up to 11. New England is probably not the smartest place for me to live given my cold intolerance. I make sure I am way overdressed for my kids’ baseball games in the spring and soccer games in the fall. That’s me in the heavy down jacket with merino wool sublayers on a 50 degree cloudy day.

[Mike P]

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 rigidity and bradykinesia and I’ll bring it up with my MDS but I thought I’d ask if others have the same experience.

[Mike P]

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 and see what you prefer. Amazon sells the sampler for $19 and it makes a great fidget toy after you make a decision. If you decide you like any of the key switches on the sampler I can provide some recommendations for keyboards that use those particular switches.

Amazon link: WASD 9-Key Cherry MX/Zealio Switch Tester with Keycaps and O-Ring Sampler Kit https://www.amazon.com/dp/B07V4H646W

[Mike P]

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 prefer keyboards with the Cherry MX switches of which there are many varieties. Some of my favorites include:

– Cherry MX Brown: A little quieter than the others and provide a tactile bump when the keys are actuated
– Cherry MX Blue: Provide both a tactile bump and an audible click when the keys are actuated
– Cherry MX Green: A stiffer version of the blue

Cherry MX blues and greens would not be a good choice for a collaborative office environment. The clacking noise can be quite loud similar to the old IBM buckling spring keyboards. I work from home and love my keyboard with Cherry MX Blues. YouTube has a lot of videos reviewing the different key switches. There are many different keyboard manufacturers that use Cherry MX key switches.

Mechanical keyboards are not cheap but extremely durable. Amazon and keyboard sites sell sampler strips where you can test out each of the different switch types.

If anyone ever wants to venture down the rabbit hole of mechanical keyboards let me know!

[Mike P]

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 when it stiffens up and slows. The CL helps a bit but I’d say it just takes the edge off rather than dramatically improve the bradykinesia and stiffness. My MDS and I had failed experiments with dopamine agonists and amantadine. Azilect doesn’t improve my symptoms at all. I am debating weaning off the CL until my progression is more significant.

[Mike P]

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.).

[Mike P]

“Mild parkinsonisms” (reduced arm swing, bradykinesia, dystonia, and slight cogwheel rigidity- all limited to one side) first sent me to an MDS neurologist back in 2016 at age 43.

The initial B12 testing in 2016 was just part of comprehensive Parkinson’s screening to rule out other possible causes or contributing factors (brain MRI, cervical spine MRI, comprehensive metabolic panel, CBC, HIV, Lyme disease, B12, magnesium, phosphorus, copper, RPR, ceruloplasmin, TSH, methylmalonic acid, catecholamines, metanephrines, ANA IFA, and syphilis). Everything else was ruled out leaving PD as the most likely remaining explanation confirmed with a followup positive DaTscan.

My boosted B12 levels don’t improve my parkinsonisms. I think I have much more energy. I was mainly interested in boosting B12 to support my remaining healthy neurological function and based on some theories that lower B12 levels can contribute to faster PD progression. If I hadn’t reviewed my older low-borderline results and asked for a retest, I am not sure we would have discovered that my slowly declining B12 levels were a result of pernicious anemia where the body is unable to replenish B12 stores from food or oral supplements.