Looking up research on the European version of PubMed, called EuropePMC

A friend recommended using EuropePMC, https://europepmc.org/  as an alternative to PubMed (thank you, Chris).  This repository describes themselves as:

• Europe PMC is an open science platform that enables access to a worldwide collection of life science publications and preprints from trusted sources around the globe.
• Europe PMC is developed by EMBL-EBI. It is a partner of PubMed Central and a repository of choice for many international science funders.
• Free, transparent, and community-driven, Europe PMC is your gateway to life science research.

Doing a search on EuropePMC is similar to doing a search on PubMed (which works much like a Google search; see this recent blog post), but the search results can be quite different.  Hmm.  Why?

Many things are the same with PubMed and EuropePMC. There are Basic (like a Google search) and Advanced search available in both (for searches by journal, for example).  You can also sort the results by date or by "relevance"/"best match."  Further, you can limit results for a particular date range and whether there is a free article available for both, and you can search by article type, but each repository does it differently (advanced search in EuropePMC, filters in PubMed).  The way the two identify free articles (full articles available to all) is a bit different, but both seem to have the same access.  In addition, both have ways to tell about other research that cites this article (a real-world measure of influence), show links to similar articles, and highlight keywords.  Here is an excerpt from a sample EuropePMC search:

The more restrictive your keywords are, the more similarities you find between the two tools.  When I used the keywords (example: Parkinson's dementia rivastigmine) and sorted by recent date, the first article is the same - but many of the rest of the citations/abstracts are not.

But what causes the differences?   Partly different journals are available (there are more in EuropePMC), but partly, I suspect, because of different indexing (selection of keywords for each article).  Here's a recording of a webinar about how to do search on EuropePMC:

Another difference is that PubMed will let you email a search to yourself, which is handy if you use multiple computers;  you can email just the citations in EuropePMC, but since EuropePMC saves your previous searches - and you can sign in to the system - the email may not be as important.  Also, some features in filters on both platforms don't seem to work, but I can't tell if this is a limitation based on indexing that just hasn't been done.

I happen to prefer PubMed, probably because I'm used to it.  But I use both repositories to search research.  When I don't find results in one, I often can find results in the other (one of the reasons I suspect the indexing is different).

See which one you prefer.

Suppose you want a complete research paper but you only have the abstract

Sometimes the abstract is so brief that you want to know more.  Sometimes it doesn't summarize anything including the conclusions (grrr).  Or maybe people are talking about it and you want to know what they are talking about.

What are some ways to get the paper?

1.  The NIH requires that any study it funds must open their research results to all; some foundations do this, too.  (But not enough of them.)  Some journals only publish as "open access," so all their papers are available, too.  For these, you will see some variant of this, over on the PubMed abstract, upper right side:

2.  If you click on the DOI number on the PubMed abstract (right under the authors' names), sometimes that will give you a full version of the paper, even though the official link (see #1)  does not.

3.  If there is a corresponding author and email available on the abstract, you can email this person asking for the paper (give the precise title because they may be involved with a lot of papers and projects).  Most will give it to you.  Quickly, too.

4.  Google the exact title.  Some researchers have placed their paper on a university website.

5.  Ask a friend/family member who may have access to bio-medical journals on-line at work.  Know anybody who works for a college or university?  (Just don't wear out your welcome.)

6.  Rent the article (available for a fee from some publishers, but much less than the $35/article that many publishers charge for purchasing the article.)  Some publishers offer this.  Copy and paste the article into your word processor so that you have time to read it without worrying about the limited rental period.

7.  Then there is the illegal way.  A Russian maintains a website for access to full papers - sometimes an early version of the paper is available.  https://sci-hub.tw/   

Here's the rationale behind Sci Hub:

Donations are accepted in Bitcoin which means they're untraceable.  The Russian internet seems to be the Wild West, so Sci-Hub operates there without benefit of a government enforcing copyright law (that's the illegal part). There is probably some risk because this is Russia.

Sometimes on Sci-Hub instead of the paper, first there will be incomprehensible directions in Russian.  This is very like Captcha.  Type in the English letters that are shown and click the Russian word below.  Sometimes this works and sometimes it doesn't.

Lots of different ways to get the full paper if you really want to read the whole thing.  

I find that the particularly useful parts of the paper are:  # of patients who participated in the study, and # of participants by gender, if it's a clinical trial; Discussion; Conclusion.  

What do you want to find out?

Using the new PubMed

PubMed is a free database that has more than 30 million abstracts (summaries) of biological/medical and life sciences research, from MEDLINE, life science journals, and online books, and is located in NIH.  Sometimes there are links to the full-text research as well, not just the abstracts.

Why would you want to use PubMed instead of Google (or even Google Scholar)?  Because much of this research isn't available on Google/Google Scholar, and PubMed has terrific tools that make its use really easy and useful.

While you can search it just like you do Google, there are many additional filters that make PubMed more useful.  (And by the way, it says "Log In" but for looking up research, that's not required.)  Let's look at an example of search results to see some of PubMed's useful features:

The default sort is Best Match, that is the abstracts that best meet your search.  But if you prefer, you can change this to Most Recent, the abstracts in date order, with most recent first.  Any restrictions using the filters are highlighted in pink in the center of the page.  You can see that I've used the Article Type Review to limit abstracts to just Reviews, since Reviews are often evaluations of many related pieces of research.  Also notice that the search terms are shown in bold in the search results.

These are not all the possible filters, but seem to be frequently used - such as only "full text," or only published in the past "5 years."

