tag:blogger.com,1999:blog-46459171652444503192024-03-19T13:14:09.840+02:00Elaine BentonLiving with Parkinson's and Gaucher's disease.
Shaken, not stirred, a Kindle eBook.Unknownnoreply@blogger.comBlogger837125tag:blogger.com,1999:blog-4645917165244450319.post-35631444151194520882019-02-22T07:00:00.000+02:002019-02-22T07:00:00.443+02:00Anne Hathaway<span style="font-family: arial, sans-serif; font-size: 12pt;">Contacting someone famous can be difficult
if not impossible, so I thought I’d try through my blog. Nothing ventured – nothing
gained. Being a fan of Anne Hathaway I have probably seen everything she’s appeared
in and have watched her career grow over the years. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Seeing the film “Love &
Other Drugs” (which was made a few years ago) particularly moved me for obvious reasons. </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I could relate to the character Anne
Hathaway portrays, having Young Onset Parkinson’s, diagnosed at age 44. </span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I wanted to let Anne know how well she
portrayed the character. I see this film not merely as entertaining but
bringing greater awareness of this terrible disease to the general public who mostly
think it’s an “old people’s” disease, where as in the film, Anne Hathaway clearly
brings home the message that Parkinson’s can strike at a young age. </span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Like the
character in the film, I also feel ridden with guilt as I need my husband more
than he needs me. There were many raw truths that hit home, and it was hard to
swallow some of the scenarios on screen, that I live daily. </span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Thank you, Anne, for
taking on this role which was far from glamorous. I’m sorry you didn't win an award for your marvelous
performance, but I can assure you, that you won a place in many hearts from those who
suffer from or take care of someone with Parkinson. Bringing this subject
matter into the limelight and onto the big screen makes you a winner, and wish
you continued success with your career.</span></div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4645917165244450319.post-24714729103068859132018-12-14T07:00:00.000+02:002018-12-14T08:07:59.162+02:00Clear the decks.<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Our house is beginning to look like
a hospital rather than a regular home. There is often a traffic jam around the
kitchen island. At a quick glance, one couldn’t fail to notice the presence of
a wheelchair, a walker (Zimmer frame) a pair of crutches, and various pill
boxes, i.v. stands, an assortment of medical apparel and emergency numbers
along with prescriptions on the fridge door.</span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">One might wonder why we have non-matching
chairs in the lounge, and should you happen to spend an evening in our household,
you’ll likely participate in playing Parkinson’s musical chairs. You’ve never
heard of Parkinson’s musical chairs? <span style="mso-spacerun: yes;"> </span>Well
let me explain. Similar to the children’s party game, only there is no</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">music and there,has to be at least one
person present, who suffers from Parkinson’s disease. I spend most evenings moving
from chair to chair, alas in vein, hoping to find a comfortable position. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">We have tried to find an armchair
that is comfortable for me and being short, it’s not easy finding a chair with
small dimensions. We thought we’d found one, and bought it, but once at home, I
found it wasn’t as comfortable as I had thought in the shop. We couldn’t return
it, and so this was the first of a succession of chairs in our quest for the
perfect chair. </span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Sitting in a chair on display in a shop
has likely been sat on by hundreds of customers and can feel completely different
from the brand new one delivered straight from the manufacturer to your house wrapped
in its protective plastic. After a further unsuccessful purchase of another
chair, I began to realise, it’s not the chair that’s the problem, but yours truly.
It’s as if I don’t feel comfortable in my body. So our quest for a comfortable
chair has come to an end, and each evening I continue to move from chair to chair.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4645917165244450319.post-47709053750624611492018-08-24T07:00:00.000+03:002018-08-24T07:00:07.435+03:00If you can’t swallow…<br />
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Although I am on the Duodopa pump, I
still have some “off” times, but they are nowhere near as often or as bad as those
before I was put on the Duodopa treatment. One of the first things I notice
when I’m about to go “off” is that I can’t swallow. If you can’t swallow, you
probably can’t eat! I was beginning to miss my evening meal altogether and wake
the next morning with strong hunger pains. I was ravenous, and my weight began
to drop. I knew I had to get some nourishment in me.</span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">This is where soup comes to the
rescue. The summer heat has not died down yet and it’s absurd I’m eating bowls
of hot soup. This is yet another change in our lives, admittedly a small one. We
have always eaten our main meal at night, but now I have to take Parkinson’s
into account and am trying to have a substantial meal at lunch time and eat a
lighter supper in the evening of soup or soft foods that are easy to swallow.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">My friend’s husband always says
jokingly “eat desert first”, but now often I have a scoop of vanilla ice-cream,
and this cold treat slides down with little effort, and then I find I can
manage to swallow thick hot soup. I endeavour to put as many different
vegetables and pulses in the soup which is liquidized. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I may have to start drinking Ensure
again, which contains all the vitamins and calories a person needs daily.
