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5 August 2015

 

Not much has happened since the last update in June. We have some sickness in the family but this is not the place to detail that. It is more a Facebook type article and luckily I am not on that particular site.

 

My Public Speaking engagements have been picking up and I have spoken on 14 occasions since moving to the Tweed in May 2014. I did 2 in 2014 and have had another 12 since I started again in March 2015.

 

This morning, 5 August, I spoke to the Southport Men’s Probus Club at the Parkwood Tavern. There was about 60 males who seemed to enjoy the presentation and a lot came up to congratulate me after with a couple commenting that I was one of the most entertaining speakers they have heard. I have been getting excellent feedback and am really enjoying this part of my life.

 

I feel like my Presentation, “Living With Parkinson’s Disease” has gone up a level. Don’t know how to explain my feelings but I seem to be more relaxed and comfortable and really in touch with the audience. Really buzzing and I need to chase up some more audiences.

 

I am getting a few enquiries about Duodopa from this Shakydennis site. These have all been people who are considering switching over to Duodopa but have a few reservations. I am always happy to take time to talk to anyone in this situation. My advice will always be: “If you get a chance to try Duodopa you really should accept”. What have you got to lose? I tell people that Duodopa is my closest friend other than my wife. Without it, my life would return to the terrible situation where Parkinson’s was taking control of my life but DUODOPA has given the control back to me. Hip Hip Hooray Hip Hip Hooray Hip Hip Hooray.

 

That’s all until next update.

 

 

13 June 2015

Hi, it’s me again pleading for forgiveness and understanding as in my usual slack way I have not updated this site since June 2014 – I had started an update on 1 January 2015 but it never saw the light of day - this will only be a small update to get me started and get this site more useful and user friendly.

 

One of my lovely close-knit family members has been spending time finding out what changes I think would be useful. Unfortunately I have not been any help to her so I hope she is still interested. Must admit I won’t be surprised if she has lost her enthusiasm.

 

After a slack period since moving to Tweed Heads I have started to chase up organisations to have me as a guest speaker talking about “Living with Parkinson’s Disease”. This year I have spoken on 8 separate occasions and have 3 booked in July and 1 in August – my total presentations are at 109. I have had some excellent feedback and really enjoying myself.

 

I have spoken to a couple of guys from the “Shake It Up Australia Foundation” and hopefully I can get involved in some fund raising activities for them. They are a non-profit organisation that is partnered with “The Michael J Fox Foundation for Parkinson’s Research”. All donations to Shake It Up go to research – Yes, that is 100% goes to research. The salaries and all other expenses are covered by the founding members. All research projects funded are directed to research conducted in Australia. If you wish to find out more about this very worthwhile organisation go to their website          www.shakeitup.org.au

 

I have had a couple of hiccups with my Duodopa, nothing too serious and all is under control again. I have written one poem which is shown in my Poetry section.

 

Watch out for weekly updates – fair dinkum mate.

ShakyDennis

 

11 June 2014

Hi there my 2 or 3 readers. Time for a short update.

We have moved into our apartment in “Serene Living” in Tweed Heads, Northern NSW Coast. We have just about unpacked everything but still have a lot of tidying up to do – such as working out where to hang pictures, paintings, etc. - buying a few bits and pieces of furniture such as TV stands – reorganising where we store things to make life easier.

 

On top of this we have to change our address – family and friends, insurance companies, banks, etc. It never ends.

 

My Parkinson’s symptoms flared up during the clear out the old house, starting early March and is just settling down now.

 

Apart from a good 40 – 60 minute walk most days I have been very slack in doing all my other exercises that I know are necessary for us Parkies. However, at 6pm today I had a swim (in an outdoor pool) and a spa and felt great (what a climate!). So hopefully tomorrow I will start walking, swimming and exercising every day – I hope this is not wishful thinking.

 

Sorry, but that’s it for now.

 

Keep well and keep smiling.

