[Alan Tobey]

There are some unconventional ways to approach this concern, which may affect most of us males from time to time.  I have no insight for women, alas, but maybe male experience could help.

The common pharmaceutical approach is prescription Flomax (Tamulosin generically).. It does seem to regularize urine flow somewhat  in both the urgency and hesitancy directions, but I found it too unpredictable to be of great help.

instead I’ve embarked on a more radical path: learn to control the flow all by yourself. This follows successful projects to eliminate my former “Parkinson’s crouch” and shuffling gait by simple exercises, leaving me with what a physical therapist called “perfect posture;” and another project that has banished any concern for constipation by deliberately rebuilding some abdominal muscles that were not getting enough signaling to perform their crucial role correctly.

Now I’m exploring how to directly influence —I won’t yet say “conttol”  — what we normally think of as a urinary “valve”, but it’s not like a faucet and more like folds of tissue held together by more than one muscle.  If I pay close attention to what happens when I move my hips, I think I can sometimes stimulate a spot that helps open the valve, giving me some control.  But this is not a cure, and still a work in progress after six months. At least it already is helping.

I’m no magician or medical prodigy, just tired after 14 years with PD of  being given another prescription for a new problem instead of being encouraged to regain abilities we abandoned just because other PD symptoms claimed our attention. With persistence there’s no end to what we can improve on our own (with feedback from an actual doctor, of course.

[Alan Tobey]

We people living in grater Parkinsonia — patients and caregivers and families alike — tend to look only at our card when it comes to our transportation. Can I still drive? Or if not well, should I still risk it? And if not at all, what else is there?  But to succeed, we need to look at transportation as a SYSTEM with multiple pieces.  I hope some of my own experiences as a DWPD – Driver with Parkinson’s — will help you with your evolution.

I was lucky that we’ve lived in Berkeley, a small California city embedded in a region needing to move around in 5 to 20 mile chunks. Before I retired I could get a bus a block from my house that headed toward downtown or across the Bay, or walk about 3/4 of a mile to a BART station for regional links, or even bicycle surprisingly far. Calling our<span class=”Apple-converted-space”>  </span>district Walkable Wesbrae<span class=”Apple-converted-space”>  </span>symbolized the attraction of walking our groceries home a half-mile from the grocery store in a backpack, picking up exercise points along the way.

All that may seem like a transportation paradise. Yet most residents remain unnecessarily car-dependent.  As do I at age 77, they age ever closer to the dreaded day when they no longer qualify for a DMV license renewal.  And they think they will be left to depend on the loyalty of relatives and the kindness of strangers, feeling stranded most of the time.

But if you think about improving and creating your new personal transportation SYSTEM, the process can be confidence-building and even possibly enjoyable. Let me give you just two early steps to light the way.

First, deal with the driving issues openly and honestly.  Take a few “reminder” lessons to avoid some common problems, talk honestly with your instructor about how you can improve.   As your renewal approaches, get a professional written evaluation of our your abilities — and follow the verdict.  You may be more capable than you fear, and accepting some restrictions on where and when you drive may keep you behind the wheel for years more.

But even <i>before</i><span class=”Apple-converted-space”>  </span>that day comes –<i> </i>start working on alternatives.<span class=”Apple-converted-space”>  </span>I’ll tell you my favorite and why it works, even though there are are other good choices.<span class=”Apple-converted-space”>  </span>It’s that strangely ignored resource called “the bus” — yes, that big mysterious vehicle you see filled with strangers and going who knows where. <span class=”Apple-converted-space”> </span>

Three reasons to check out a bus ride: 1. Fares are usually discounted for seniors 2. If you live in even mid-sized places they get you close to many of your destinations, and these days you have more time to get there. And most of all 3. you have a<span class=”Apple-converted-space”>  </span>SYSTEM TO<span class=”Apple-converted-space”>  </span>GUIDE YOU THERE. <span class=”Apple-converted-space”>  </span>It’s called your mobile phone,<span class=”Apple-converted-space”>  </span>Open a map application, type in your destination, choose “transit” and you’ll have your step-by-step and bus- y-bus directions.<span class=”Apple-converted-space”>  </span>At first I couldn’t do that without first working it out on a paper map I had to carry.<span class=”Apple-converted-space”>  </span>Not anymore: I just write in where I’m going, and when I need to arrive, and I’m on my way.<span class=”Apple-converted-space”>  </span>The transportation SYSTEM may surprise me with an unknown route, but I’m never lost. I only need to be clear about where and when.