If you look at an Abstract (PubMed calls these citations, but virtually all are abstracts), you can see information such as the authors - and if you click on Expand next to the authors' names, you can learn an email for correspondence, and what institutions the authors work for.

Also, you can see the full-text link, in the upper right (which will say "free" if anybody can see the article), and also the DOI number, under the authors' names - a clickable link that will occasionally take you to the full article, even if the full-text link will not.  (Each article has a unique DOI number - Digital Object Identifier - which can be handy.)

Also handy are "Similar articles," and "Citations" (other papers that cited this article).  Citations won't be that helpful for a just-published article because it is just too new to be cited yet;  but journals and others base quality measures on how often an author/ article/ journal is cited.

Now, why would the article not be available - this is called putting articles behind a paywall?  Well, publishers make money from subscriptions, and while universities and drug companies pay for subscriptions, private citizens usually don't.  But few of us want to pay $35.00 for each article we want to read in detail.  We'll talk about ways to get around this in another blog post.

Besides looking up abstracts, you can email the search results or abstracts to yourself (handy if you are working in more that one place), and even have the system send you Alerts whenever there are new articles that meet your criteria.  This requires you to Log In (see the first image).  Usually, you don't need to log in, but for Alerts you must.  One of the choices for logging in is your Google account, but this was not working when I tried it.

PubMed is added to daily, is indexed, and is free.  It's a tool I use every day.  You can, too.

Biohacking

Biohacking is described many ways (Google it!)  The way I define biohacking is experimenting on myself to make my life with PD as effective as possible, using, in my case, low risk means.

This includes trying out vitamins and other supplements, like melatonin (tried it, but it didn't seem to help.)  It also includes trying out devices like the "red hat" (red and near infrared light), and grounding/earthing sheet to deal with all my extra oxidation.  Sometimes they work; sometimes they don't (if my test results show that I'm low on a vitamin, then I supplement, whether or not it feels better.  However, I've had to cut pills in half to get to a level that my gut likes, since vitamin-makers seem to subscribe to the more-must-be-better school.)

Similar to formal case studies written by physicians about individual patients, sometimes we call this biohacking N=1 studies.  Our responses to PD medications are already quite individual, so what works for one may not work for another.  At the same time, there is not a lot of funding for formal clinical trials for vitamins, supplements, and other treatments that can't be patented.  Not that there are no studies like these, but we have a progressive disease, and often can't wait for somebody to formulate a study, obtain funding, invite participants, conduct the study, and write up the results; just the writing up of results can take 2 or more years, and as I said, meanwhile we are progressing.

Doctors are often not enthusiastic about this self-experimentation, but they have mostly treatments that deal with symptoms, some treatments better than others.  I make sure to let my neuro/MDS knows what I'm taking.  The only "medicine" that has been demonstrated to slow down progression is vigorous exercise (and we still don't know the optimum kind of exercise/duration/frequency.)

My latest biohacking experiment has been with caffeine, which seems to at least provide symptomatic relief.  I've been eating two squares of 70% cacao dark chocolate when I first wake (often around 5 AM);  I don't take my first dose of c/l (carbadopa/levodopa) until 8 AM.  I realized that when I eat the chocolate, I feel great, and my keyboarding is fluent; when I can't eat my chocolate, I'm stiff and my keyboarding is slow.  Caffeine is an important part of chocolate, and has been found to assist in making pwp feel better (and who doesn't like an excuse to eat chocolate?)

I tried expanding this by taking 100 mg caffeine (1/2 a Nodoze caffeine pill) with breakfast, and the same with lunch.  Any caffeine after lunch lasts for a long time, and interferes with sleep - and lousy sleep leaves these other annoying symptoms in the dust, so I do nothing that interferes with sleep.  I started keeping track of finger-tapping on my affected hand, since that's quantifiable.  When I compare before I take the caffeine to after (when I'm "on"), the finger tapping sometimes improves, sometimes not - but I can tell if I'm stiff and keyboarding is easy - not so quantifiable, but works for me. (In other words, forget the finger tapping and go with keyboarding.)

Note: discovered that Nodoze, and most caffeine pills, are not gluten-free (they include corn starch, which is sometimes contaminated with wheat).  The results of accidental gluten ingestion for a person who is gluten-sensitive are unmistakable, unfortunately.  Usually I remember to read all the ingredients, but not this time. So I had to search for GF caffeine pills and pause the caffeine experiment for a few days.

Once I found another caffeine supplement, I was just taking caffeine with lunch.  But the only caffeine that isn't like Nodoze (doesn't have corn starch) is basically concentrated coffee.  After a few days, the supplement gives me what coffee gives me:  um, the runs.  Caffeine in soda or chocolate doesn't cause this, so I know that it's the coffee that's a problem for me.  Rats!  The caffeine did seem to make me less stiff.

But my MDS has me taking an extra dose of c/l (4 half-pills instead of 3, 4 hours apart instead of 5).  So far that's helping.  Fingers crossed.

And I'm still having chocolate when I first get up.  The sacrifices I make for science.

Images: Pixabay

Nicotine experiment goes haywire

There is some research to suggest that nicotine gum increases blood pressure in people with PD.  A recent clinical trial showed that chewing nicotine gum improved low BP for about 90 minutes.  So I thought, given that I have orthostatic hypotension, I would give nicotine gum a shot.

First, I chewed the gum while driving to Rock Steady Boxing, then spit it out when I got there.  Partway through class, though, my BP dropped, and I had to sit.  Okay, so next time chew through class, right?

Wrong.  Yesterday, I started chewing the gum at the start of class.  Felt great for 10 minutes.  Then had to sit down.  Even sitting I felt light-headed.  No way could I get up, even to move my rollator, where I was sitting, out of the way.