 

 

15 April 2014

I will have to have a look at this “Latest News” page as it is getting clogged up with old news, some of which could be deleted.

 

To all Parkinson’s People I say – DON’T MOVE HOUSE –maybe I’m just a wimp but the packing, storing, sorting, etc. really played havoc with my symptoms. Luckily I’m married to SUPERWOMAN who worked tirelessly to get up out of the house – I don’t know what I would do without her.

 

I recently received an email from a lady who had discovered the Shakydennis web page. What a wonderful story she had to tell. I found it quite inspiring – if you like it tell your friends. There are many ways people cope with chronic disease and here is a tale of humour and courage. I hope you like it half as much as I do – HAPPY READING.

 

Introduction

Robert, who is now 81, was diagnosed in 1985, so it has been nearly 29 years.  (He was an opera director in his working years.)  He has been very fortunate in the progression of the disease and the Doctor has attributed much of it to his daily golf and his bullying attitude concerning the PD. I’m guessing your positive attitude and all your interests have also been a help to you. Too many folks just give up. Our granddaughter is be married in Washington, DC in 3 weeks, and I think the stress of that trip is also making things worse for him. Your tales of stress are all too familiar to us!

 

Christmas Presentation by wife to a Group of Parkinson’s Patients

I would like to share with you an anecdote that epitomizes for me how Robert’s positive attitude has successfully bullied his disease for nearly 29 years. One day he and his buddies were having lunch after a round of golf. The guys were all complaining about their various illnesses and aches and pains. Robert listened quietly, as he usually does, and then piped up and said, “Boy, I’m glad all I have is Parkinson’s Disease”. As you can imagine, that caused quite a reaction and a laugh among the guys, but I’m sure it set them to thinking how fortunate they really were, even with all their aches and pains.

 

Robert and I have often remarked to each other that if you have to have a major debilitating disease, Parkinson’s is the only one we can think of where you can be totally immobile one moment, and then a few minutes later after the medicine has kicked in, be almost normal again, at least to all outward appearances. We always enjoy the humor of those moments when Robert is really ‘off’ and we’re struggling to get him to a chair. People are usually watching his efforts with horror. He sits down and after a quick dose and a few minutes, up he bounds as if he had been faking all along.  We try not to laugh when we watch the expression on people’s faces! Another instance in confounding people is his going up or down stairs. When Robert is so ‘off’ he can’t put one foot in front of the other, he can climb stairs with absolutely no problem. People will watch us struggle walking toward the stairs and when they offer to help us to the elevator, we politely decline. When we finally make it to the stairs, I tell Robert he turns into a ‘new man’ and easily climbs up or down! Another example is when I stick out my foot in front of him to give him something to step over. That appears to folks ‘not in the know’ that I am deliberately trying to trip him just when he’s at his worst.

 

Our son, David, was at a hockey game recently in Washington, DC, and saw a gentleman struggling to walk. David recognized the Parkinson’s stutter step and realized right away that must be his problem.  All of a sudden the man reached into his coat pocket, whipped out a metronome, turned it on, and was able to walk away to the metronome’s rhythmic beat. David was impressed that the man had found a successful way to maneuver in the stadium crowds and was able to enjoy a hockey game in spite of his disease. Robert couldn’t wait to try the same trick, but unfortunately it didn’t work for him.

 

We have found that when Robert is ‘off’ he can manage to walk if he puts his hands on my shoulders and counts or sings something very rhythmic. A few years ago we were in this position in the aisle of a plane. Robert was really struggling and the stress of delaying other passengers anxious to deplane was making the situation even worse. When we finally got to the exit door, the stewardess made some rude remark about our doing the bunny hop. I was too stunned to reply to her, but the more I thought about it, the angrier I got, and I ended up writing a complaint letter to the airline. We received a sincere apology and a travel voucher for each of us, which was certainly unexpected but welcome!