Ensure comes in two flavours: vanilla or chocolate. I’ve also found that
sucking on ice cubes helps when I can’t swallow anything else. Just like a car
needs petrol to function, the human body is fueled by eating nourishing food. <o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4645917165244450319.post-56522369437099925192018-08-17T07:00:00.000+03:002018-08-17T07:00:02.904+03:00Let's Dance!<br />
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">I love to watch ballroom dancing,
and as a child growing up in the 60’s many parents sent their children to
ballroom dancing lessons. Perhaps this was to combat the change in society and
music with the arrival of the Beatles and all that followed in the 60’s. It was
an era of great change. But I digress, so back to Tchaikovsky, watching the
dancing couples gracefully swirl around the dance floor, whether a waltz, the
fox trot, the quick step, all held a charm and fascinated me.</span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Unfortunately, my husband doesn’t
share my enthusiasm, claiming he has two left feet. Well, just between you and
me, I’ve seen his feet which are perfectly formed and to make his dislike of
dancing even more unfounded, his mother and her two brothers won several gold
medals in ballroom dancing many years ago. So not only is his theory of having
two left feet absurd, he more than likely has inherited the ability to dance and
it’s in his DNA.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">There is strong evidence that
dancing is good for you, a form of enjoyable exercise, whilst interacting with
other couples who are in the same situation - what could be better? There are
specially designed ballroom dancing classes for those with Parkinson’s and I’m
willing to give it a go.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I’m fighting this devil of a disease
with everything I’ve got. Not wanting to sound negative, but realistically I’d
be surprised if I’ll manage to participate in dance classes, but as they say, nothing
ventured, nothing gained! So, throwing caution into the wind, I’m hoping my
husband reads my blog this morning and gets this far from subtle hint!<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4645917165244450319.post-61986254041589259482018-08-07T07:00:00.000+03:002018-08-07T07:36:18.624+03:00Home safe and sound<br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">My husband has returned safe and
sound from his week away. Being my primary caregiver, the last two years have
taken their toll. I want to say a huge <b>THANK YOU</b> to all those who took care of
me during this long overdue break. Until you step into his shoes and get a
clear hellish look at Parkinson’s disease up close, you cannot begin to imagine
the raw cruelty, festering like an open wound, gradually that eats away both
the sufferer and caregiver. A caregiver must have a break from the tyranny that
rules</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">endlessly, to
recharge their internal batteries, from the ongoing emotional and physical demands,
otherwise they will eventually burn out and not be able to function.</span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My family and friends rallied around
and a rota system put in place ensuring that I wasn’t alone at any given time. The
nights were particularly hard as I’m disconnected from the Duodopa pump, and
this is when the painful muscle spasms start and can go on for hours. Who needs an expensive membership to a gym when you've got Parkinson's to give you a personal workout at home? If I’m
really unlucky – these antics can continue the entire night and only when I’m
totally exhausted and its time to reconnect to the pump at 05:00 do I find relief.
Every patient is different, and experiences are not the same. It’s a matter of
trial and error. Other patients on the Duodopa Pump may not suffer during the
night as I do. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I am so grateful to have the caring
support around me, and realise it may have been a shock for them to see what my
husband and I have to endure, and how very important it was for him to have a
break from it all.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-84197489278847241412018-07-28T09:30:00.000+03:002018-07-28T09:30:05.669+03:00Battle Weary<span style="font-family: arial, sans-serif; font-size: 12pt;">As Parkinson’s runs its course, I am
forced into battle day and night. I’ve been fighting this relentless disease
for 11 years, but the last three years have been particularly hard and are
starting to take their toll on my husband and myself. In the early stages of
Parkinson’s, I managed to cope, but as time passed, I was experiencing more “off”
than “on” times and had no quality of life.</span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It was on 5<sup>th</sup> November
2017, that I changed from oral medications to Duodopa which comes in a jell
form administered by a pump directly into the small intestine. Despite Duodopa
being a life changer – it is not a cure and doesn’t stop Parkinson’s from getting
worse. However, it has given me better quality of life and has bought me time.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My caregiver is my devoted husband,
and I cannot think of a harder job. Together we fight Parkinson’s but are becoming
battle weary. My husband has taken a long overdue break and gone away for one
week to re-charge his internal batteries from a physical and emotional sense. My
daughter and her husband, along with family and friends together have me
covered for the week, taking care of me and ensuring I’m not alone.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Yes, I miss him terribly, but I know
how much he needs a rest and to take time out from our incredibly difficult
situation. I want to thank all those who made this possible – we are extremely grateful.
