Don
Forum Replies Created
-
I am participating in a Flinders University in South Australia year long double blind trial of light therapy units, both helmet type and hand held on the gut. Results should be available later this year.
My participation is nearing the end and seems to be having a positive effect – hopefully it is not the placebo effect!
-
I was prescribed Neupro patches early in my PD journey but was unable to tell whether it was effective so am unable to recommend it.
However, I am amazed at the price difference for the patches in the US compared with here in Australia. Both country’s patches are made in Germany but US has packs of 30 whereas Australia has 28. That does not explain the difference in prices of around USD $800 and about AUD $80 but most of those with PD qualify under the noncontributory Pharmaceutical Benefits Scheme to a cost of AUD $6.
-
I attend a monthly PD group meeting, sometimes with a neighbour, and find the guest speakers interesting and/or worthwhile. It is good interacting with fellow attendees after the speakers but sometimes I wish I drank tea or coffee as tap water is the only alternative!
-
I feel very fortunate in having no depression nor anxiety but after reading Gale’s reply breathlessness that I have attributed to asthma may be PD. Is it another of the myriad of symptoms?
-
Thanks Fred for your response. You said the procedure was successful for your right hand without mentioning whether your left was similarly helped. MattR’s response suggests that MRgFUS is suitable only for one side only.
Thank you for your responses.
-
Parkinson’s SA and Shake It Up are two Australian organisations that I find worthwhile but I cannot overlook Parkinsonsnewstoday.com; I find it compelling reading and it comes every day.
-
Four shots so far and I guess more to come, possibly on an annual basis akin to flu shots.
A Covid positive test was followed by feeling slightly below par for one day only but very prompt application of anti-virals probably helped.
Over a third of all Australian Covid deaths are the unvaccinated but they are only 3% of the population.
-
Muscle atrophy is my main concern but I don’t know whether PD is the culprit. Whatever, everything is a lot heavier than it used to be!
-
I am still driving as normal including long trips and at this stage (8 years since diagnosis) PD seems to have had little, if any, affect on driving ability.
If/when it does I will find it very hard to give up a lifetime of mainly enjoyable driving but my wife is a good driver and will step into the breach.
-
I have chronic rhinitis – a box of tissues only lasts a day or two – and watering eyes, both symptoms of which have been attributed to PD.
But my weird symptom is a tingly sensation in my index finger when urinating! I cannot recall whether the sensation occurred before I was diagnosed about 8 years ago. -
Ron
What i was to say has already been said in various ways but it deserves emphasising.Numerous studies show long term use of levedopa induces dyskenesia which may be worse than the tremors it is trying to treat. The side effect is bad enough for some drug companies to be researching antidotes!
Despite my neuroligist’s objections I have cut back levedopa from 800mg/day to 200mg with no noticeable affect. Perhaps I am lucky as I do not suffer from many of the other symptoms of PD.
Good luck and have a look at the research.
-
Hello Mary Beth
I have been exposed to small amounts of glyphosate but by far the biggest toxin for me is asbestos. In the 60s, 70s and and early 80s I used to build with asbestos cement sheeting although I used to cut it with hand tools, minimising the dust.
If I were a candidate for asbestos related diseases it should have happened by now. Regardless, I doubt there is any PD link with asbestos.
Keep those discussions coming.
-
I had my Pfizer booster a month ago with no effect at all, just like the two AstraZenica jabs beforehand.
For all the effect I had I may as well have been given distilled water!
Does anyone else agree that continuous video clips of injections going into arms is off-putting?
-
REM behavior disorder (RBD)was one of my first clues that I have PD.
Whilst my wife is still game to share a bed with me she does so at some risk as I sometimes lash out (mainly hitting attacking animals in my dreams). Keeping as far away on the opposite side of the bed helps mitigate the risk but means I am liable to roll over onto the floor!
PD has a lot to answer for. -
I am glad to see that I am not the only Australian on the list. We are building a new house at Aldinga Beach south of Adelaide, South Australia. It’s a great location – next to a beautiful beach and nearby McLaren Vale wine district.
May I add that Parkinson’s News Today is veery worthwhile. -
Not sure if exercise is effective in delaying PD as my main form of exercise is busy daily living but I do 2 exercise classes each week and find the balance sections exacerbate my mild tremor into something much more severe. So much so I am thinking of quitting the classes.
-
At this stage I think being ‘fully vaccinated’ means having 2 jabs but with efficacy of a booster it proably will be a requirement in future to meet the fully vaccinated criterion. To answer your question, yes I will have it as soon as 6 months have elapsed since my second jab.
-
I was suspicious that I had PD 10 years ago and it was confirmed 2 years later. PD has progressed very slowly to the extent that it is only early stage one.
As any medication or treatment has no effect on the progression of PD but can only treat the symptoms I wonder what benefit there is to be gained in early diagnosis.
-
My wife does not always understand me but then again, I don’t think she ever has!
It would be nice to have something but me to blame. -
Do we now refer to Long Covid sufferers as Covies and those with Cerebral Palsy as Palsies? Hopefully Parkies does not catch on.
-
My wife and I spent a lot of mainly enjoyable time maintaining and improving our large, intensive garden of about 1 hectare on some steeply sloping ground in the scenic Adelaide Hills. Some little while after I was diagnosed with PD we decided to bite the bullet and downsize onto a more manageable property. This happened about 3 years ago but my symptoms have not noticeably changed since then to the extent that I have quit taking any medication. If we had stayed I could have well managed but although we do miss our large garden we are no longer tied to it during the summer months when watering is necessary and there is not the concern about loss of the garden in a bushfire. So my PD diagnosis is a cloud with a silver lining.
-
Thanks Matt and Emily for your info re MRgFUS being a unilateral treatment.