 

Robert has been retired now for over 15 years, so his Parkinson’s never really interfered with work. But he would often forget to take his medicine when he was feeling so well. I bought him an alarm watch, and we set it every 2 ½ hours all day long. I thought that would solve the problem. But a sleeve was often over the watch, and coupled with Robert’s slight hearing loss, he often never heard the alarm. But everyone else did, and they would remind him to take his medicine. Our grandchildren used to say, “Grandpa, you’re beeping. Take your pill.”  We solved the problem by setting it to vibrate instead of the beep, and then he was able to feel it.

 

 We have a few other tricks that have helped him during the off times in the night. We have given up our king size bed for two extra-long twins side by side. Robert sleeps on satin sheets and wears nylon pajamas to help him turn over in bed. We also have handles that slip securely under the mattress on each side which he uses to pull himself over or to steady himself with when he stands up.

 

 We continue to be so grateful, as I know all of you are, to Dr. xxx for his compassion and expertise and the clinical research studies he and several patients are involved in, and from which we all will eventually benefit. He truly cares about all of his patients. Dr. yyy also took care of Robert for many, many years, actually from the original diagnosis, and we are also so grateful for his expert guidance and friendship.

 

Robert never complains about his disease   He never says “Why me?” And he’s never embarrassed about his condition--frustrated, yes, but embarrassed in front of others, absolutely not. When he’s ‘off’, he takes some medicine and patiently (well, maybe not so patiently) waits until the medicine kicks in, and then he’s up and at ‘em again.  Michael J. Fox says-‘happiness is a decision - happiness is a choice”, and it’s in our power to make that choice.  We know from experience that regular exercise, both mental and physical, has been an amazing help to Robert’s Parkinson’s as well as to his mental outlook. On the days when the weather won’t allow golf, Robert isn’t nearly as good. All his friends tell me how brave he is and what an inspiration he is to other folks, but as all of you know, you do what you have to do--and it makes it a whole lot easier to do it when you have a cheerful, positive attitude. Never, ever give up or give in to your disease. You may not be able to do what you once did, but there’s still plenty that you can do, and it will be so much more fun with a smile on your face.

 

 As we approach this holiday season and the coming new year, our wish for all of you, and for us as well, is that we will continue to be blessed with the strength and courage to keep a positive attitude, and to be so very grateful for all that we have.     

Merry Christmas, Happy Hanukkah, and may God bless you in 2014.

FANTASTIC STORY

 21 MAR 2014

Hello – amazing, it is only a bit over 3 weeks since my last update. Might be a record.


Health

I am struggling a bit at the moment but there is a good reason for this – we have sold our house and have to be out by 27 March (we had 30 days).

While I don’t think that I feel stressed, my Parkinson’s Disease tells the real story. I find that I need extra medication often during the day and luckily my Duodopa makes this easy while ensuring that I don’t get too much.

I need the extra as – *not sleeping well

                      *working hard, for me, packing

                      *trying to finalise paperwork

                      *sorting out bills

                      *advising people/organisations etc of change

                      *feeling bad as my wife outworks me

                      *MAYBE I DO FEEL STRESSED!!!!


The symptoms I get when “OFF” (need extra medication) are

    * my posture is bad – lean forward and can’t straighten

    * my mobility suffers – cannot walk smoothly, shuffle, trouble where my feet only just get off the ground

    * cannot think clearly or concentrate

    and

    hard to explain

I have a general feeling that my mind and body are smothering my usual feelings of health. I do not know how to describe it. MAYBE IT IS MY PARKINSON’S PROGRESSING AND IS JUST LETTING ME KNOW.

The result is that my OFF symptoms are getting worse.


Now the good news – I have two presentations lined up without me doing any chasing, one in April and one in July. This alone cancels out the negatives.

To all other Parkos I say “Keep on fighting”

 26 FEB 2014

Hello to anyone who accesses this Web Page – I have just realised that it is 12 months since I last updated it - doesn’t time fly.

I have promised this before that I will try and keep the page up to date - here I go again – I will update at least monthly and if something happens that is out of the ordinary I will earlier.

