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Russell Wilson replied to the topic Nighttime Akathisia in the forum Living With Parkinson's Disease 2 years, 3 months ago
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…[Read more]
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Russell Wilson replied to the topic Avoiding Socializing in the forum Living With Parkinson's Disease 2 years, 6 months ago
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…[Read more]
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Russell Wilson replied to the topic Where do you see yourself in 5 years? in the forum Living With Parkinson's Disease 2 years, 11 months ago
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…[Read more]
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Russell Wilson replied to the topic Mini exercise bikes for exercise in the forum Living With Parkinson's Disease 3 years ago
Hi Toni,
thanks for the post.
I see one problem immediately, the way you’ve 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…[Read more]
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Russell Wilson replied to the topic Use of continuous release (CR) Carbidopa levodopa. in the forum Living With Parkinson's Disease 3 years ago
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…[Read more]
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Russell Wilson replied to the topic Use of continuous release (CR) Carbidopa levodopa. in the forum Living With Parkinson's Disease 3 years ago
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 s…[Read more]
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Russell Wilson replied to the topic Use of continuous release (CR) Carbidopa levodopa. in the forum Living With Parkinson's Disease 3 years ago
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 –…[Read more]
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Russell Wilson started the topic Problems living with change — loss of control in the forum Living With Parkinson's Disease 3 years, 3 months ago
Someone else here has written asking our opinions on how we feel about change. In that light, I’d like to bring to people’s attention an issue confronting primary care doctors “Downunder” — but I think it’s also likely to be one confronting doctors elsewhere, and therefore patients as well: see the original report…[Read more]
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Russell Wilson replied to the topic How do you feel about change? in the forum Living With Parkinson's Disease 3 years, 3 months ago
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…[Read more]
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Russell Wilson replied to the topic Do you have a pet? in the forum Living With Parkinson's Disease 3 years, 3 months ago
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…[Read more]
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Russell Wilson started the topic "back issues" of posts – searching for survey of off times in the forum Using our forums 3 years, 7 months ago
Hi guys,
looking for a past posting in the forums of the results of a survey that was conducted looking at the frequency of experiencing off times which found that, unlike earlier ideas, people can often experience clear periods of on and off even in the earlier years of being on dopamine. Anyone able to find that post for me, please?
We…[Read more]
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Russell Wilson replied to the topic Dehydration, does it happen to you more often? in the forum Parkinson's Disease Symptoms 3 years, 11 months ago
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…[Read more]
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Russell Wilson started the topic Get what you need from the health care service in the forum Diagnosis Information and General Questions 4 years ago
This is actually a plea for help — I’d like responses to an initial response of my own to an invitation for contributions to my local health authority’s development of a Disability Strategy
— see my “initial draft” of the response here — frozen by “performance anxiety” (one of my “internal demons” —thanks to Dr C for highlighting this…[Read more]
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Russell Wilson replied to the topic New Test Can Detect the Parkinson's in Its Early Stages in the forum Parkinson’s Research News 4 years, 1 month ago
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 s…[Read more]
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Russell Wilson started the topic Diabetes and risk for Parkinson's in the forum Diagnosis Information and General Questions 4 years, 1 month ago
Is there anybody else out there who’s had existing diabetes mellitus who’s later developed?
Some disturbing statistics out there! And maybe a ray of hope?
I had “T2DM” for about 20 years before being diagnosed with PD, and the way the research is going now, ALL people with “T2DM” should be closely monitored for non-motor symptoms of PD (which…[Read more]
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Russell Wilson replied to the topic Parkinson's Progression May Be Slowed by Vitamin B12, Study Says in the forum Parkinson’s Research News 4 years, 1 month ago
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…[Read more]
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Russell Wilson replied to the topic Parkinson's Progression May Be Slowed by Vitamin B12, Study Says in the forum Parkinson’s Research News 4 years, 1 month ago
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…[Read more]
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Russell Wilson replied to the topic Parkinson's Progression May Be Slowed by Vitamin B12, Study Says in the forum Parkinson’s Research News 4 years, 1 month ago
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
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Russell Wilson started the topic Parkinson's as a disability — Policy in the forum Parkinson’s Research News 4 years, 1 month ago
People might be aware that those with PD are usually found to have the lowest Health-related Quality of Life, often because of the range and severity of “disabilities” they live with. Many might not be comfortable with the label of being disabled, but sometimes we need to face unpleasant realities — if we’re not “disabled” now, we probably will…[Read more]
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Russell Wilson posted a new activity comment 4 years, 6 months ago
thanks, I will follow your journey — all the best to you!
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