Monday, September 24, 2018

Strategies when balance becomes worse

I had to start taking my cane to Rock Steady and I hate doing it.  No choice, really.  My balance, when I walk, is getting worse.  I do a lot of exercise so that my core is strong, so that I can catch myself - which I do.  All.  The.  Time. 

In the house there are walls and doorways, but outside...   First I just used my cane when it was crowded - mostly to signal to others to give me a wide berth - or when I was on uneven ground.  Now, I find that a cane isn't enough, and recently when we visited a farmer's market on a grassy field, I needed to hold onto my husband's arm.  Now, I'm using the cane outside all the time, and inside if I'm visiting school.  In stores, I can generally get a shopping cart to lean on, which is easier than the cane.

Then there's walking when we're camping. Walking while camping involves being on uneven ground, even the roads.  The trekking poles are great for this.  I can't carry anything when I'm using the poles, though. 


I no longer use a purse, because even a cross-body purse can throw me off-balance.  I've found a great substitute in the travel vests from Scott.  https://www.scottevest.com/
Of course, in real life it doesn't look as neat as the images Scott uses, but it's convenient and means that I don't need to carry small items in my hands - keys, wallet, phone, papers, sunglasses, water bottle.  The pen keeps falling out of its special holder, but otherwise the vest has worked well.

But back to Rock Steady.  Boxing, hitting the long bag, I'm fine.  But walking across the open spaces has been more and more of a challenge.  The coaches have been great, letting me guide them with what I want, rather than making choices for me.  But I feel much more secure with the cane.  Darn it.  Wish I didn't need it.

Monday, September 10, 2018

Remembering to take your meds

Many of us have medications, plus vitamins, plus supplements to take.  Sometimes they can't be taken together because of interactions.  Sometimes they have to be rather precisely taken or we get thrown "off" - that unpleasant time when we stiffen up, can barely move, have terrible tremors, and such.

I recently started Levodopa - and have learned the hard way what happens when I forget to take my meds.  I am supposed to take them an hour before a meal, or  to wait two hours after the meal.  Before, I never quite got the difference between "on" (when the meds work, bless 'em) and "off" (when the meds don't work any more, darn it).  I stiffen up and lose my ability to write or type without frequent and frustrating errors.  Before I started the meds, I had to just live with it, but life is SOOOO much easier "on."

(And separating Levodopa from meals really is important, since protein vies with Levodopa for the same receptors.  When I first tried Levodopa it didn't work - because I took it with my protein smoothie!)

So taking the meds at the right time is important.  But how the heck do you remember to take them?  I tried using the calendar function on my smartphone, which I can set for the exact time, and has an alarm - and even buzzes on my Apple Watch, handy when I'm not near my phone.

Except the alarm would go off, I'd turn off the alarm then get distracted...  and forget all about the pill.

This happened every. single. day.  So I needed a solution.  I tried several apps.  Dosecast didn't work after the first dose, offering the third dose with no way to access the second dose. Had to remove it from my phone.  Medisafe insisted I needed a password, and that the password must include an upper case letter (among many other requirements); but then wouldn't let me capitalize the letter when logging in, so I could never even try it.  Had to remove that from my phone, too.  (Appleworld problem - not as many apps and not as well reviewed.)

Right now, I'm trying Round Health.  No login unless I want it, easy to enter the meds I want to take, and when.  This has a window of half an hour around each dose - 1/4 hour before dose is due there's a message to the phone; at time does is due - alarm on watch; 5 minutes late - another alarm on watch.  This keeps up until you tell the app you took the pill or 1/4 hour after the pill was due.   You can click on your Apple Watch that you took the pill, or you can click on the phone; either way, it keeps track of when you actually took the pill.  You can also shift everything forward x time just for one day - think of manually shifting all those alarms just because you woke up late; I can really see using this particular feature.  Round Health has other features, but I'm not using them at the moment so not going to talk about them here.

Fingers crossed this is the one.

Images from Pixabay and Twitter.

Monday, September 3, 2018

Keeping track of all your favorite Parkinson's blogs

I have several pwp who publish interesting / funny / insightful blogs.  There are also interesting blogs published by Michael J. Fox Foundation, Davis Phinney Foundation, as well as blogs about other topics that I'm interested in.