I have never felt so washed out.  I even considered phoning my husband to walk me out of class, down the stairs, and take me home; my independence is important to me, so this demonstrates how poorly I felt.  After about 30 minutes, I spit out the gum and slowly started to feel better.  Cognition was subpar throughout, which is not normal either; it improved as my BP improved.

Put one in the "fail" column.  No nicotine gum for me.  There is medication to increase my BP; I haven't wanted to consider it (danger of high BP when lying down), but now I think I have to.

Where to find the latest on Parkinson's research

There are a few really good places to look for the latest on PD research.

For day-to-day updates, along with interesting discussions about research, nothing beats PRIG (Parkinson's Research Interest Group) on Facebook.  I know that some people don't like FB, but it's the best platform for discussion where the conversation focuses on research topics, people know how to use it, and it's searchable.  Unlike the many FB PD support groups, this focuses on facts.  I have not found a more reliable, consistent source of information about PD research (and I read a LOT of online sources for PD information).

PRIG is tightly moderated, so there are no ads, no cat videos, no clickbait, and no support group sob stories.  PRIG is also a closed group, so you need to make clear that you aren't looking for a support group (answer the questions, and you're in).  There will be a link for more information for almost every story - sometimes more than one. I heartily recommend it.

For current information about active clinical trials see http://www.pdtrialtracker.info/. 

This is curated and updated by Sue Buff and Gary Rafaloff and provides a current picture on drug trials in particular.  Fair warning:  there is a great deal of information here that can really suck you in. 

In the Interventional tab for PDTrialTracker, (http://www.pdtrialtracker.info/interventional-trials-1.html)  scroll down to see Clinical Trials by Therapy Focus.

Finally, want to find a Clinical Trial that is in your area so that you can participate?  Then click on Recruiting Trials and scroll down to "Find Recruiting PD Trials in your Area."

The Science of Parkinson's blog/website, run by Dr. Simon Stott, takes deep dives into individual research topics, while defining all those terms (which you can skip over once you understand them).  Outstanding job of explaining why something might be important, along with what researchers found (and what related studies have found), and even what related research is being conducted now.  This blog is searchable, too.  And has a monthly research roundup.  I do not know how he has time to read everything, write extensively, and work full-time, too. This is a tremendous service to the PD community.

For more information about specific research papers, see Pubmed.  For more info about how to use Pubmed, see https://parkiesupport.blogspot.com/2017/12/research-news-about-pd.html.

For more information about specific clinical trials, see ClinicalTrials.gov.  For more info about how to use this website, see https://parkiesupport.blogspot.com/2019/02/using-clinicaltrialsgov.html.

I've written in the past about e-newsletters you can subscribe to, and I still do subscribe, but now I tend to go to PRIG, which cuts through the hype (example: this is a study in rats, not people; and a lot more investigation is required to find out if it's a useful treatment) and often provides links to related research.

There is a lot of work being done; it's certainly worth knowing what's being worked on, and why.

Getting the dose right

Although there aren't a lot of drugs that treat the symptoms of Parkinson's, there's enormous variability in how much is needed - and even if side effects can get in the way of using a medication.

The "gold standard" drug is levodopa, often teamed with carbidopa to reduce nausea and increase levodopa effectiveness.  But there's no "standard dose."  Newly diagnosed pwp will often ask, "Is this too much/too little?"  But the answer is different for everyone.

I started taking C/L (carbidopa/levodopa) about a year ago, just half a pill, three times a day.  It improves my stiffness so that it's easier to exercise, and seems to make executive functioning (multitasking like driving) a bit easier.  If I forget to take a dose, or if I take it with a handful of peanuts (protein that interferes with medication absorption), I get reminded just how stiff I can be!

I've played around with the timing that I take a dose, just because right after I take a dose, there isn't much dopamine in my system - so that's not a great time to start a physical therapy session or an exercise class.  I'm "off."

Recently, my MDS wanted to bump up my dose but without the nausea and sleepiness that often go along with that.  So I started Rytary, a controlled-release version of C/L.  I seemed to go "on" more quickly, and the nausea (right after dosing) and sleepiness (90 minutes after dosing) went away.  At roughly double the previous dose of levodopa, I was less stiff, more cheerful, and had improved small motor function (easier to type!).  Initially, the executive functioning needed for driving seemed a bit easier.

But one of the "gifts" of C/L is that it can lower blood pressure.  And higher doses can lower it more.  And I had to start sitting down more and more, even to exercise.   As soon as I broke a sweat, I felt faint - not good.  Clearly, my blood pressure was a problem.  I've already got low blood pressure, and now orthostatic hypotension, too (blood pressure drops when  I stand up, making me more likely to faint).  Movies make fainting look romantic - it's not.  Your body wants your head at ground level so your brain gets enough oxygen, and it makes that happen by treating you like a marionette whose strings are cut; your arms and legs go at all angles as you are suddenly on the floor.  You can hit your head.  Not fun.

Something had to give, and constant hydrating, extra salt, compression thigh highs were not enough.  So I switched back to the lower dose C/L.  The result?  My blood pressure is better.  Unfortunately, I'm also stiffer and more awkward, and typing is tough again.

But my mind is sharper and clearer.  Forgetting a dose here and there didn't clear out my system enough.  But a few days at the lower dose show me that my brain is clearer.  Now I know what brain fog is, now that I don't have it any more.

What do I do going forward, as my symptoms get worse, and I need more C/L?  That's a question for my MDS, for another day.

Images from Pixabay. 

Choosing a rollator

What the heck is a rollator again?  Think 4 wheels, a seat, and brakes.

