Forum Replies Created

  • Russell Wilson

    Member
    October 16, 2020 at 7:18 pm in reply to: Nighttime Akathisia

    Are you relying on someone having exactly this “symptom” of a discrete cause? Looking for some “moral support”?

    What does the person’s treating neurologist have to say?

    Going “back to first principles” (my early training in biology, physiology etc) — basic neurology, basic (early) research one learns that this is a relatively common symptom of PD, associated with other “Extrapyramidal Symptoms”, especially when factors like age and severity are considered. It’s not usually associated with pain but, again, when one considers age and severity pain, often from rigidity of muscles (one of THE classical symptoms of PD that we all suffer from the longer we have the disease), is very common. One would need to ask a structured series of questions to see if it is truly “all over”. Treatments I wouldn’t like to guess at but you could look at things like Propanolol and Amantadine.  Again, depending on your degree of experience with searching the science literature, information on these is relatively easy to find, but the person’s treating doctor should be the first “port of call”.  I’ve only had PD for 5 – 6 years (“after diagnosis”), and haven’t got this, yet, so  thanks for giving me something else to look forward to, as if the number of meds I’m only isn’t enough as it is ;-D

  • Russell Wilson

    Member
    August 8, 2020 at 8:36 am in reply to: Avoiding Socializing

    I think you need to be fair to yourself, honest with yourself, and respect your values.

    Years “before” my illness with PD (unlike you, I’m a “new kid on the block” — only five years — looking back, like many I can recognise some early symptoms even years before the diagnosis), I was a psychologist, and spent some time considering the Acceptance and Commitment Therapy (ACT) approach to chronic pain. Central to that approach is acknowledging the experience of feelings, and seeing those in the context of other feelings, while committing to doing things consistent with one’s values. I’d like to encourage you to find out more about the approach. Ken Pakenham, Professor of Clinical Psychology at The University  of Queensland has used it with people with MS (check out his research papers), which he suffers from, but I don’t know of anyone yet using it with PD.

    The ACT approach cannot be reasonably divorced from cognitive and behavioral approaches, and naturally those approaches have something to offer coping with chronic pain and, I believe, to coping with PD.

    Ask yourself, if/when you’re off, why is it “inevitable” that you’ll be more stressed, tired, etc etc. Surely, prior scheduling and preparation for the outing might be able to be “better managed” than you’ve done in the past. What are your feelings of stress associated — your not wishing to be seen as more … what? not coping?, “abnormal”?, ….?. Are you more likely to experience these feelings around some people rather than others, can you draw feelings of support from some people and not others — make sure you’ve got your supports around you when you need them most!

    When you used to be more social / outgoing in the past, what did you hope to be able to do — can you have “more reasonable” (considering your difficulties) expectations of yourself? Can you prepare for “something special” you’ll be able to do for someone in particular in your social circle on the next occasion you see them — if this is something you particularly “value” being able to do?

    I wish you well, heck I wish us all well.  I’m aware of “needing” to “balance” what my friends say about what I’m able to do, and what I feel, in the moment — I do some voluntary work on a charitable fruit and veg “store” and “everyone’s” (some people in particular) are very supportive of me — to the extent of stopping me trying to do things they think I might not be able to do, but which I think I might — carrying particularly heavy boxes of produce — at the start of the day which I know I couldn’t manage later in the day. I get a lot out of this voluntary charitable work — social, support, validation, “do gooder” feelings. But it can be a challenge — mentally, physically, to be honest with my feelings, while acknowledging my very real limitations these days. And I have to realize it can only increase to be a greater challenge in the future.

  • Russell Wilson

    Member
    March 5, 2020 at 8:55 pm in reply to: Where do you see yourself in 5 years?

    Hi, Ally and Toni,

    thanks for participating in the forums,

    different people respond to “this” in different ways. Me, I prefer to know what’s “lying in wait” for me if I can, and so in the years since first diagnosed (due to tremor and initial response to dopamine — suggested by me, rather than the doctors) have spent a fair amount of time reading up about PD. Like many of us here, “if I had known before” I think my PD could have been diagnosed years before it was formally diagnosed, and it would have helped me not only plan better for what’s happened, but cope better with what’s happened while it was happening, for me. We now know more about the non-motor symptoms sometimes accompanying PD. For me, for several years I suffered from anxiety and depression —   and often felt confused and lost about my “dreads” — feelings of dread that would come upon me,  with associated “self-punitive” thoughts — “what’s wrong me with, why am I having these difficulties, why aren’t I sleeping, why am I experiencing these aches and pains — my doctor obviously doubts my common sense, he can’t account for them???” … etc

    Like a lot of people with PD I had to give up work early, but for several (4) years was happy experiencing relatively mild physical symptoms, but only since Christmas have my physical symptoms become more troubling, with marked rigidity, and balance problems making it much more difficult to engage in “forced exercise” almost impossible — I used to especially like walking — and short periods of jogging! (like across intersections). With all these things I’ve had to think more about planning for the future — what can I replace my walking exercise with; walking up the hills around home is nigh impossible — where can I move to; what in home help do I need? … can I get? Can I even get something to help me with typing on the computer?