This break also allows him to attend the wedding of our dear friend’s daughter.
I’m sorry I couldn’t join in the celebrations, but I’ll be there in spirit and
wish the young couple congratulations. <o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-4645917165244450319.post-56983698028618871402018-07-13T07:00:00.000+03:002018-07-13T07:00:03.284+03:00As Time Goes By<br />
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<span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">They say a watched kettle never boils.
The same could be said when unable to fall asleep in bed at night. I keep
glancing at the clock and watch the minutes slowly pass, one by one. I can hear
the loud ticking of our carriage clock in the lounge that chimes</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">on the hour, and once every half an
hour.</span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">How I wish I had a little of Tinkerbell’s
fairy dust, for I’d sprinkle some over me, think happy thoughts and fly out
into the night. I’m not too sure where Neverland is, but there are no ticking clocks
and time stands still, Peter Pan and the lost boys have escaped the cruel reality
of this world. Surely this has to be one place that Parkinson’s does not exist.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">The stronger I fight Parkinson’s,
the stronger this lousy disease seems to retaliate. I’m having a daily tug of
war with an unworthy opponent.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-4645917165244450319.post-60840540115107788512018-06-29T07:00:00.000+03:002018-06-29T08:21:33.691+03:00Parkinson’s Waits for nightfall.<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Most are fortunate
to go to bed at night, snuggle under the covers and gently drift off to sleep. I
used to take a good night’s sleep for granted, but not anymore! We’re lucky if
we get 2 or 3 consecutive hours of sleep. You wouldn’t believe what goes on in
our bedroom at night! No, I’m not talking about that. I’m talking about the
painful dystonia which haunts my nights. Through trial and error, I’ve found
the best position for me, is to be flat on my back with my arms straight down
by my sides, or laid across my chest, resembling an Egyptian mummy. I don’t
have many options since I can’t lay on my stomach due to the PEG tube that connects
me to the Duodopa pump. This tube disturbingly dangles freely out of a small hole
approximately 8cm above my navel. For some reason I can’t breathe if sleeping
on my right side, nor can I sleep on my left side as this puts painful pressure
on the long piece of tube in my small intestines. Are you getting the picture?
I dread getting into bed at night for it’s not comfortable and certainly not
restful.</span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I am
detached from the pump at 10pm, so this is when the fun often starts. I say
“fun”, but be rest assured, Parkinson night time antics are far from fun. My
poor sleep deprived husband often ends up massaging the cramped muscles, which
can be anywhere from curling toes, thighs, calves, to shoulders and neck, or if
I’m really lucky, they can all cramp up at the same time!<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My right
arm often shoots up into the air for no apparent reason, as if possessed or got
a mind of its own. It’s incredibly painful as my arm violently pulls my whole
body and sometimes my shoulder is black and blue from the amount of deep muscle
massage needed to get my arm down.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">My
breathing becomes labored and I can’t swallow, which is very unpleasant not to
mention, a little scary. If my torso goes into spasm, it feels like a Boa
Constrictor has wrapped its body around my chest and unable to massage the
muscles surrounding the heart and lungs, the only thing I can do is to get out
of bed, stand up and do some of my exercises. I go up on my toes, walking on
the spot, stretching and moving my body, generally trying to distract and confuse
the hell out of Parkinson’s. This agony can go on for half an hour, two hours or
more.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<span style="font-family: arial, sans-serif; font-size: 12pt;">When the
muscles finally calm down and Parkinson’s has had its fill of torturing me for
the night, I slump back into bed exhausted. Dawn is approaching and a new day is here, and so i get to battle Parkinson's again with all its unpredictable tricks.</span><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-8784968665813243292018-06-22T07:00:00.000+03:002018-06-22T08:30:29.738+03:00Hold Still<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I was
having an X-Ray and the technician said to me “Hold still.” I did my best to
stop wriggling and shaking, but it wasn’t good enough to produce a clear X-Ray.
The technician had to start again and re-positioned me, repeating loudly in
case I was hard of hearing (which I am not), “Hold still” while he quickly disappeared
behind the protective booth. Try as I might, I could not stop moving. The
technician, rather irritated, repeated the performance once more.</span><br />
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<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Third
time lucky, I thought to myself, but I moved just as he was taking the X-ray. By
now, he was running out of patience and muttering under his breath, said,
“What’s wrong with this idiot?” “I am not an idiot, I have Parkinson’s!” I
replied indignantly, furious with his lack of empathy. If anyone was an idiot,
it was the technician, but of course, my good manners refrained me from saying
this out loud. He stopped in his tracks and stood still. Slowly turning around,
he looked me in the face for the first time since I had entered the room and apologized.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">He had
seen ‘Gaucher disease’ and the instructions of what needed to be X-rayed on the
form I’d given him. It was written quite clearly a little further down the page,
that I also suffer from Parkinson’s, but he had not bothered to read everything.
