[Mike P]

I definitely experience apathy. I initially confused this with depression when I first noticed that I was not experiencing happiness from things that used to make me happy. After some introspection, I realized that I wasn’t experiencing any lows either. I didn’t know apathy could be a thing for humans. I find meditation helps when it’s done with a focus on gratefulness and seeking happiness. As Heather Kennedy reemphasizes, “Hunt the joy!”.

 

 

[Mike P]

Last summer I read about the importance of maintaining good B12 levels, especially for Parkinson’s patients. I went back through my history and saw that my B12 levels were 258 back in 2016 (at age 43) when my MDS ordered bloodwork as part of the diagnosis process. While on the low end of normal, I guess it was still considered normal, or at least not the cause of my symptoms. At my most recent quarterly checkup I first met with a PA and she agreed to retest and recommended maintaining levels above 400. My retest was 195 and she referred me to a hematologist who did some more tests (intrinsic factor blocking antibodies) and diagnosed me with pernicious anemia. I now receive monthly B12 shots and my levels are 600. I seem to have a lot more energy. For anyone not seeing increases in B12 levels despite taking  oral supplements you may want to research pernicious anemia and ask your doctor if a blood test may be warranted.

[Mike P]

Hi Jean. I just enrolled in this study and am awaiting my kit. My MDS previously tested me for GBA (negative). I’ll report back if any come back positive.

[Mike P]

Does anyone else take carbidopa-levodopa only twice daily as my neurologist prescribed? It seems as if the more typical regimen is three times daily.  I have been taking one 25/100 tab at 8 AM and one 25/100 tab at 4 PM per her instructions and fasting at least 2 hours prior and 1 hour after the doses. She said if I don’t need it at night there’s no reason for an evening dose.

I find that the 8 AM dose is very ineffective despite fasting before and after the dose. The 4 PM dose helps a bit. I am theorizing the 8 AM dose is not as effective since it’s been 16 hours since my last dose.

What times do you typically take your carbidopa-levodopa doses?

[Mike P]

I make sure I do not eat anything at least one hour after taking the dose. I do drink coffee with a little bit of non-dairy creamer which I don’t believe has very much protein if any at all. I am working on converting to black coffee. Thanks for the tips in case I get nausea. So far so good.

[Mike P]

I can relate. Every morning I wake up completely exhausted. Many mornings I feel hungover despite not having a drop to drink. At night I can fall asleep very quickly and I sleep soundly but I find I need more and more sleep now to function. Years ago I never needed more than 5-6 hours of sleep. Now I need a minimum of 7-8 hours of sleep. Otherwise, I need a nap during the day.

I had my doctor test my B12 levels after reading an article here that said low B12 was common in PD patients and may be linked to disease progression. The tests confirmed I am B12 deficient and I’ve started taking supplements prescribed by my doctor. I’m hoping my low B12 is a contributing fatigue factor and mornings will get better once my B12 levels get back where they should be.<span class=”Apple-converted-space”> </span>

[Mike P]

 

This article let me to discussions with my MDS about B12 levels, some tests, more tests, and a diagnosis of pernicious anemia (early stages).

After four weeks of weekly B12 injections, my B12 levels increased from 175 – 550. My doctor now wants me to continue with monthly injections. It has been two weeks since my last injection. I definitely have more energy.

[Mike P]

Hi Jean-

My MDS actually prefers email (secure portal messaging) as the primary communication method. Unfortunately, it is very hit or miss for me in terms of both timeliness and quality of response versus when I see her in person. I have to be very brief otherwise my doctor often asks me questions for information I already provided in the message. It’s a delicate balance between being concise and being able to provide all the information that she needs to make a recommendation. I actually need to talk to her about that next visit and find out why we often have miscommunication over portal messaging. Does she tend to skim due to time crunches? Does a poor user interface on her end make it difficult to read? Is there a tiny bit of a language barrier occasionally? Since there are no office visit charges for these communications do they receive less priority/focus? We will figure it out.

[Mike P]

 

I just began taking the generic version of Sinemet manufactured by Actavis. My MDS provided me with the following titration instructions:

Carbidopa/levodopa 25/100

• Week one: Half a tablet by mouth one hour prior to breakfast
• Week two: Half a tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
• Week three: One tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
• Week four and on: One tablet by mouth one hour prior to breakfast and one tablet by mouth one hour prior to supper

That seems really conservative but I am not in a rush.

I am in the middle of week two and so far so good. I had side effects that outweighed the benefits for just about every other PD med including amantadine, artane, and all three non-ergot dopamine agonists (mirapex, requip, neupro).

I second your recommendation for that book. It is a really good one.

[Mike P]

 

On the very first night of the 2mg Neupro patch, I had the same visual disturbances I had with low doses of both Mirapex (pramipexole) and Requip (ropinirole).

After being in a deep sleep I see flashing lights upon waking (2am, 3am, 4:30am) that slowly dissipate. They were more intense than they were with the previous dopamine agonists. Argh! I’ll give it another week to see if my body adjusts to the medication.

[Mike P]

Jean-

My symptoms are limited to my dominant right side. It’s interesting how every person’s symptoms and response to meds is completely unique.

[Mike P]

I’ve been on 1mg daily of rasagiline (Azilect) for about two years. I don’t notice any improvements with Azilect. There was a study that theorized this drug may be neuroprotective. It wasn’t proven to be neuroprotective at a higher dose so these claims are not fully supported. But, it could be neuroprotective, it’s easy for me to take once daily, and I have no side effects.

Amantadine was a failure with night sweats and terrible nightmares.