For many years there was the walker (see pic below), which is what we often think of when we think of the elderly infirm (my God, that's not me, is it?)  Sometimes called a walking frame, it has an aluminium frame, and you have to lift it if you want to move it.  Often, it has tennis balls on its base, and occasionally it will have two wheels.  I'm sure it had its place, but there are no brakes, and no seat.  Why one would want a device that one has to lift is mystifying.  Sometimes people have a tray, so they can carry food or drink.  These are light in weight, but are considered particularly bad for Parkinson's because the need to lift it makes it particularly unstable.

Unlike the walker, there are a huge number of different rollators.  The Europeans have several made by Trionic (priced$1,300 + new) that are for active hikers, with really large wheels - a related model is for golf while another is for hunting; this isn't cheap, but it seems very sturdy; one of my fellow boxers has a used one.  It's large.

One can even get 3-wheeled rollators, which take up less space, but these are less stable and also don't have a seat - and when you need to sit, you often need to sit right now.  (For safety, one should lock the brakes, then sit, and only on flat ground.)

There's also a rollator especially for pwp, called the U-step (pic below).  It has a very low center of gravity, seemingly from weight in its base, which makes it particularly stable.  Unlike almost all other rollators, it has reverse-braking; other rollators you squeeze the brakes to slow yourself.  With the U-step, you squeeze the brakes to go; I would imagine this would be very helpful for someone with dementia, as it would be harder to fall from confusion.  I had the chance to try it - very sturdy and easy to turn.  And not cheap.  There are two European reverse-brake models (Gemino 30 Parkinson's, and the Topro Troja Neuro) which are otherwise much like any other rollator, but since they have a higher center of gravity, cost at least as much as the U-step, and have to be shipped from Europe for an additional fee, I wonder if the really high price tag is worth it.  For now, I'm thinking of the U-step for the future; they say you can use it outdoors, but with its small wheels? The U-step 2 can be folded for travel, but it's so heavy - 20+ pounds - that this may be better managed by a caregiver or spouse, not the pwp. New, this costs about $500.

My physical therapist had several different different rollators to try out, which was very helpful.  Sometimes Medicare will pay for this, but the rules vary, depending on if you have Medicare or a Medicare Advantage plan.  My plan only pays for a device once every 5 years, from my reading of it.  I am likely to need a wheelchair within 5 years, which is much pricier, so I'd rather save the insurance for the higher ticket item, rather than something I can get from Amazon or Walmart online.

There is a used medical equipment charity a few towns away, where I was able to obtain an almost-free used rollator which my handy husband has refurbished.  It barely folds, though, so isn't great for my independence - how can I get it in the car? I used this camping, and found that it's okay on pavement or dirt, but not on gravel; good to know its limits. 

I've been looking at new rollators for a year, carefully reading the reviews, so had a good idea of which one I wanted when I actually purchased one - it has good customer service, has a comfortable seat and backrest, has room for my walking feet so I don't have to walk leaning forward, folds up, stays upright when folded (because that's easier to manage), and is relatively light.  I have to practice putting it in and out of the car myself, and my recent fall has rather battered my confidence - so I'm going to have to work on this.  It's got better brakes than the used one, though, and takes up far less space when folded, so if fits several places inside the car.

Using it?  It's a bit like a small grocery cart, but is much easier to turn.  And gives me brakes for inclines (not available on grocery carts).  People are very helpful with doors, which is good, as very few buildings have doors that open at the push of a button.  Still getting used to it, but I feel much more secure - don't feel like I'm taking a risk with every step.

Images Pixabay and Amazon.

Dealing with less - less mobility, less independence

I'm chafing.  I fell about two weeks ago, ending up briefly in the ER.  No permanent physical damage, but my confidence is shot.

I can't pretend that the cane is okay any more; probably I was deluding myself.  Yeah, if I could be assured that I would always pay 100% attention, 100% of the time.  Yeah, right.

Fortunately, I have a used rollator that works okay, (and I know how to use it) though it doesn't fold, so isn't great for going anywhere in the car.  I also purchased a new rollator, which does fold, but it weighs a bit more, and I find that I'm so worried about falling when I take out/put back the rollator that I want to hold onto the car with one hand, which really means I don't have both hands free to lift the rollator into the back seat or the trunk.  Which means that I effectively can't drive - independence, I hardly knew ye.  Overnight.  Not ready to stop driving yet.

But I'm walking so tentatively now.  The fall was caused by momentary inattention, not symptom progression.  But I hold onto everything when outside, especially my husband.  And this is made harder by having my left hand in a splint.  But today I took a shower unaided, and got out of the shower unaided  (yahoo!)  Big step forwards.

I've done all the balance challenge exercises that my PT used to challenge me - and I can do them.  Except for the instability pads/stepping stones - so I'm buying those.  It's not my ability.  It's my confidence that s**ks.

I haven't been driving - partly because of the splint, and partly because I know I need the rollator (and even if I could use the cane, I use the cane in my left hand, the hand with the splint).  This has meant an overnight loss of independence which has made me grumpy.  My husband is happy to drive me, but I'm not ready to be that dependent overnight.  This means I need to practice putting the rollator in the car and taking it out.  I know I can do this mentally, but my body isn't quite sure yet. 

Update:  starting to put rollator into back seat, then take it out again.  Yay!  Even drove a little.  Baby steps, but steps!

Online PD Events

Besides many worthwhile resources online, there are also many live events (or recently recorded events) where you can learn about new research, find out about treatments for non-motor symptoms, and much more.