I am still happy to receive emails about anything people may be interested in.

Here is an update to bring my story into 2014.


Health


Feeling on top of the world. My Parkinson’s Disease (PD) symptoms have little or no impact on my life – where would I be without my best buddy DUODOPA. I have been on this wonder drug since 11 December 2008!!!

and it is still working well. Still have the odd hiccup but mostly of my own doing. NO!!!! I AM NOT EMPLOYED BY ABBVIE, THE COMPANY THAT SUPPLIES MY DUODOPA, BUT I AM A BIG FAN. This drug has had such an impact on my life that I often forget that I am a PARKY – Parkinson’s sufferer.


I had been struggling a bit for a fair while with a lack of motivation, tired, uninspired, apathy couldn’t give a stuff that I couldn’t give a stuff. As depression is one of the most common PD symptoms I was well aware what the problem. BUT being a tough, masculine, in control Aussie bloke I knew that I could get it under control without needing help.


WHAT A LOAD OF RUBBISH. I, or rather I should say, my poor long-suffering wife, had to put up had with this for too many months. Finally, I admitted my that I was not improving at all and sitting around doing bugger-all, and spoke to my Neurologist and GP and here I am feeling as good as I can ever remember – not sure how good my memory is, but my mood is “dangerous”.


Change of Address

My wife and will be leaving Canberra and moving to a retirement village in Tweed Heads in May 2014. We both will be sorry to leave all our family and friends in Canberra but we feel that this is an important new phase of our lives together and we will have room for the many visitors that we hope and expect will visit us.


Irene has always wanted to live in a warmer climate, and the cold weather in Canberra has a negative impact on some of my PD systems.


We will also miss our regular visits to the Movement Disorders Clinic at Westmead Hospital – what a great bunch of people we have met working there – and we will definitely miss our regular with my Neurologist, Dr Victor Fung. What an impact this man has had on my life. My wife Irene, and I, just can’t believe how lucky we were to find Dr Fung. We will definitely get down at least annually to see Dr Fung and organise to call into The Clinic on the same tick.

11 February 2013

Public Speaking

On 4 February I was guest speaker at the First Conference of the company called AbbVie. This company supplies Duodopa, the Parkinson’s drug that has helped me immensely since December 2008. It also provides a number of other drugs for a number of chronic diseases.

My task was to talk about Parkinson’s Disease and the impact it has had on my family and friends as well as myself.

I found myself up on stage facing over 200 people which is by far my largest audience. I had a mike attached to me and could move around as I liked. This enabled me to roam around the stage instead of staying close to the lectern.

I really enjoyed giving the presentation and managed to keep the attention of the audience. I mentioned a number of funny things that have happened to me in the past but reminded them that they weren’t necessarily funny at the time they occurred.

I finished with a number of my poems and unbelievably I was given a rousing standing ovation. This is the first time this has happened and it gave me a real buzz – I must be a frustrated comedian I think.

Hope I can get a few more gigs like this one!!!!!!!!!!

Thanks to the employees of AbbVie for being a great audience.

 Promotional DVD

Abbotts, the company that supplies Duodopa want a DVD that people can watch that will give them an idea of what it is like to live day by day using Duodopa and the associated pump. The size and weight of the pump and the fact that there is a tube going through your stomach into your lower intestine, makes some people a bit wary of accepting the treatment.

So Irene and I had a film crew come to Canberra to film us using the pump, cleaning the tubes, replacing the batteries, replacing the the Duodopa cassette, etc.

They also interviewed us asking how Duodopa had changed our quality of life. They showed us with our grand kids, walking, driving, and the usual everyday things we do.

They filmed from 10:30am to 6:00pm the first day and from 8:30am to 1:00pm the second day. This will be edited down to 10 minutes and we can’t wait to see how it has turned out. Hopefully we will get a copy of it soon.

The film crew were very friendly and efficient and were well organised. But I must admit after all the repeat shots, etc I sure wouldn’t want to be a movie star.