[Lyn Richards]

Fakhiuddin, That must be so difficult and worrying for you (and for her doctors). There are some things you could offer your wife if she has trouble drinking. Will she eat soup? jello? smoothies? All of these contain a fair bit of liquid, and may help. Fruit can be helpful, especially fruits like berries, melons, peaches, and apricots, that don’t have as much sugar in them, but also plums, grapes, apples and oranges. And many vegetables have high water content, like lettuce, tomatoes, bok choy, celery, zucchini, bell peppers, asparagus, swiss chard and cucumber especially, but also spinach, eggplant, broccoli, cabbage and mushrooms.
It may be that she has trouble swallowing liquids like water, and is afraid of choking: swallowing liquids often becomes impaired before swallowing food, so things that are thicker (pureed soups, smoothies, gelatin as well as fruits and veg) can be easier and safer ways to consume liquids. Also, very cold drinks can be easier to swallow, and drinks with flavour. I don’t know where you live, but you may be able to consult with a geriatric nurse in your local community health centre who may have more ideas to help you both to cope with this.

[Lyn Richards]

Good for you, Sherman and Toni! I hope that your thoughtful and responsible choices will inspire others. I’ve been lucky so far, diagnosed 9 years ago at 66 but with slow progression, no freezing episodes or sudden sleep attacks, so I feel I can still drive fairly safely — with a few caveats. I have learned to avoid driving when I’m tired dt a few instances where I felt my vigilance or judgment was not optimal, and if I find I’m feeling a bit dozy I pull over right away & either switch drivers or, if alone, just wait until the drowsiness passes. That could take 15 or 20 minutes or more, but it doesn’t matter: safety first!

I don’t usually drive long distances (more than an hour) by myself now, even when I feel I could do it. I ride with friends when I can, walk to nearby shops more often, and have started using public transit occasionally so that when I can no longer drive the bus will be familiar. Like you, Toni, I really like taking the bus. It’s so relaxing to let someone else drive! And the bonus is that car-pooling, walking and using public transit all reduce CO2 emissions 😉

[Lyn Richards]

My first neurologist prescribed Neupro (& Azilect/rasagiline) as his first level treatment. While these didn’t benefit my tremor, they markedly improved my attention and motivation, as Vickie and Gwendoline noted, as well as my mood. I was no longer dressed in black with my hair tied back in a ponytail; instead, I felt cheerful, functional and energetic again, and still do 9 years later. Now when I become fatigued it’s bc I have been doing too much for too long.

The downside I experienced with Neupro was persistent morning nausea during the weeks of gradually increasing the dose to 6mg. Had I not been 15 years past menopause, I’d have thought I was pregnant. What helped most was ginger; my preferred form is ginger tea (grated fresh ginger boiled in water, with lemon & honey). I still have occasional mild morning nausea — relieved by burping.

The only medication I know of that helps tremor is levodopa —Sinemet in Canada, Madopar in the UK — and it’s really effective, but it took a couple of weeks of increasing the dose to have benefit. Missing med doses, skipping regular exercise, lack of sleep, and becoming exhausted or dehydrated (and perhaps missing meals) all seem to increase likelihood/severity of tremor.

In Canada it costs  $270/month, though is covered fully by my private health insurance plan. British Columbia’s Fair Pharmacare covers the cost for individuals with “advanced” PD. I would give up something else to pay for it if it weren’t covered: it’s that good.

 

[Lyn Richards]

There are a few things that work well for me & help manage my life-long absent-mindedness & distractibility. I would forget about taking my med while walking from one room to another, so keeping meds where I use them has been very helpful for managing this issue.

I have a dosette + water at my bedside with the meds I take when I wake up : C/L + rasagiline/Azilect + mirabegron/Myrbetriq (who thinks up these names?!). My rotigotine/Neupro patch + gabapentin are on the bathroom counter to take at bedtime (it’s a large bathroom with a skylight and fan to vent shower steam, so I don’t think humidity is an issue).