You could bookmark them.  But pretty soon, you're awash in bookmarks.  And how often do you want to keep checking back, anyway?

Fortunately, there are News Aggregators to come to your rescue.  I use Feedly (actually, their free version).

You create an account at Feedly.com.  You can read your Feedly feed (like a news feed) on any device, but it's easiest to set up and add feeds on your laptop, not your Smartphone.  It can look like this:

Now, to add blogs that interest you.  Go to the lower left corner of the screen and click on         +ADD CONTENT.  You'll see this:
Copy and paste the URL of the page that interests you (URL= web address, starting with http...)  As soon as you do, Feedly will give you a choice of what's available at the URL, which in this case in the blog called Sitting Comfortably.

As soon as you click on Sitting Comfortably (or whatever you wanted), you'll see the title of the blog, the title of a recent post, and how often it's updated.  Click on Follow.



And then you need to tell Feedly how you'd like this grouped.  You can use groupings you have already used, or click on New Feed and add a new grouping.  Just click on the grouping you want and you are now following that blog.


I just leave a tab on my computer open to Feedly and update by refreshing the page.  If that doesn't work, click over at the left on All

You can set up the feed in a variety of formats, controllable by the top right.  Play around and see which you like.  There is much more, but this will get you started.

For more, Feedly has a tutorial.   For PD blogs you might want to follow, see https://parkiesupport.blogspot.com/2018/04/parkie-blogs-there-are-parkie-blogs.html

Monday, August 27, 2018

Protandim for Parkinson's?

I'm in a Facebook PD group that was discussing Protandim, an herbal supplement.  A woman who sells the supplement quoted from the company website about "research" that showed this supplement is really amazing: According to the company website, " It's also been shown to reduce oxidative stress in humans by 40% in 30 days."  I looked and looked, but the only studies about Protandim that I could find were in test tubes, in mice, or showed that the supplement didn't do anything in humans. (Research on actual humans: Protein synthesis and runners and alcoholics.)

Finally, I found the abstract for the actual study that the company (LifeVantage) is referring to, from 2006.  (Here's the full paper.) There are just a few things wrong with this study. These include:


  • It contains a sales pitch for why the supplement contains these particular herbs and explains that they must be safe because they've been used naturally for a long time.  Since when does a sales pitch belong in a scientific paper?  And safety?  I thought of digitalis, which has been used naturally for centuries, but it would kill many heart patients; "natural" does not mean safe.
  • There's no placebo group in this study, so is the result from Protandim or is it just enthusiasm? There is often a placebo effect so it's wise to see if the supplement has a different effect from the placebo.
  • The people in the study were ages 20 to 78.  Really?
  • Some of the people, though we're not told which ones, are taking other "supplements."  We're not told what supplements they are taking, either.  Could this have influenced any of the results?
  • The text says there are 19 males and 10 females.  Group 1, which got a full dose, had 20 people in it.  Group 2, which got a half dose, had 4 people in it.  Why is it that the researchers don't tell us the mix of ages for each group, which genders were in each group, or how people were chosen for either group?
  • This is the best part: they had data on 29 people and refer to the 29 repeatedly in the text and illustrations.  But group 1 (N=20) + group 2 (N=4) = 24, not 29.  What happened to the other 5?  Their data didn't work out?  The researchers don't say.
  • Out of 5 authors, 2 are associated with the manufacturer of Protandim.  In fact, one is just associated with the manufacturer, not with any research institution.  What is he doing here?
  • One of the authors is also on the editorial board of the journal.  Possible conflict of interest?  Considering that elementary math was overlooked, this article doesn't look like anybody subjected it to even a basic review, never mind a rigorous peer review (which, frankly, should have caught all these issues).



Does all this mean Protandim is bad? No. Not at all.  What it means is that nobody can tell. 

So far, there are no studies of Protandim and Parkinson's, so we don't know if it's safe for pwp, never mind if it's effective.



Image from Pixabay.



Monday, August 20, 2018

Finding a PD physical therapist

I just found out a way to find a physical therapist who knows about Parkinson's in the US.  Thanks to Dr. Ryan Duncan, who presented at the Davis Phinney Victory Summit on 8/10/2018.