Davis Phinney Foundation (of Every Victory Counts fame) hosts Victory Summits, live events scattered around the US and Canada. You can, of course, attend a Victory Summit live, but you can also watch the main speakers online as it happens.  There is no recording, and when the live event splits up into groups, about half-way through the day, they stop broadcasting.  But you can learn a lot.  See their website for more information.

Davis Phinney Foundations also hosts webinars.  For recordings of past webinars, and to register for new webinars see their webinars.

PMD Alliance (Parkinson Movement Disorder) provides many online webinars, including Lunch with Docs.  They don't seem to have recordings, but you can listen to/watch the webinars and ask questions.  (PMD Alliance is working on creating a listing of support groups for every state in the US!  What they have right now is here.)

The Parkinson's Foundation has both upcoming webinars to register for, and recordings of past webinars.

The Michael J. Fox Foundation also has upcoming webinars and recordings.

APDA (American PD Association has recordings of webinars here (they may also include information about forthcoming webinars).  Unlike other listings, these aren't dated, so you can't determine how old the material might be.

There is also Parkinson's TV on Youtube, with many programs already to watch. 

Though you can't ask questions on the TV, you often can at the webinars.  They can't give you medical advice, of course, but they can tell you what the research and typical clinical practice are.

I fell again, darn it!

It only took a moment of inattention.  I was walking into the parking lot, thinking about where I was going next, not paying attention to the slightly thicker asphalt, and boom!  Over I went as my foot drag caught me up.  I use a cane but it's not enough any more to deal with imbalance, clearly.

Since I grazed my temple there was a lot of blood, and my wrist also had a laceration.  No unconsciousness and no headache, but blood, and there I was on the ground.  No way I'm going to get up and drive home.

A kind person called 911 and the ambulance came quickly.  They dealt with the bleeding and loaded me up for my first (and I hope last) ambulance ride.  The lovely EMT took a picture of my medication list (always with me) and we chatted all the way to the ER.  Kudos to Essex Ambulance!

In the ER they moved me onto a gurney and asked me the same questions that the EMT asked - name, birthday, am I taking any blood thinners, address, oh, and am I taking any blood-thinners?  They made a copy of my medication list (which includes all my doctors); very handy to have this as I couldn't think of any of them.  Eventually, they called my husband who, of course, thought that it's a telemarketer, and didn't answer, so I left a voice mail.  After a bit longer, I got my cell phone and called him direct.  They took an x-ray of my wrist - hairline fracture, so I now have a splint.  Instead of a suture, they used glue to close the laceration on my temple.  After 3 hours, mostly waiting while they cared for others with more serious injuries, I got to go home.  Kudos, ER!

Now, overdue, we are looking at rollators (4 wheels, brakes, and a seat).  I already have a used one I got for almost free, but it's heavy, and won't even fit in the trunk of my car.  Also, and this is more important, its brakes are not great, so that even when the brakes are locked, when I sit on it, the rollator moves - not good.  But it feels way better than the cane, much more stable.  My husband is worried I will fall again.  Me, too.  Usually the cane is in my left hand, but that has a splint on it.  Mostly, I have been holding my husband's arm when we're not home.

Five days later I have a shiner that is dimming, a splint, and an appointment with an orthopedist.  I've been to Rock Steady Boxing, where I was extra careful of my balance, and punched one-handed.  "You should see the other guy," we joked.

I want to get back to driving, but one-handed is just plain foolish, so I will wait. 

Images Pixabay.

Travel?

Recently we took a car trip that required 2 days of driving each way.  (Why did we drive?  We have a dog who is part of our family.)

What did we learn?

One of our daughters drove one way with us and helped with the driving.  I no longer do highway driving, which puts the burden on my husband - it takes WAY too much executive functioning/multi-tasking/keeping track of many critical things at the same time.  I could have managed the quiet back roads early in the morning

• We will start early and get off the road before the afternoon rush hour.

The dog sleeps a lot, but I can't safely walk him because he pulls, which puts extra stress on my husband.  The dog is finding the trips wearing, as he gets older.

• Since the dog is elderly, and gets worn out by long trips, we aren't scheduling any more driving trips in the near future.

I used my phone to schedule medications, and didn't miss a single dose, but exercise was much harder.  I remembered to do my physical therapy and Qigong, but forgot the cardio, as well as swallowing/voice exercises.  A vacation visit is so shapeless, delightedly so, but that means the usual cues are missing.

• I need to use my phone to schedule exercise so I remember to do it, the way I schedule medications..  There is also seated cardio that I can do in the car (lots of Youtube videos)

I wore a diaper just in case I didn't quite make it to the bathrooms on time - since when I gotta go, I gotta go right now, and pads might not be quite enough.  As it happens, I didn't need it, but I was glad to have it.

• I'm going to continue to using the diapers.  Amazingly, these fit fine under my clothes.

We plan exactly what to bring,  complete with a spreadsheet for planning.  This has meant less lugging stuff into the motel room for my husband, but it did take thought, conversation, and trial-and-error.

• We try to talk about what's working - and not - throughout the trip.

Travelling - and sitting - encourages, um, constipation.  We both get really tired (even though I'm just sitting). 

• Build in time to use the bathroom.  Less Rush! Rush!

We thought about how flying might bring different issues.  For example, it's easy to throw my bed rail in the car, but it's unwieldy for a plane (but it helps me get into and out of bed, as well as keeping me from falling out).  Questions on a support forum resulted in many helpful responses including:

• Portable bedrail, check it, send it ahead to the hotel, and the TSA's information about getting through security checkpoints while disabled.  The community rises to the occasion again.

Long trips may not be for us any more, but there are ways to make them more bearable.