I used to keep the daytime C/L doses in a pill timer with an alarm. I carried that with me everywhere, which is important since my life is pretty busy and I’m often away from the house — even with the pandemic. That device had a compartment for the day’s  doses plus a space for the week, and another space for other meds, so it was also great for travel. This worked well until the device died. Right now I just carry the day’s C/L doses in a tiny old aspirin tin that easily fits in my pocket, and re-set my phone alarm when I take a dose. That has been working well.

I used to keep my magnesium (for night-time leg cramps) with the gabapentin in the bathroom dosette until a friend mentioned the interaction between these 2 meds & I also discovered Mg should be taken with food. So now the magnesium goes in an attractive little jar on the dining table to take at supper. I put it where it will be in the way, so it catches my attention.

[Lyn Richards]

Hi Ed, I have a couple of thoughts about that. First, I agree with Daniel that we need the probiotics in yogurt for our gut health — of course that has to be plain yogurt without sugar or fruit stirred in — and we need protein to maintain our muscles for strength and balance as we age, especially with PD.

And I agree with Barry that the major issue with protein and levodopa can be avoided by scheduling. Some research suggests that the protein issue only matters for those with a genetic component to their PD, but I know it affects me & I don’t have any family members with PD.

A dietitian explained at a local conference that with PD we really need to wait at least 2 hours after a meal before taking meds, and longer if the meal has a higher fat and protein content — partly because these are more slowly digested, and partly because (I think she said) fats delay stomach emptying — which is already slow due to the effect of PD on the GI tract! BTW, the amount of protein in Greek yogurt is still minimal compared with any kind of meat — about 10 grams for 100 grams of yogurt compared with 22-26 grams for the same amount of fish or meat.

The same dietitian explained that there is a problem with regular dairy products and PD, but A2 dairy products made with milk from Jersey cows are okay. Here in the southern interior of British Columbia I’ve found sources for yogurt and cheese made from Jersey cow milk as well as A2 milk. I have to go to another town for the yogurt & cheese, but I think it’s worth it.

[Lyn Richards]

During my practice as a psychologist, I worked with many people with diminished cognitive reserve due to acquired brain injury from workplace or motor vehicle accidents. I noticed that whenever my clients had a viral infection — even a cold — they described worse cognitive problems: poorer memory, slower thinking; more trouble organizing themselves. This was scary for them, feeling they were losing the gains they had made in recovery. It was helpful for them to know that there was a reason for it, and that it was temporary. Parkinson’s is a different kind of  injury to the brain, but has the same effect of reducing the “reserves” that we need to cope with increased demands, so I think we can expect our symptoms to worsen when we have an infection — and know that we are not just on a downhill slide!

I also noticed that my clients’ myofascial/muscle pain from soft tissue injuries or whiplash became worse after infections — especially a severe virus or pneumonia that caused weakness. (I won’t into details about how this works!)  I notice that my own problems with myofascial pain (related to an old whiplash injury) are worse since being diagnosed with Parkinson’s. This leads me to think that increased muscle pain and stiffness may be something we need to watch for after we have a serious infection like Covid. Stretching and trying to avoid staying in one position for too long when we’re ill may help prevent this.  A sudden increase in PD symptoms might even be a sign that we are developing an infection.

Although these are “anecdotal” observations from my practice, there is research to that supports and explains the underlying mechanisms.

[Lyn Richards]

Hi Beth,

There are many people who need to start medications at a lower dose than is usually recommended, and also to increase their dosage more slowly in order to avoid adverse effects. I found that many of my clients were able to tolerate medications that had previously caused a lot of problems at the usual starting dose.

On-line pharma sites indicate that it  is okay to break  levocarbidopa tablets in half (the tablets are scored). Talk with your neurologist about starting at just 1/2 tablet a day and increasing your dose very gradually, decreasing if you have problems and waiting before trying another increase.

