Monday, September 9, 2019

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.

Tuesday, September 3, 2019

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  and click on Neuroprotective Trials.  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.

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

For more information about specific clinical trials, see  For more info about how to use this website, see

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.

Monday, August 19, 2019

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. 

Monday, August 12, 2019

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.

Monday, August 5, 2019

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!

Monday, July 29, 2019

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.

Monday, July 22, 2019

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.

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...