And I’ll throw in one more “plus for bus” reason to go there: the riders are much friendlier than on other systems — and why not, they’re more like you. <span class=”Apple-converted-space”> </span>

With one system conquered you can move on to others with confidence.<span class=”Apple-converted-space”>  </span>And even your former last-resort drivers will have a changed<span class=”Apple-converted-space”>  </span>view: “That Alan. He hardy ever calls me anymore.<span class=”Apple-converted-space”>  </span>I wonder what he’s up to?” It’s simple: you’re out having fun getting around on more and more pieces of your local bus SYSTEM and all its moving parts.

[Alan Tobey]

My “favorite” all-time reaction was just a month ago, when an inadvertent double dose of Aricept (aka “poisoning by neurologist”) caused me to experience eleven hours of multimedia hallucinations and a  jump in my MDR of dopamine drugs.  No extra charge@!

[Alan Tobey]

Here’s an unusual case: an endotoxin may have triggered my PD. For the ten + years before I became a PD warrior in 2009, I suffered from undiagnosed non-Celiac gluten intolerance, during which I produced large quantities of gliadin antibodies (reacting to one of the components of wheat) that as a side effect caused digestive upsets. When the intolerance was finally discovered there was no treatment except avoiding dietary wheat, But when I did that, my immune system continued to churn out the gliadin antibody for weeks at least. And in an unfortunate turn, the antibody also reacts with other proteins —- including some that trigger PD. Several things had to line up for that to happen —- lucky me.

[Alan Tobey]

Here’s the VERY BEST article on how to achieve and maintain a permanently unhunched back:

https://www.physio-pedia.com/Gait_Re-education_in_Parkinson%27s

The background is this:  it’s not your feet, it’s your toes and the direction in which they apply force (forward or backward).

We all start out with normal posture, supported by a normal and robust heel-and-toe stride.  Somewhere along the way, our system (or PD demon, perhaps) switches us to a toe-and-heel flat posture with curved back, perhaps to keep you “safer” by discouraging big steps.  Change your step and save your back!  For real!

I got myself referred to a physical therapist who looked at my gait and said I had to step forward further to fix it — but that was 180 degrees wrong.  When I showed her the right way she was shocked  but conceded.  I ended my engagement with her on the spot.  Don’t be discouraged, but don’t think the PT advice you get is automatically right.

[Alan Tobey]

Just as another possibility to throw in here, the good Dr. Gregor of nutrition facts.org discovered that the food densest In melatonin is the pistachio nut,  which seems like worth exploring. I’ve taken 6-1o of the brand  called Wonderful , common in California supermarkets, both at bedtime and occasionally when wide awake at night, and both seem to stimulate the same calming response.

Two reasons that I’m curious about further exploring: 1) The commercial tablets are so inexpensive that they provide no incentive to maintain  adequate quality control . 2. As with some other biological sources of supplements, the “pure” form of the extracted substance can provide a trademark.  But as with other combos such as curcumin  and turmeric, the natural form contains numerous other components  that may offer additional benefits without showing any downside.

if you’re curious, 10 nuts is not an excessive “dose”.  I’m tempted to see if mixing that into a small bowl of vanilla ice cream adds any further benefits . . .

[Alan Tobey]

In 2009 I was. just ending an unfortunate decade with undiagnosed non-celiac gluten intolerance — actually an intolerance to the gliadin peptide which, together with the celiac intolerance to the glutenine peptide, covers the whole gluten molecule. People with gliadin intolerance(more common on average among people descended from people living in northern European islands and coastlines), often inherit a gene variant which produces an altered form of the antigen-presenting T cell that allows it to ID and capture for an inspection by other T cells which can put them on the kill list for active processing. WHen the immune system was revved up by another active infection (in my case probably SHingles, the immune system apparently got an all-hands-on-deck message to be less discriminating in ID’ing candidate artive and aggressive foreign invaders; in this situation gliadin is among the enemy peptides nominated for attack. WHich the immune system did, mistakenly treating gliadin as evidence of a dangerous evil enemy, and firing up the whole defensive mechanism. Which includes the production of large quantities of gliadin antibody to be stored away for a future fight with gliadin in the form of wheat-containing gliadin..

Meanwhile, the same gliadin antibody has been discovered to cross-react with cells in the cerebellum, interfering with normal function there. This has been called “gluten atoxia.”

After diagnosis for gliadin intolerance, I learned that the only treatment is cold-turkey abstention, which I began early in 2009. About a week thereafter, I began having inflammatory symptoms — most consistent with the response to wheat allergies. At that point I had no gliadin in store (no wheat in my diet anymore), but the immune system had been toned up for daily battles with gliadin and kept pumping out more; gliadin antibody than ever. The best presumption is that this reached toxic levels, and cross-reacted with neural components that triggered my initial PD symptoms, setting off progression that hasn’t quit yet. In any case my reaction was immediate, with bradykinesia and resting tremor of multiple muscle groups (quadriceps and forearm primarily) appearing over a ten day period. ANd this trigger altered my normal system by further toxic effect, heading me down the not-quite-idiocratic path to 13 years of PD so far.