I take gabapentin (100-200mg) at bed-time to help my sleep. It was prescribed for restless leg syndrome, which hasn’t troubled me much, but I found it helpful for improving my sleep. When I have a really bad night I take 2.5-3.5mg of zopiclone and that knocks me out. I used zopiclone fairly often for several years before I was diagnosed with PD, and never had any problem with needing an increased dose or quitting it when my work/stress load decreased.  The most important thing for good quality sleep is vigorous physical exercise. This increases the percentage of slow wave sleep — which allows the body to restore itself. Vigorous physical exercise is also the only known way to slow the progression of PD.

Hope that’s helpful!

Lyn

 

[Lyn Richards]

Hi Roseanne,

I have a few thoughts about your muscle spasms. I was having more muscle cramps and spasms before I started taking magnesium (150mg of magnesium citrate at bedtime). Some people also take calcium supplements. You could also try to increase your walking opportunities if you have a desk job that requires prolonged sitting. However, I am wondering, given your description of twisting and pulling sensations, whether your foot is actually twisting? If so, you might want to ask your neurologist if this could be dystonia, since there are other treatments for that such as anticholinergic drugs (which might not be great if you’re still working since they can have cognitive effects) and Botox injections.

[Lyn Richards]

Well, I’m aware of multiple factors in my life that are associated with PD. I lived for 28 years in a rural setting where our drinking water was from a well. Although there was not much agricultural activity in the area (some small hayfields, likely not fertilized or sprayed), the pump in the well dated from about 1977 or 1978, and may have been leaking PCBs by the time I left in 2010. A year before my first episode of RBD our house was treated for carpenter ants with permethrin, and the pest management fellow said that he gave it a heavy dose. Indeed, we could see white powder leaking out of the ceilings in some places for years, but we had been reassured it was safe.  Over the course of my life I’ve had multiple bumps on the head — at least one & probably three of these caused concussion symptoms. And I experienced considerable sleep deprivation off and on through adulthood due to producing papers during years of undergrad and grad programs, working long hours, writing long reports at night and of course menopause. Oh, and there are redheads in my family and I used to have a little reddish quality to my hair — the ginger gene.

[Lyn Richards]

Hi Ally,

I had 3 quite dramatic episodes of RBD about 2 decades before being diagnosed with PD. Each of them put someone at risk, although I didn’t properly appreciate the seriousness of this at the time and talked about them as amusing stories. In the first, I was acting out a dream of being trapped in my old VW van. I woke up trying to open a 2nd story window when the venetian blinds rattled…no venetians in the van 😉 The second involved trying to release some barn doors; I woke at the foot of the bed holding a TV set. My husband woke me from the third by catching my ankle before I stepped on him: I was dancing around the top of the bed mumbling, “The string….get the string!”  Since then I’ve had no further episodes. As a psychologist with an interest in sleep disorders I knew that whether this was sleep walking or RBD, it’svery unusual in adults, and that episodes like mine can be prodromal to neurological disorders such as PD. I wondered off and on whether I would develop PD, and wasn’t entirely surprised when I developed a tremor 22 years after the first RBD episode.

[Lyn Richards]

Hi David, I know what you mean about the pain of those leg muscle cramps — it can be frighteningly intense. I found that taking 150mg of magnesium citrate at bedtime helps. I haven’t had really severe cramps since starting magnesium about 5 years ago. Very occasionally I have some persistent moderate cramping, and if this isn’t resolved by walking around for a few minutes, I have a hot bath. The hot bath was also effective for the cramps before I started taking magnesium, although it took a while to work.

[Lyn Richards]

Hey Troy, Actually, although being dehydrated will cause your urine to be more concentrated and reduced in quantity, that concentrated urine could cause increased stimulation to your bladder and make the urgency worse – in addition to all the other problems resulting from dehydration. I know, so unfair! So you may want to drink more and add frequent bathroom visit reminders to the drink-more reminders on your PC 😉 I got some low profile knickers for incontinence (Knix makes good ones for women, & there are several sources for guys), and that helps with anxiety about not making it to the bathroom in time.