Images from Pixabay and Amazon.

Travel and urinary urgency

Every day brings challenges, but travel brings on a whole host of extras, some of them not what you'd expect.

Going to the bathroom becomes tougher, because...  where is the next bathroom, and will I have enough time to get to it?  Urinary urgency, anyone?

We stopped at a state "rest stop," once. The bathroom was across the entrance road, up a winding path,  up an elevator (!), across a lobby, and then the question - will somebody already be in the handicapped stall?  Got into the stall and figured out how to lock the door.  Got the clothes out of the way and sat.

Not enough time, no.

I wear a pad, but I wonder if that will be enough this time.  Time for a diaper?  They don't call it that, of course; they call it "adult underwear."

Then the other question: Will it hold enough?

Avoiding water is not an option.  I need to hydrate because my blood pressure is already low.

And if I fill the adult underwear with, um, pee, what then?  How does one get out of it?  And how does one discretely carry a "spare?"

I think it's time to hit the forums.  I'm not the first to deal with this, and the community will have experience.  Somebody has already had to cope with this.  Bless the community, its collective experience, its generosity to share, and its sense of humor.

Image from Walmart.com.

Update on Red Hat - Near Infrared and Red Light

I've been using a "red hat" since mid-April, 2019, so roughly two months.  (See article with rationale - it's based on science.)   As it gets warm with the warmer weather, my lovely husband added a computer fan.  I have been wearing it twice a day for 20 minutes.

Hasn't seemed to do anything, except that my balance didn't seem to get any worse; up until now, my balance has consistently, relentlessly gotten slowly worse.  Then I wasn't able to wear my hat for a few days because it was getting hot, and my balance started to get worse again.

My lovely husband added a small laptop fan to the top of my "hat," which improves ventilation. I'm wearing my "red hat" religiously once again, and hoping that my balance doesn't worsen again.  Is this scientific?  I have not known what, if anything would improve, or at least not deteriorate further, so I've just continued to go about my life, and periodically check myself for symptoms.  My expectations have been low, which has been useful to avoid the placebo effect, something that works particularly well with pwp.  Having my balance stable would be delightful, since this is by far my worst and scariest symptom, so I'm crossing my fingers.  Back to just using the hat and waiting to see.

For more about the "red hat", including how to make your own, see:

Red lights on the brain blog.

Well Photobiomodulation website

Image from https://redlightsonthebrain.blog/diy-transcranial-light-hat-eliza/.

How to find local support, exercise, speech therapists, physical therapists, and clinical trials

Here is where doctors, patients, and care partners can find local resources easily and quickly:

To find a local PD support group, use Google.  Enter support Parkinson's your-state-name (or your city name)  You can also try at PMD Alliance, which is working to build a US-wide list: https://www.pmdalliance.org/resources/support-groups/)

To find local exercise PD .exercise groups, use Google.  Enter  exercise Parkinson's your-state-name.

If you live in Connecticut, information about support and exercise has already been compiled.

To find local physical therapists who have experience working with PD, click on the APTA website and enter first your zipcode, and then select Neurological.

To find local speech therapists who have experience working with PD, you can select people based on the program they have been trained in:

• LSVT Loud
• Parkinson's Voice Project

Finally, if you would like to find Clinical Trials in your local area, use the Clinical Trials website.  

This is the basic search screen.

Here's an example of adding PD, "recruiting", your location, and how far you'd be willing to travel.

 (For more information, read this short article.)
Magnifying glass image from Pixabay.

What happens at a clinical trial screening?

I've found a whole group of webinars about clinical trials that I have found both interesting and informative.  Presenters often include professionals who help run trials.This latest addresses what happens during a clinical trial screening - this is where the researchers find out if you meet their needs, and you find out more details so you can decide whether to commit to the trial.

The presenters point out that the screening often takes place in two phases - preliminary (often done by telephone), and in person.  The preliminary phase lets both you - the person who might want to be in the clinical trial - and the researcher, get to know whether you would be a good "fit" for the study, and whether you want to commit to the requirements (go to x place on these dates, provide samples for lab testing and/or diagnostic tests like MRI, and so on).  Remember that participation is voluntary, so you decide if you're committed, even if they want you.  (No recourse if they don't want you, though.)

I've been through this preliminary phase a number of times; it's here that you find out what are the basic patient characteristics the researchers are looking for - and what they want to avoid. (It's also usually in the written description in ClinicalTrials.gov.)  It's also a great time to find out how often you'd have to go to their location (am I willing to drive to another state once a month for six months, for example?)  This sure beats travelling to a laboratory or office or clinic, only to find that this particular trial doesn't work with my schedule, or I don't quite fit their needs.  (The middle of the video talks about typical tests for an asthma clinical trial, so you may want to skip that part.)

For example, I participated in a study that looked at telemedicine as a way to diagnose a condition; in that study, a medical student answered my questions and asked a series of his own questions.  Then the principal investigator phoned with more detailed questions.  When we both agreed I would be useful in the study, I "signed" consent forms online.  The actual study was done via the internet using software similar to Skype on our computers.

Later, I had the chance to be in a drug trial; a professional associated with the study phoned me in response to my email asking for more information.  I met the basic screening criteria, but the time and energy commitment would have been substantial; I would have had to get somebody to drive me 3 hours round trip, not once or twice, but monthly for a year, so that they could do lab tests and observe my progress, if any.  I decided that it was too much driving over too long a period; she did not pressure me in any way.  Participation is my choice, always.

