Vanity, Silly Old Fool Syndrome and Joie de Vivre - the Movie


#1

I was diagnosed in 2006 at the age of fifty. Parkinson's has limited what I am able to do but it has also enriched my life. My partner and I panicked at first and, in a spirit of do what you can while you can we did a lot of travelling - in India and Nepal, South America and the Middle East. I found that exercise was very helpful - this is something I would very strongly recommend to the newly diagnosed younger Parkinsonian. Here is a 30 minute documentary that describes my recent experience of the disease. Please find enclosed: honesty and humour and some sadness too.


https://www.youtube.com/watch?v=zAW5dRTkvA0


#2

Check that link please, it's not the one that you described.


#3

Ricardo, Hi there


I was in two minds whether to watch your documentary or not, but i did!  I have had PD for approximately 6yrs but function quite well so the prospect of watching a film showing anothers personal experiences of the disease brought out the coward in me.  I live in ignorant bliss most of the time and don't look too much into the future.  I don't relish the time when all that i can think of and talk about is myself and the disease, when it consumes your thoughts and your day to day living, now that scares me!


The film itself was interesting and quite brave. Interesting in as much as the experiments with the walking and wheelbarrow and the challenges you set for yourself. I have always exercised from the age of 25 which is when i had an operation for crohns disease, the exercise i believe kept me in remission for 17yrs. Since being diagnosed with PD i have not stopped. Last year i completed a 12 mile Tough Mudder assault course, two 10km runs and 107km bike ride.  The goals and challenges we set for ourselves are an important ingredient to our sanity and wellbeing. With that in mind can i request that the next film you air should be Uptown Funk , Ricardo version! 


BTW i clicked on the link shown above, no problem

Take care

Rachel

 


#4

Hello Ricardo

You have given the viewer a brave and sensitive insight into PD, particularly into mobility problems. You don't mention a tremor, so I assume maintaining movement Is the big challenge for you. I can see myself in a few years time experiencing much the same. While in one way I didn't want to watch, in someways forewarned is forearmed. Like the idea of the ceiling poles. My shuffle indoors is very frustrating, but I am lucky in being able to  walk "normally" out in the open  ( so far). Your theory on why wheelbarrow walking works is interesting - I can not walk and carry a bag of garden rubbish at all, unless I hoist it onto my shoulder like a coal-sack. Had thought it  was to do with improved upright posture, but may also be about messages for less automatic big movements getting through from brain to muscle.

I am currently in France on a cycling holiday. Cannot do the major cols or larger distances now, but still enjoy the ambience etc. and up to 30 mile circuits. My personal challenge is simply to keep fit and strong enough to stay upright on my road bike for a few more years.  I do have to be extra careful at road junctions and in traffic, and struggle to walk it/park it, (mind over matter, and counting or  saying left right, left right helps). Have had to learn to accept assistance when necessary. So far so good!

So, keep up with the challenges, even if they take longer to achieve than planned. Look forward to your next video of you doing that triathlon! And more wonderful Welsh landscapes!

Best wishes and luck and thanks for posting the link. It worked OK for me.

S


#5
I think you have a very good perspective

#6

Mobile Throne

Many thanks for your comments Rachel and Supa. The triathlon I haven't managed this year and I forgot about Uptown Funk. I need to do some dancing and since we have a friend staying with us this winter who was once a dancer by profession there is a chance. I have found that the progression of the disease has been slower than I anticipated and that has given me cause to celebrate. I did not think that I would still be able to do the things I can 10 years down the line. I recently said to my partner and son that Parkinson's has enriched my life. They both agreed without hesitation. I know that I have been luckier than some. All the same my advice to the newly diagnosed is to plan some adventures and challenges way before you plan for disabled access.or suchlike. Here is a very short video about humour and a little denial helping me to come to terms with new situations:

https://www.youtube.com/watch?v=lyhV3IzK630