The Parkinson’s Clinic

Our local Clinic is in Rankin Park Hospital next to the regional John Hunter Hospital in Newcastle New South Wales.

It is a very worthwhile place to visit and I am on my second 8 week course which has been very helpful apart from having to start sometimes at 9 a.m. That’s is not helpful.

It is hard to speak about it on a personal level for some reason. It does produce a lot of emotion so maybe that is why but I have learnt a lot coping mechanisms by going there.

Over my first 8 weeks I spent time with the Occupational Therapist, Voice Therapist, Psychologist,Physiotherapist and the Team.

The staff are lovely. They made me feel special, in a nice way. They individually watched how I walked, talked,ate,moved etc and came up with gadgets and gizmos, movements and coping mechanisms that help a lot. I have mentioned some in my posts.

They gave me a really nice sandwich and cuppa because my appointment meant missing lunch! That was a real treat.

They said ,’Nobody Dies FROM Parkinson’s we die with it from other symptoms which I take to mean if we can work on our symptoms- exercise seems crucial and I learned breathing, face movement, voice,stretching excercises, all intended to strengthen different aspects and most importantly keeping the brain working and producing levadopamine and making the neurons do what neurons do, we may do better.

Coupled with medication from my neurologist I am actually improved as far as PD symptoms. Due to increasing arthritis,thyroid and fibromyalgia and the fact that most pain meds aren’t suitable I do have to lie down between activities but can do exercises lying down and I turn and stretch and keep moving.

I listen to audio books to keep my mind off my body when I can’t sleep.

I watch YouTube videos if my legs are having spasms or pain is keeping me awake. My brain has to focus on that instead and forgets about the spasms. For months I checked in on the live webcam from the Kilaleo volcano as it went ballistic in Hawaii. I followed videos from people who were there and got to know them day by day. I was even able to text to them on a ‘live feed, all while trembly and sleepless in the middle of the night. Now that was something I taught the Clinic!

I gained a lot from attending the programme. It didn’t cost, and is helping me stay independent. Plus it was not first thing in the morning!

I also write this lying down using my smartphone with a special adjustable knob on the back for holding, and a stylus for tapping out the letters.

On bad days I dictate with voice to text, which is good for the vocal area.

Close friends have seen my speech speed up, my movement ease.

At the time of writing I am poorly with diverticulitis infection which I have had for a while and I’ve probably mentioned in posts. I need another course of antibiotics to get me back on my feet but its Parkinson’s dance class tomorrow at Charlestown. The helper is coming 2 collect me but I will ring the doctor’s surgery first thing and see whether I can get in there with my driver’s help and give the dance class amiss although I enjoy it. I have been pretty light-headed and when I went for my walk round to block this afternoon I felt very faint. Not sure what this is to do with. I want to be ready 4 the clinic on Wednesday when they come to collect me at 9 p.m. this is a group activity program but I am the only female except for some wives who come along as carers. Last week they had a session together without their husbands which seemed to cheer them up. Meanwhile we did exercises and had a lecture about something. It will come back to me. I was sick so don’t remember much except feeling rotten. We get paperwork to bring home to refer to.

The previous week there was a talk on incontinence and bowel problems, all necessary to know for the future.

There are 4 more weeks to go and the last one is a party which we will have earned.

When our group split up last week asome went to voice coaching while others did step exercises in the corridor and then we switched.

I was so glad to get home and went straight to bed for the rest of the day. I I got very upset during exercises when I could not compute how to do a simple rocking motion with my feet. First time that has happened.

I didn’t know then how poorly I was but next morning the doctor rang and said infection had showed up on the CT scan and how was I? I thought I didn’t need any further antibiotics but now have to start from scratch.

I’ve been looking into diets which was another thing that’s was talked about at the class and I am on all the wrong foods for diverticulitis but then I have to also cut back on protein because it interferes with the levodopa absorption in the brain or it.

I cancelled my shopping helper for Thursday to try and get on top of things with this infection. I don’t want to miss this week if I can make it. People come a long way to attend.

Being in a group is nice. They are all friendly but it can be scary seeing those who are more advanced. I’m dreading getting to that stage. Hopefully it won’t happen.

I Recommend going to such of course if you get a chance especially if you are feeling isolated when dealing with this challenge.

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2 thoughts on “The Parkinson’s Clinic

  1. Hello Eunice, I just wanted to say Thanks! thanks for sharing your experience. i’m sure it helps you, but i think it helps all of us to know how others are coping. and if you don’t mind, we all benefit from seeing how spunky you are, how open to new things, even with your various afflictions.
    all the best, Mac Greene

    Like

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