I found other useful webinars about clinical trials on Antidote's website, as well, which reflect Antidote's desire to educate patients as they recruit them for trials.    Antidote provides a searchable database of trials (presumably based on clinicaltrial.gov) for patients, and, for researchers, "accelerates your [researcher] clinical trials through best-in-class digital recruitment and patient engagement." You might want to take a look.

How I evaluate a research abstract/report - Did researchers do a good job?

Earlier, I explained the basics of reading a research abstract.  But I'm not a scientist, and many of the statistics are over my head.  Despite that, there are still intelligent questions I can ask to determine if research results are valid.  For example:

How many people were studied?  In a Phase 1 trial, focused on safety, the number will often be very small, especially with a technique not previously tried on humans.  (Remember, Phase 1 - safety, Phase 2 - effectiveness/does it work + safety (still with a relatively small group), Phase 3 - efficacy and possibly also dose + safety, Phase 4 - continuing evaluation after FDA approval.)

But not all research is a clinical trial that fits into one of the Phases; sometimes scientists are just observing, as was the case in the sample research abstract about an exercise survey used in an earlier blog post.  Or the research is on cells or on animals.  Or the research paper is a review of current research on a particular topic, or even a meta-study, where data from multiple earlier studies is evaluated in fresh ways. This means the format may not be the same as the description in the earlier blog post.

But getting back to the number of people studied, the results are more meaningful if the number of research subjects was 200, not 20 or 2.

Another related question is: did the researchers use flawed data?  In a recent study, just using medical records, the records used were for people diagnosed with PD or with a parkinsonism - and who had an EEG in their record.  Since most people with PD don't have EEGs done related to their care, few records included an EEG; this resulted in only 19 PD patients being part of the study; considering the diversity of pwp, drawing conclusions comparing only 19 PD patients with those with MSA (multiple system atrophy) and other parkinsonisms is clearly a problem.  And it wasn't mentioned by these researchers.

I don't have the advanced statistical skills to evaluate statistics, but I have learned a few things:
For example, p < 0.05 means this is a meaningful number, not just the result of chance.  (P here means probability.)

There are lots of common sense questions to ask, such as:

• Is the age of research subjects appropriate?  (In one seriously flawed paper, subjects ranged from ages 20 to 78.)
• Are subjects taking other medications?  (In the previous example, the researchers were evaluating an herbal supplement, and included subjects who were also taking other unspecified herbal supplements at the same time.)
• Is their basic math accurate?  (In the previous example the number of subjects was different in different parts of the paper, with no explanation).
• Was this research in humans, cells, rats/mice?  What happens in mice and even in petri dishes doesn't always follow once it's moved to humans; in fact, studies in mice of potential drugs have not translated well at all.
• Do the researchers have a monetary interest that may bias them?  Did the company/foundation funding the research restrict publication of results?  (Who is funding the study?  This information is often at the end of the full paper.  Researchers are now required to identify conflicts of interest (at the end of the full paper), but this information may not be as obvious in earlier research, so you may need to evaluate it yourself (in the example above, some of the researchers are company owners).
• Is the mix of genders reasonable?  (A paper from Iran had only male subjects, possibly for cultural reasons, but this arbitrary exclusion calls the results into question.)
• Have researchers excluded too many people, or not enough?
• What kinds of side effects were experienced? 
• Do researchers have a control group, a group they can compare the experimental group against?  A related question:  Have they found a way to identify the placebo effect?  Do researchers know who is taking the trial drug, for example; their observations can be colored by their expectations.  Does the study find a way around this?
• Did researchers ask the right questions?
• Finally, have the results been replicated (in the case of new research, especially)?  If  the results can't be repeated by different researchers, the original study's result can be questioned. 

No easy answer to this one:  Have researchers made assumptions about pwp that get in the way?

There are probably other questions you can think of, too.  These sorts of questions arm you when reading research papers, and even those press reports that trumpet "cure for PD found."

How I read a research abstract/report

Sometimes research reports are really full of jargon and hard to read.  But I've found some tricks that help me understand them better. (Evaluating them will be in a separate blog post.)

I spend a lot of time on Pubmed.gov, because most research is available there.  (Google Scholar includes little of the research, so I avoid it.) What's available here are abstracts (summaries) of research, and sometimes links to the full articles.

Here's an example of a recent abstract that has been marked to help you identify useful information:

Here are a few things that I do:

Read the Conclusion first (not all abstracts contain these helpful headers, but at least the conclusion will be at the end).  This tells us that:  "More patients who participated in group exercise reported symptomatic improvement compared to those who exercised strictly alone..."  Hm, so pwp are doing better in group exercise.

If I want to know more, I move up to Results.  This tells me some statistics (which I understand some of the time), and more details than the Conclusion. For instance, 97% of those who exercised improved their symptoms.

How was the study done?  How many were involved?  For this, I move up to Method / Methods.  This tells me and number of patients or healthy people were studied, and what action was taken; in this case, it was a survey.

Background will tell briefly about the reasoning or earlier research that lead to this study.

Up at the top are the title and the authors; if I want to know more about who did the research, I can click on + Author Information (in Pubmed, not in the illustration).  At the top is also the journal name and the publication date; often there is an Epub date, date published online, that may be earlier than the "official" publication date. This tells me how recently the work was done.

Often this is enough, but sometimes I want to know more.  For instance, how old were the subjects, or what mix of genders.  Maybe I want to know more about the methodology that was used.  In that case, I need to read the full paper; sometimes I can reach it, either by clicking on Full Text Links (upper right) or on the DOI number (lower left).  Since I've had better luck with the DOI number (Digital Object Identifier), if the Full Text Link doesn't say "Free,"  I click on DOI.  Sometimes all that I can find there is the abstract, but sometimes, with some publishers, there is more.  Some publishers include Highlights, the essential findings, which can be more useful than the abstract for telling about key findings:

Sometimes I can see the full paper, as in this case;  the abstract is at the beginning of the paper, and then the full paper follows.