    So … Lots of questions, not many answers … yet!

    Best wishes to you all

  • Russell Wilson

    Member
    February 7, 2020 at 2:39 am in reply to: Mini exercise bikes for exercise

    Hi Toni,

    thanks for the post.

    I see one problem immediately, the way you’ve described the intended exercise. Mind you, if your physical therapist knows his stuff so far as exercise for those with PD goes he’s probably already told you this. It’s possible to just “go for a stroll” or “go for a cruise” on a bike as easily as while out for a walk. Intensity is VERY important while exercising if you’ve got PD. This is a problem I’m currently trying to deal with myself. My balance and slowness of movement is becoming an increasing problem for me. Whereas last year I was able to walk easily at different paces, including short spurts of jogging, I can no longer do that — falling over my own feet if I try to jog.

    Nevertheless, research has shown that a style of exercise called “high intensity interval training” (HIIT) is especially efficacious for those with PD — do a Google Scholar search with “parkinson’s disease bicycle “high intensity interval training”” as search terms. I can’t imagine it being possible to have one’s attention diverted by interest in a TV program while concentrating on HIIT.

    You might also look at something with a broader effect on the body — some forms of resistance exercise, say. Last year (a group of us work out at the local university physio department and we’re just returning from our “Christmas break”) I used to particularly enjoy using the Rowing machine — seated, low impact, exercise, with effect on a broad range of muscles, as well as cardiovascular training.

    Wishing you healthy success.

  • Russell Wilson

    Member
    February 5, 2020 at 12:05 pm in reply to: Use of continuous release (CR) Carbidopa levodopa.

    So far as I know, Inbrij hasn’t yet been introduced into New Zealand, yet we need something to help us deal better with “off” periods (which I understand it to be useful for??).

    Sometimes you need to know the right jargon to better navigate the research literature. I’ve only recently gotten to know the terms “pulsatile stimulation” and “continuous stimulation”, relating to the effects of immediate and slow / sustained release forms of levodopa, but the terms go back in the research literature more than twenty years. From what I’ve seen of its promotion in the USA Inbrij would serve as a more continuous stimulation of dopaminergic effects on brain function, rather than the “on” / “off” effects of the usual drugs. So, one wouldn’t imagine Inbrij to have a pronounced or marked effect. I wonder if more could be done to educate patients about what sorts of effects the different medications should have? Perhaps it would also reduce the tendency to develop dyskinesias.

  • Russell Wilson

    Member
    February 3, 2020 at 11:18 pm in reply to: Use of continuous release (CR) Carbidopa levodopa.

    Caroline,

    thanks for your post.   I’m in the habit of investigating things pertaining to PD using things like Google Scholar, PubMed, and Google generally (actually, quite a few things, if you include the journal abstracts, list of new topics from recently published issues of journals, research abstracts review services, and drug information sheets, as well as personal communications from researchers, and so on). From my reading of the literature, dyskinesia seems to be due more, not so much to “too much dopamine”, but to the “on/off” nature of the drugs used to treat the PD — if one could have the same dose in the blood stream all the time one would be much less likely to suffer dyskinesia — and in this regard your neurologist seems to be doing much of what he can to help you. I’m in New Zealand, where our available “COMT inhibitors” — which act to “even out over time” the effects of drugs like Sinemet — do not currently include Entacapone, Inbrij or Rytary, at least not to those reliant on government funding. So, our options, compared to yours, are pretty limited.  Came across an interesting comment about Rytary during one of my searches “It’s important when going on to Rytary that one is careful not to engage in magical  thinking” — in other words, “it certainly ain’t no magical pill”.

    Other things I’ve seen caution that the “continuous release” drugs don’t always live up to their promise either.

    I know there’s a lot of stigma attached to “mental illness” but I’d encourage people not to neglect all sorts of things to take care of  their “stress”, including diets suited to managing stress, and even “formal” “therapy”, or psychological guidance — your brain and nervous system really are under attack! The immediate response of my primary care physician when my diagnosis (which he’d initially given me) was confirmed by the neurologist was “well, I suppose you’ll be becoming an expert in stress management techniques, yoga, whatever!”

  • Russell Wilson

    Member
    January 27, 2020 at 1:34 am in reply to: Use of continuous release (CR) Carbidopa levodopa.

    I have been diagnosed for less than five years and have only recently started taking an increased dose, and CR tablets, from what I took from the start. So, I’m very sorry, I don’t have anything to contribute, and am using this only as a learning opportunity.  I’ve been suffering increased “rigidity” (really stiff muscles, in my lower body — very painful, overwhelmingly so — in the morning). Just before Christmas I woke up one morning and couldn’t roll over till much later. To date, the changes in my medications hasn’t been working for me.

    Mind if I ask from where did you get the idea about about how much, and of what, to take when in this situation? However, if one was trying to do this for “ordinary” anxiety, one would be aiming for a higher dose overall, and making sure one’s non-pharmaceutical coping strategies were well developed in addition to the pills (I used to work as a psychologist).  To think that someone once said neurologists would take over the work of psychiatrists completely (part of the anti-Psychiatry movement)!?