Use the website MoveForwardPT.com, from the American Physical Therapy Association.  Select the zip code or city/state.  This will give you a list of all physical therapists in your area, but only some of them will have experience working with PD.  So then from the list of specialties choose Neurological - which includes PD.


For more about why you would want a physical therapist, see: https://parkiesupport.blogspot.com/2018/02/physical-therapy-individualized-help.html

Monday, August 13, 2018

Driving with Parkinson's

It's ugly.  One woman posts on a forum that she can only brake if she pushes her leg against the side of the console between the two front seats; should she be driving, she wonders.  For the sake of other people, and herself, I hope she does not.

We lose capabilities over time with PD - sometimes muscular strength (so we can brake in an emergency), sometimes flexibility (so we can turn around to back up safely, and can move our foot from accelerator to brake).  And then there is my personal favorite, multi-tasking (so we can keep track of everything happening around us, keep the car in our lane, keep track of traffic signals, keep track of cars pulling in...)

If we're smart we recognize that some kinds of driving are too challenging, and don't do them - maybe stop driving at night, or when the traffic is heavy, or on highways.  We all know what has become harder.

Many days, for me, getting in and out is the hardest.  Yes, I've practiced pivoting in a chair, but that doesn't have the d**n door in the way! 

AARP has a Safe Driver Course, available to anyone, but less expensive for members; you can take it in person or online. https://www.aarpdriversafety.org/   Although it's oriented to older folks (and though I sure don't feel old, I am one of those older folks), it also looks at disability and the decision to continue driving.

Here's what they cover:
The AARP Smart Driver online course covers:
  • Research-based safe driving strategies.
  • Information on the effects of medication on driving.
  • Preventive measures to reduce driver distractions.
  • Proper use of safety belts, air bags, anti-lock brakes, and new technology found in cars today.
  • Techniques for handling left turns, right-of-way, and roundabouts.
  • State-specific rules and regulations in 19 key areas, including construction zones, child safety seats, school buses, cellphone use and more.
  • Easy-to-follow format incorporating adult-learning principles.
I recently took the course.  I've taken it before (it changes regularly, so much of the course was new).  I wanted strategies that would help me be a safer driver, which was part of the focus of the course.  I've recently retired, so no longer have to drive in snow or sleet  - that means I can avoid driving in challenging weather - hallelujah!  I already avoid night driving and heavy traffic.  Highway driving is exhausting, so I avoid that, too.  I spend time plotting alternate routes so I can avoid challenges.

My husband does the highway driving for us.  I looked into the local Dial-a-Ride, and I've installed the Uber app on my phone, just in case I need it - not cheap, but neither is an accident.  The AARP course also helped me see how much the car is costing (repairs, gas, insurance, taxes...), which makes the alternatives look less expensive.

Each pwp is different.  Some can drive anywhere, any time.   Some can't.  Some will never have to give up driving, but some of us will. We all need to look at this - all of us.

Image from Pixabay

Monday, July 30, 2018

Technology that encourages exercise

I like to use tools to help me keep track of all that I need to do, and how well I'm doing it, especially when it comes to exercise - because that's medicine. My recent experience is with the Fitbit Alta and with the Apple Watch 1.

I had a Fitbit Alta, which told me to get up once an hour, kept track of my heart rate, and tracked my sleep (different Fitbits provide different features).  After 8 months the sleep tracker stopped working right, and the Fitbit often wouldn't remind me to get up. And it was hard to get the Fitbit to show me the time - ever.  But the watch part still works, so now my husband has it.

There was a deal on an Apple Watch 1, which cost about the same as the Fitbit, so now I'm wearing the Apple Watch, which is paired with my iPhone (also a recent deal when my Samsung phone started failing).  Since the AW only works with an iPhone, I would not have considered the AW before. Gotta say that now that I've figured it out (mostly) the AW has much to recommend it.  Besides the heartrate, the AW does actually bug me to get up - but not if I was active during this hour - so it doesn't bug me when it doesn't need to.  I also can select from a bunch of types of exercise, called Workouts, and use the AW to keep track of what I did with the calories from exercising, time spent exercising, and number of hours I stood up.  Fitbit keeps track of minutes of different kinds of exercise - and sometimes counts the exercise correctly, but often does not.  I really got fed up with the inconsistencies - sometimes it would count 35 minutes on the eliptical as exercise, but other times it would ignore it.