Two dopamine agonists were busts for me: Pramipexole (Mirapex) and ropinirole (Requip). I experienced visual disturbances (doctor speak for hallucinations) where I’d see bright flashing lights at night.

Artane didn’t work for me either. I’m in the process of tapering down the artane (currently 4mg daily titrating down 1mg per week) because I experienced various side effects at 7-8mg: extreme dry mouth, dry eyes, and either euphoria or panic 60-90 minutes after a dose.

I didn’t notice any symptom improvement on any of those drugs but I could never get to therapeutic doses with the side effects I experienced.

My doctor wants me to try one more dopamine agonist before last resort C/L: Neupro (rotigotine). I have the script filled but am being careful as to when I start the med given my previous dopamine agonist side effects. When trying new meds I wait until I know I won’t need to drive for a few days just in case.

[Mike P]

My MDS neurologist ordered one genetic test for Gaucher’s disease (GBA) that came back negative. Apparently there are some new targeted PD treatments for people that have Gaucher’s disease. I’ve been told there are other treatments in development for the other genetic PD associated genes such as PARK7, SNCA, LRRK2, parkin and PINK1. I’m definitely interested in having more genetic tests done if there are associated clinical trials for those genetic mutations.

I’m wary of donating my DNA to the big commercial outfits. Their privacy policies seem sketchy and subject to change. I read that 23andMe is partnering with the Michael J. Fox Foundation so that makes me feel a little better.

I completed the biomarker study through MJFF and I hope my DNA is helpful for their research.

[Mike P]

I began to have frustrating symptoms at least 6 years prior to diagnosis when I was 37 years old. When pitching to my son I noticed that I could throw a few buckets and then I would get the yips and would lose all accuracy. I chalked it up to some type of shoulder injury as my shoulder was often stiff.

Other ongoing right arm issues included quick fatigue in my forearm and hand. If I was assembling something that required the use of a screwdriver for more than a minute or two my forearm would get exhausted. I’m a computer programmer by trade and never had the best ergonomic setup. I suspected I had some carpal tunnel issues that explained the arm fatigue.

Another symptom I had no idea was related to the others was right foot cramping (dystonia) that only happened during runs. I figured this was some type of plantar fasciitis.

The final symptom that sent me to the doctor was an occasional very slight cogwheel ratcheting in my right wrist when using an eating utensil. When I casually mentioned the ratcheting to my healthcare professional mother, and she saw it for herself, she encouraged me to go see a doctor as soon as possible.

I told my doctor I had a bunch of nagging injuries piling up and mentioned my injury symptoms. I rated them as annoying but explained that none of them were debilitating.  I asked my GP if he thought an MRI of my right arm and shoulder was appropriate. My GP referred me to a MDS neurologist just to cover all the bases. It took me 4 months to get an appointment. To a trained neurologist, my bradykinesia, dystonia, and rigidity limited to the right side had a much more likely explanation.

However, I do consider myself fortunate to have a fast path to a first opinion diagnosis where all visits and tests were covered by insurance.

[Mike P]

I’m the opposite. I can go for a run when it’s 90°F with 85% humidity. I can’t tolerate the cold. If I start to get cold with combined stress I get the shivers easily. It’s hard to not appear to be a human sewing machine when attending my kids’ soccer and baseball games late fall or early spring in New England. Multiple base layers of merino wool help.

[Mike P]

To the best of my knowledge, no blood relatives in my extended family have had PD. My parents can’t think of anyone they encountered in the family that ever exhibited any symptoms and went undiagnosed either.

I guess I’m the big winner of some long odds for YOPD. ? I keep hoping I can reproduce those long odds for the lottery but no such luck yet!

[Mike P]

 

I use an app named “Due” for iPhone/iPad. I like it because it’s relentless with reminder notifications that are hard to miss/ignore. I am not affiliated with the creators of the app in any way. I’ve used it for years and find it incredibly useful for any really important reminders.

 

 

[Mike P]

I am starting Neupro (rotigotine) tomorrow with a 2mg patch for the next two weeks. I’ll report back my experiences.

I had visual disturbance side effects with low doses of both Mirapex (pramipexole) and Requip (ropinirole) where I’d see flashing lights upon waking.

I had to taper off ropinirole after 3 mg total daily.

I had to taper off pramipexole after 1.5 mg total daily.

I think it’s likely that I’ll have similar side effects with Neupro (rotigotine) but we shall see. My neurologist wants me to give all the dopamine agonists a try before generic sinemet.

[Mike P]

I’m 46, diagnosed 3 years ago, symptoms for 7+ years. My symptoms are limited to my dominant right side. I have used dictation software on and off for about 7 years. I use it more towards the end of the day when my hands are fatigued which exacerbates the bradykinesia and rigidity.

I used Dragon Dictate for Mac for many years. The Windows version of Dragon software is vastly superior, so much so that Nuance (parent company of Dragon) suddenly discontinued the Mac version of the product via a press release. The Mac version still works fairly well, but there are no guarantees, and it’s no longer for sale for the Mac. The Windows version continues to thrive. It is very pricey but is leaps and bounds better than the alternatives. I now use the Windows version via a virtual machine on a Mac.

Apple Dictation should greatly improve *fingers crossed* with the new accessibility features (follow the link and watch the video under “Accessibility”) in the upcoming fall release of their new macOS Catalina operating system. There will be new accessibility features in iOS 13 for iPhone and iPad as well. I’m optimistic and thankful that Apple continues to dedicate time and energy towards improving accessibility.

I have tried most of the others you reference and they weren’t robust nor accurate enough for me.

 

[Mike P]

I do drink nondairy milks as I try to move away from dairy given the research. But, they all have protein. :-/