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.