If I want more, the Discussion section of the full paper often has some of the most interesting material; it's here that researchers often compare their findings to those of different researchers, or reflect on what their results mean.

Sometimes the full paper is behind a Paywall; that means I need to be a subscriber to the journal or a medical/scientific database of these articles, or be willing to pay around $35 to read the paper - which I'm not.  If you think you'll routinely want to read whole papers, cultivate a friend or family member who has access to these articles for their work, perhaps somebody in the scientific or medical field.

I'll be explaining how to evaluate a paper in a future blog post.  For now, post a comment if you have a question, so that I can reply.

The legal side of PD

I like to live in the now, avoiding fretting about the future and idealizing the past.  But I do need to make plans.

What medical care do I want (or not want) if I'm terminal, seriously ill, or in a coma?  (Here's where you want a Living Will/Advanced Directive - I found Five Wishes to be particularly good for helping me think through what I would like, and it's legal throughout the US.)

What if I become unable to direct my medical care?  My mom, who had PD, developed dementia.  That's just one of many scenarios.  (Here's where you need to name a Health Care Representative.  In some states, that's part of the Living Will.)

What if I can't direct my financial affairs?  (Here's where you need a Power of Attorney, to give somebody that you've chosen the authority to manage your financial affairs.)

How can I make handing over my assets easier on my family?  Having  a will means that I can control where my money goes.  Avoiding probate is primarily for avoiding all the time it takes.  Wouldn't it be great that my family could put the house on the market immediately, for example, and not have to wait a year?   (Here's where you need a Will, and maybe a Living Trust)

What about brain or other organ donation?   (You can arrange for brain donation - for research - in advance, and can often include other organ donations on your driver's license)

What kind of memorial service/funeral do you want?  If you want your ashes scattered, where?  (Five Wishes addresses this, and you can also arrange for and pay for everything in advance.)

What are your userids and passwords so that 1) someone can take over your financial affairs when necessary, and 2) so somebody can close your social media accounts if you can't be on them any more? (This means maintaining a list, and letting key people know where it is.)

Recently, my husband and I sat down with a competent estate-planning/elder law attorney to talk about what we needed.  It cost us a chunk of change, but 1) now my affairs are set up the way I want them to be, and 2) it is a huge relief.  Our wishes have been made clear.  Our kids have a knowledgeable firm to go to for help if they need it.  In addition, our assets are available to us now, but can easily pass to our kids when we are both gone.

This is not trivial.  My condition means that I can fall and hit my head, develop dementia, have delusions,  or become unable to communicate my wishes.  I want my wishes to be respected, so I need to 1) decide what they are, and 2) identify who can respect them, and 3) give them the authority to act.

I recommend this book, Estate Planning for People with a Chronic Condition or Disability.  But this isn't enough:  surfing the web for "free" tools, especially when the law varies from state to state, is not the ideal approach. Finding the right attorney is much better, in my opinion; start asking around.

Images from Pixaby, Five Wishes, Amazon.

Donating your brain for research

Since there's a narrow window after you die to donate your brain, this is something you (or your family) will ideally do in advance.  Um.  Why would you want to?

Well, to assist research into PD and related conditions.  And so your family (and your doctor) will know what your actual diagnosis is (nobody knows for sure until they look at your brain microscopically, and that can't be done while you're alive).  I won't be able to benefit from this, but others with PD will, and my family is likely to benefit as well.

Here is a great Ted Talk that explains more:

The Brain Donor Project was set up to encourage brain donation in association with the US National Institute of Health's https://neurobiobank.nih.gov/.  If you asked the NeuroBiobank about brain donation, they will refer you to the Brain Donor Project (which is run by volunteers, so please be patient).

So here's how you do it.  https://braindonorproject.org/   I filled out the contact form and they referred me to the Brain Bank at Harvard, which is just a few hours away from where I live.  This is important because the brain needs to be donated and preserved within less than 24 hours of death; each individual bank has their own requirements and some have a much smaller window of time when they will accept donation.

I went on the Brain Bank's website, found their form, indicated my diagnosis on the form, along with my intent to donate my brain.  Looking at their website, they commit to determining correct diagnosis (which I want for my family), and preserve the brain so that it can be used by hundreds of researchers.  This form just indicates my intent (and gave me their 24 hour phone number.)  Each brain bank will be a bit different. When my disease gets more advanced, I (or my Health Care Representative) will contact them to make more specific arrangements.

This gets a bit grizzly, now, so skip this paragraph if you're squeamish.  Ideally, when you are close to death, your family/hospice workers/etc. notifies the brain bank.  When you actually die, the brain bank needs to be notified immediately (that's why the 24 hour phone) so they can swing into action:  notify the neuropathologist who will collect the brain at the hospital or funeral home, notify the hospital/funeral home of need to remove brain, have the neuropathologist collect the brain and send it pronto to the brain bank, where the brain bank preserves the brain and begins work on diagnosis.  Clearly, there are legal forms needed, which is why doing this ahead of time - if possible - is so important.

Here are some Frequently Asked Questions:  https://braindonorproject.org/faq/  For instance, yes, you can still have an open casket if you'd like one.  No, your driver's license organ donor form is not enough (that's for a different kind of organ donation.)  No, this does not substitute for a funeral/memorial service/cremation/burial for a loved one.

This is part of my preparing-for-the-future.  Long-term, I hope to be part of the solution.