  • Russell Wilson

    Member
    November 7, 2019 at 7:04 pm in reply to: How do you feel about change?

    I think the question is too broad. How do I feel about what sort of change?

    If you’re asking me about what I FEAR will happen with PD — the inexorable loss of all that I am, all that I have about myself? I don’t feel good about that. I cannot run from it. Do I “brace” for it? Let’s say I prepare myself for it — I’m much more prepared than I ever would have thought — getting my Advance Directive for health sorted out, working out the pros and cons of different sorts of “people” for enduring power of attorney. Even “little” things — sorting out who I want to be the various parts of my health care team — “I want that pharmacist – she’s had a father with PD, she’s caring, understanding, supportive, she knows me and what’s important to me, what I need or might need”. “I want that primary care doctor because he’s known me for so long, he respects me and my commitment to health, gives me freedom to explore various options, tests, supplements.”

  • Russell Wilson

    Member
    November 6, 2019 at 11:11 pm in reply to: Do you have a pet?

    Should I get a pet?

    That’s the question I’m pondering, and would like some some feedback from from those “in the know”.

    As a boy I was always in a household where there were pets — cats, dogs, birds, tropical fish.

    Recently there was a cat near where I lived, and I totally loved it.

    But I’ll be moving soon, and was wondering if I should get my own.

    Trouble is …. you guessed it. I don’t have any live-in supports with me, and my own rate of progression, so far, has been pretty slow, but noticeable, but what about the future?! I want to be sure I can take good care of my pet, looking after all its needs, for companionship, stimulation, as well as “the basics” — feeding, health care etc.

    What do YOU people think? Is it fair to the animal? Given what I could be looking at? It’s (hopefully) going to have a much longer life, free of disability, than I feel I can reasonably expect for myself.

  • Russell Wilson

    Member
    March 7, 2019 at 11:59 pm in reply to: Dehydration, does it happen to you more often?

    I’ve now had PD for about three years but it’s really only been in the last few months that this seems to have become a real issue, even a problem for me. It’s especially concerning since I’ve got a co-morbidity — with diabetes, which I’ve had for over twenty years (21 in fact). One of the problems that can happen with diabetes, long-term, is deteriorating kidney function — and naturally enough, dehydration can aggravate this kidney dysfunction. Not good news! (and this is from somebody who makes sure they always have water available to them). The need to urinate frequently, part of PD, must also contribute to the problem.

  • Russell Wilson

    Member
    January 2, 2019 at 5:33 am in reply to: New Test Can Detect the Parkinson’s in Its Early Stages

    This is all very interesting BUT …

    I’ve just had a quick look at the paper but it doesn’t seem clear what they mean by “early” — when neurologists think a patient has PD when …?  when they’re exhibiting motor abnormalities? Sorry, but I personally wouldn’t call this early — we  do know that in many cases patients can display non-motor symptoms up to a decade or more before they’re starting to be seen by a neurologist — shouldn’t this alternative time be called early instead?  By the time people start seeing neurologists a lot of damage has already occurred. Shouldn’t we be prioritising other indicators or risk factors — eye movement tremors, or diabetes — the first a direct sign, the latter a highly significant (Hazard Ratio about 9) risk factor — combine the latter with a questionnaire measure of non-motor symptoms and we’d be doing well.

    I’m happy for neurologists finally having a chemical test to “confirm” diagnoses but …

  • in New Zealand, where medications are at least partially funded by Government (under Pharmac) even if a medication has some preliminary evidence for it there might not yet be enough to warrant its prescription being subsidized — like I was mentioning for Vitamin D, and most importantly for opicapone, a relative to entacapone — both members of a class known as COMT inhibitors — they slow the breakdown of dopamine in the system, making the level of dopamine more stable — something to help with “off” times — it requires considerably more evidence before it gets included amongst the drugs overseen by Pharmac. A pity, in some ways, as in the latter case opicapone has been shown to be more effective than entacapone, and to have fewer associated negative events — entacapone can be hepatotoxic — damaging to the liver — hence it’s not used until much further down the track of PD symptom development. It was once thought off periods weren’t experienced in early PD, something we now know is incorrect — lots of things like that, a real problem for more traditional models of PD. I think there’s some evidence that the more stable the level of l-dopa in the body the lesser the chances of dyskinesias developing — hence the need for a safer form of COMT inhibitor.

    • lost my train of thought there!  There’s no research sfaik about low B12 being a contributor in the prodromal stage of developing PD — like so many other things. I did have a period of low B12 a few years before being diagnosed with PD, but it was quickly corrected and GPs haven’t thought there’s any need to repeat the test/B12 injections, after a number of normal results — even when those doctors were advised of the connection. What can one say? The etiology of PD is just so darn complicated!

  • one really needs to be careful to not read headlines out of context — this was mentioned on ParkinsonsNewsToday BUT one needs to remember that the “subjects” — the people with PD who were studied were all low on B12 at the start. It’s not likely to be effective if you have normal/healthy levels of B12