Just like with the Fitbit, on the AW I can set goals - not steps, like on the Fitbit, but movement.  If I wanted to count steps (I don't), there are apps for that.  AW won't let me set goals for time doing exercise, or even for standing every hour. Bafflingly, these are goals to work toward, but I don't set them.  More on this in a bit.

One thing that I really like about the AW is that I don't need to do a little dance just to find out what time it is.  Often the Fitbit wouldn't tell the time no matter how much I tapped on it or turned my wrist - ahem, a watch that doesn't tell time is of limited value.

Both devices have different formats for the watch face, but the AW shows more information on the clock face that you customize - in my case analog time with a second hand, heart rate, weather, date, next appointment on my calendar (though there are many other choices, including workout, world clock, timer, stopwatch and much more).  Also, the AW will alert me when an appointment is approaching - like a Rock Steady Boxing class - so that I remember to go.  I've set up appointments with advance reminders for everything on my phone calender - otherwise I just won't remember.  Every phone I've ever had has had this kind of calendar app, and I need it now more than ever. Having the reminders on the watch is useful because sometimes the phone is in another room and I don't hear it. 

The AW is easier to charge - it charges quickly if you haven't let it become completely drained with a magnet attached to the charger. Easy for when your manual dexterity is suboptimum, which happens when you are a pwp. I had to take the Fitbit off, too, to charge it, but then I had to clamp the charger end onto just the right spot or it would not charge, and a full charge took several hours.  On the other hand, you are not using the Fitbit (at least this version) to input information and choices - that's for the Fitbit app on your phone - which I've found both easier for my awkward PD hands, and easier to understand.  Also, since the Fitbit isn't as smart, you don't need to charge it as often.  The AW needs a charge every day-and-a-half.

This is my first time with the famous Apple-knows-best philosophy.  Some things are set in the AW by the user, some in the iPhone...  and some can't be set at all.   Um, I think I want to be the one to decide the number of minutes that I plan to exercise, not Apple.   Considering the hundreds of people asking the internet how they could change their exercise minutes on the AW, I am not alone. Apple does not know best, and if the Apple interface is so wonderful, why do I need to go to third-party videos and articles to find out how the device works, hmmm?  (End of rant.)

One thing I've found useful is to keep track of all the different exercises I have to do (balance, cardio, strength, finger dexterity, voice, swallowing...) I have started using the Reminders app (comes on the iPhone) to keep track of all the PD exercise that I do - did I do that today?  Oops.  Or, not going to do that today because I already did X.  Very handy - I just check off what I've done and can see what I meant to do, but didn't. The next day I uncheck everything and start again.  This works perfectly on the iPhone, by the way - don't want it on the watch.  I'm sure there is an app like this for an Android phone, just didn't think of it when I had one.

I liked the heartbeat information a bit more on the Fitbit - it was easier to see, and it told me how my resting heartrate compares to other women my age.  On the other hand, the AW shows me how quickly my heartrate returns to normal after a vigorous workout.  I found a free heartrate app that pairs well with the workouts and is way easier to see.

I had to get a separate sleep app for the AW, and it's not as seamless as the Fitbit - the phone needs to be in the room, face down, while I sleep.  I've never had the phone in my bedroom unless I needed to be contacted at night so not wild about this.  Not quite the same information from this sleep app, but more accurate than the Fitbit has been lately.  This brings up another annoying thing about the AW - often it wants the phone to be in your proximity so that the information about a workout will be recorded correctly.  I did 50 minutes of PT that shows as a workout, but never made it to the Activity app - which keeps everything together - because the phone was out in the car during the workout.  The Fitbit just stores information, then when you hold the phone (yes, it has to be that close) the Fitbit sends information to your phone (Android or iPhone). 

In sum? Each has its strengths, but I've found the apps on my phone and watch have helped keep me on the exercise track.


Images from Pixabay

Strategies when balance becomes worse

I had to start taking my cane to Rock Steady and I hate doing it.  No choice, really.  My balance, when I walk, is getting worse.  I do a lo...