[Allie J]

Definitely a lonely journey. All my friends and family know I have PD. When they see me, everyone says “Gee you look well”. Of course I always say “yes I’m doing well. I work at it.” They have no idea how much work goes into trying to manage medications, when you can eat, when you can’t eat, the very many ‘off’ days where I sit home too exhausted to do anything, the constipation and incontinence management, the concentration required just to try to walk normally, exercises to keep the muscles flexible and thinking with a brain that works like a slow internet connection etc etc. It is no good trying to explain all this and I’m sure they don’t want to hear it. So yes it is a lonely journey.

[Allie J]

Parkinson’s Qld also in Australia and Dance for Parkinson’s on Zoom (Zoom sessions commenced during COVID). These exercises have benefited greatly.

[Allie J]

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

[Allie J]

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. These cells function can be simply determined by measuring your pupil movements in response to light.” This clinical trial is using a light they developed to preferentially activate these cells.
They believe that by using this light 30 minutes a day to preferentially activate Mel’s ops in cells in the eye will help to sleep better which will positively impact on movements such as balance, gait and tremor during the day.

The trial is still ongoing and won’t have results for another 12 months. I did not feel any different but perhaps I was one of the control group.

[Allie J]

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 around the time I started the Artane. However, I also seem to have new hair growing.
I don’t think anyone really knows the answer.

[Allie J]

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 a day. As they always say, we are all different.

[Allie J]

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 state borders are still closed as there is still a few new cases in southern states.

[Allie J]

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. These are free and have been great. They include sessions on Pilates, Dance with Parkinson’s, Exercises to strengthen core muscles class, balance and cognitive skills class and a session of Boxing for PD. So that’s 4 days a week. I’m hoping they will continue these Zoom sessions after lockdown as they are so convenient.

[Allie J]

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 (though that is minimal these days), juggling meals and medications (levodopa/carb four times a day), exercises daily to help the PD, shopping, gardening, managing business affairs, medical appointments and resting etc leaves me very little time for other activities. Especially as I’m so much slower these days. However I do enjoy my social activities with friends but do have to limit them. Thank goodness I am retired and not still trying to go to work as well. Of course at the moment we are all in lockdown which restricts social and outside activity. I must admit I’m enjoying having to stay home.

[Allie J]

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 enough dopamine to recover my thinking ability. This is very restrictive and debilitating. Fortunately my family and friends seem to accept  when I say “No” to further activity (although I do wonder if they think I’m just being lazy). I find that over stimulation does seem to exacerbate symptoms such as fatigue, stress and tremors. Even catching up with friends and having conversations seems to deplete the dopamine and tire the brain afterwards. This is how I view it anyway.

I’m sorry your family and friends try to encourage you to participate when you feel you’ve reached your limit. No doubt they mean well but I think it must be difficult for anyone to understand how the brain has its limitations when there is insufficient dopamine for it to function fully. I can only suggest that you are firm and decisive in stating you are not up to it as you need recovery time. Good luck and I hope you can resolve this.

[Allie J]

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.

[Allie J]

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 specially trained in correcting vestibular problems and said that PwP are more susceptible to this. Let’s hope there is some success with this Reviver trial. Any help or treatment will be very welcome.

[Allie J]

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 non existent) I get nothing done. It really affects life as we once knew it. It’s a constant never ending struggle.

Like Mary Beth says about her father, I seem to be able to function well when doing something I really enjoy, like lunch with friends but then crash afterwards and often need a day of nothingness next day. I think this is one of my most debilitating symptoms as others are mostly helped by meds at this stage.

I have to pace myself.Fortunately it seems to me that many Parkies don’t suffer this extreme fatigue. Have you found that?

[Allie J]

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 days. I have to pace myself. My brain function seems to drop out when too fatigued.

[Allie J]

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) do not experience this so I’ve never been able to confirm if it was caused by the Parkinson’s or not but felt sure within myself that it was but then I tend to blame everything on my Parkinson’s (very convenient! ). Particularly in the mornings I find it very difficult to get the brain and body into action and really have to push myself. Once I get going I improve although some days my brain just refuses to crank up and function. I figure my brain is more starved of dopamine on these days. It can be very debilitating and frustrating as there are things I want and need to get done. I do try to go walking each day and go to an exercise class weekly but have been restricted by knee problems. Now that I’ve had a knee replacement, I’m able to increase my activities and I do continue to do so. I’m more motivated to do so without the knee pain. I’m sure the additional exercise helps me a lot both mentally and physically. Social activities such as meeting up with friends for lunch etc, I also find very beneficial to my mental attitude. I’m very interested in other Parkies views about this.

[Allie J]

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 stage by my medications, people tend to say “you’d never know you had Parkinson’s”. I tend to leave it at that rather than try to explain because I find it difficult to express these non visible symptoms.

[Allie J]

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 would have to rely on Uber or friends or buses for local travel but would be unable to gallivant around the countryside like I do now.

I bought an electric bike but PD has robbed me of my balance and I wobbled all over the place and sometimes fell off , so I sold the bike.