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!