[Alan Tobey]

I’m surprised that the article and the responses so far make no mention of exercise, except to note that PD affects all muscles.

But it’s important to note that the muscles that are called to duty when needed at the end of a BM are mainly multiple core muscles used for multiple things.  And fit core muscles respond to the same exercises that are part of an overall core routine.

So as in much PD care, look to Pilates or another discipline instead just another pill bottle, and what may show up is a natural path to “getting a move on.”

[Alan Tobey]

In the fringe of this discussion is a discovery by Dr. Gregor of NutritionFacts fame, who had wondered if there are any natural foods high in melatonin. The top of the list is — pistchio nuts, with enough to be clinically interesting to the curious. I’m one, and have found roughly 5-10 kernels (Wonderful is a widely available supermart brand) enough to be gently effective for some in promoting faster falling askeep (but tame enough to encourage creative thinking among trialists). It tastes good, and the kernel surely contains enough other natural stuff along with “the” melatonin moilecule to complicate any attempt at real science. (But not enough profit potantial for sponsored research).

So in the absence of any known actual evidence in favor or agaibst I won’t actually recommend your own test except as just a likely amusement, but I do find this interesting. And I will note that the pill-to-pill variation in dosage of some-pharmaceutical-grade supplements like melatonin that cost a few cents each is well known. if you want a consistent test of melatonin, therefore, you may be better off going a little nuts.

[Alan Tobey]

If there’s any chance for humor in our part of the universe, we should embrace it.

Almost  nobody from the “outside”  knows enough about PD to use it as a pejorative. Any attention probably helps.

We can assist by showing we have a sense of humor. Two of my own contributions:

Name for a PD theater group: The ShakesPeers

Short joke. Q: How do two people with Parkinson’s seal an agreement between them? A: They shake on it.

Those were low-hanging fruit.  A better challenge would be to find humorous handles for some of the less-known symptoms, for example: anosmia, bradykinesia, dyskinesia, constipation, shuffling and getting stuck, and so many  more. I’d like to see a foundation like MJF sponsor a humor night – 5 minute standup routines, even if some of the contestants can’t stand up.

The serious point is this one: IT AIN’T OUR FAULT. But learning to live with it takes grace and charm, which we should be proud to demonstrate.

 

 

 

[Alan Tobey]

12 years into PD and managing pretty well, one thing I’ve learned/decided is to avoid “special” proprietary extracts, derivatives, “Breakthroughs,” etc.  The innovations usually are a product of marketing rathervthan medicine. But in an age when a single-molecule “pure” extract is thought to be better than the “crude”craw material, productizattion is inevitable.

With turmeric there’s some actual evidence that the extract, curcumin, is less active than the full powder because useful cofactors are lacking. So as a personal example,  my personal daily anti-inflammatory cocktail, derived from Ayurved8c medical traditions, mixes turmeric powder with flaxseed meal, ginger, amla powder, black cumin oil and a bit of black pepper — mixed into a “tasty” cocktail  with fruit juice.  This targets other things beyond just excessive inflammation, such as inhibiting my dormant prostate cancer, eliminating constipation,  and perhaps having some analgesic effects.  But there are no “pure” components; each is a mixture.  And most of the ingredients can be bought in an Indian grocery store at very cheap bulk prices.

A  simpler example of the principle:  instead of melatonin I use pistachio nut kernels that contain the “pure” compound along with cofactors that haven’t been tested yet (melatonin is not a big pharmaceutical money-winner).1 use about 6-8 kernels in place of a 1 g. Tablet and think I get the same effect.

so be cautious in what miracle molecule you choose.   Very often there’s a more complex, more effective form available for a lot less money. Turmeric powder beats cucurmin extract in several ways that matter.

[Alan Tobey]

In my 12th PD year I’ve learned to be minimalist and patient and to avoid running after the miracle molecule of the month. So with cannabis the first learning step I took was to start with a pure CBD tincture at a low initial dosage of 10 mg.  The experience was positive in two respects:  Subjectively,  the CBD makes me mellower and more relaxed without any stony edges or even any foreground awareness of an altered state.  Objectively I can point to two definite and measurable benefits:  taken in the morning, CBD dampens the higher-frequency tremors in my hands, improving my typing from very-terrible to merely bad, making me more functional. And it has essentially eliminated my osteoarthritis, which formerly appeared episodically for 7-10 days at a time at unpredictable intervals.  Given that every other substance recommended for “treating” osteoarthritis provided no more than palliative relief, this is a big deal for me.

Other cannabis explorations lie ahead, with further benefit expected.

[Alan Tobey]

You’ll find this post both more coherent and easier to follow up on if you use the correct spelling: melanopsin. cells.