Allie J

Sorry.. “Melonspin” is what I typed but my predictive text changed it without me noticing.

I recently took part in a light therapy trial at QUT Institute of Health and Biomedical Innovation in Brisbane, Australia. It is researching Photoreceptor- directed light therapy in PD.

Their “research has shown that there are specific cells (Mel’s ops in cells” in the back of the eye that are not working well in people with Parkinson’s disease…[Read more]

About 6 months ago my hair suddenly started falling out. I checked with my neurologist if this could be caused by my PD or the medication (levodopa/carbidopa, Amantadine & Artane). He said he had never come across it before. From his reply I interpreted he could not categorically rule it out but it is not a common problem. I think it started…[Read more]

Congratulations Beth Browne. You give me hope that I may be able to continue driving for another 10 years. I’m 74 and diagnosed with PD 4 years ago. I am still driving. I ensure that I concentrate and focus when driving and avoid chatting if I have a passenger.  I dread the day when I need to give up. I too love the independence. I live alone so…[Read more]

sorry to hear of your reactions to the COVID-19 vaccinations. My PD was diagnosed 4 years ago. I was not sure how the vaccine would affect my PD so talked with my doctor who advised it was fine to have it.  I have now had both jabs of Astra Zeneca and thankful that I had no reaction at all on either occasion. I am on Levodopa/Carbidopa four times…[Read more]

Mary, I’m not sure that I have a favourite. I enjoy them all. I do miss the company of the other participants though. We used to go for coffee afterwards and that was great. It is with a different group (who are from all over he state) that I do the virtual sessions and not face to face of course. In Queensland COVID is under control now but s…[Read more]

Thanks Mary Beth. My exercise regime has increased significantly during lockdown. I have more time available and doing it at home is very convenient. I’m in a regional area in Australia and many of the capital city PD exercise trainers have taken their classes online through Zoom, organised by the state Parkinson’s association for its members. The…[Read more]

Toni, you are welcome. I hope this works for you. I found it comforting to find someone else express the same as I felt. I don’t feel so alone in this. Other PD people I know don’t seem to feel this but as everyone says, we are all different.   I feel that just managing activities of every day living, such as meal preparation, housework (tho…[Read more]

Hi Toni. I can relate very well to your post above. You have expressed this very well. I too find I have to pace myself.  Too much stimulation over a few days will result in exhaustion and my brain becoming non-functional and unable to think. It is as if I’ve used up all my supply of dopamine and need to retreat for up to 5 days to produce en…[Read more]

Hi Marilyn, the forum moderator has posted the video from Parkinson’s News Today about the Reviver Trial in her post above. It is the first entry in this forum topic.

Will be interesting to hear the results of this Reviver trial. I am in Australia but not Melbourne where the trial is. Earlier this year I had an episode of Peripheral Vestibular Hypofunction (which included vertigo and spacial awareness difficulties) on the left side which is the side most affected by my PD. The physio who treated me for this was…[Read more]

Yes Jean, I find it very debilitating. I can’t seem to keep up with demands of everyday life. I do what I can but I live alone and just keeping up with house, garden, appointments, exercise program plus finding time to catch up with friends seems impossible. I get very little done each day and on OFF days when dopamine seems low (or virtually n…[Read more]

Jean, I am like you in that I too wake up extremely fatigued even after a good night’s sleep. I struggle with fatigue all day every day. I do exercise and often (but not always) feel a bit better for a short while but then fatigue takes over and I must rest. If I go out too much to appointments or socially, I then need to just rest up for 2-3 d…[Read more]

So interesting to read other’s experience with apathy. Tiredness and apathy are my most debilitating symptoms. I have to pace myself and build in rest days to my calendar. If I’m out and about for 2-3 days in a row, I’ll need a day or two resting at home after. Some days I accomplish absolutely nothing. Other Parkies I know (which is only a few)…[Read more]

I am new to this forum and find the comments very interesting. I was diagnosed in 2017.
Thank you David for that Davis Finley Foundation webinar you posted above. I have never heard my symptoms and PD explained so accurately. This speaker has a true understanding of PD as I experience it. Because my tremors are reasonably well controlled at this…[Read more]