If he’d had the decency to look at me, he would have realised I have Parkinson’s.
<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">You’ll be
pleased to know that for the fourth X-Ray, I held my breath and concentrated
hard on not moving. Success at last and I was able to leave the X-Ray
department. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Years
ago, one would have to wait a considerable time for the X-Ray, which would be
inside a large brown envelope. Today it’s much easier, as X-Rays along with a
written report, go straight into the hospital’s computer system. By the time I
got back upstairs to the ward, the doctor had already seen my X-Ray and read the
report. How times have changed.<o:p></o:p></span></div>
</div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-66993360150084035262018-06-15T07:00:00.000+03:002018-06-15T07:00:03.285+03:00Never give up hope<br />
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">Each day
I wake up to hear the birds chirping away in the garden, announcing the night
is over and it’s a new day. One of our neighbours parks his truck in the
street, and the familiar sound of the engine is very distinct. Like clockwork,
every morning I hear him start up his truck and off to work he goes. You could
set your watch by his departure. Gradually the street comes alive as families
send their children off to school and their parents leave for work. Everyone is
so busy, they barely have time to breathe.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Whilst
this hub of activity goes on around me, my life is slowing down, and I find
myself moving from the slow lane onto the hard shoulder, and feel like a
spectator of sorts, watching life speed by in the fast lane. There are so many
things I cannot do anymore, therefore I try to concentrate on the things I can
do, but the list is getting worryingly shorter as time passes by. Living with a
degenerative disease, nothing stays the same for very long.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Living
with Parkinson’s disease is like living with a ruthless thief, who stealthily
steals a little more of my life each day. It doesn’t help to grieve for the loss
but accepting and coming to terms with my ever-changing situation is not easy. I
try to keep positive, and having support from family and friends, well let’s
just say, I couldn’t get by without them, especially my amazing husband who is also
my caregiver.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Before I
was diagnosed with Parkinson’s, I must admit, I knew very little about this and
wish with all my heart that I was still blissfully ignorant of this rotten
disease. We all have hopes and dreams for the future, but I never envisaged my
life turning out this way. I guess no one does. All I can do, is make the best
of a bad situation, stay cheerful, maintain a sense of humour and never give up
hope.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4645917165244450319.post-14839533041703311482018-06-08T07:00:00.000+03:002018-06-07T21:14:18.189+03:00Added complications<span style="font-family: "arial" , sans-serif; font-size: 12pt;">You wouldn’t
eat a roast beef sandwich smothered with hot custard, or cheese cake topped
with tomato ketchup; they simply don’t go together. Having Gaucher disease with
Parkinson’s is much the same – they are a terrible combination. If you are
wondering where I was last Friday, I was flat on my back once again and put out
of action having a herniated disk. The last time this happened was only about a
month ago.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The sharp
nerve pain from my lower back that radiated down my leg became excruciating as
Parkinson’s did its best to exacerbate the situation. Dystonia was pulling me
this way and that and I writhed in agony – not a pretty sight I can assure you.
Apart from painkillers there’s not much one can do, other than attempt to lay
still. Well Parkinson’s was not about to cooperate any time soon. I needed this
added complication like a hole in the head!<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-4645917165244450319.post-68615613360912618582018-05-25T07:00:00.000+03:002018-05-31T12:49:26.626+03:00Problems with swallowing and speech<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It has
been 11 years since I was diagnosed with Parkinson’s, and like most patients over
the years I have tried a varied cocktail of pills, trying to find the right
balance and effective treatment possible. Pills come in every colour imaginable
and vary in size and shape.</span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">What
mystifies me, is how some medications, that are expressly for Parkinson’s
disease are sometimes quite large making them difficult to swallow, causing
panic. Why have pharmaceutical companies not thought of this problem? With
today’s technology, how difficult can it be to make pills small, instead of
producing some large enough to make one wonder if they are intended to be taken
orally or put elsewhere?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Apart
from size, surely it's possible to coat all pills in a hard candy like
shell, instead of the powdery outer coating that can get stuck</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">if not
swallowed quickly, sticking to the roof of one’s mouth or worse still at the
back of the throat, disintegrating in one’s mouth instead of being swallowed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">For many
Parkinson’s patients, swallowing can become problematic. I am fortunate enough
to have weekly sessions with a highly professional charming doctor who specializes
in swallowing and speech therapy. I try to do the exercises several times a day,
as part of my daily regime.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It’s been
a busy week and am looking forward to the weekend. Wishing you all good health –
until next Friday, it’s over and out from me!<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4645917165244450319.post-9437922683949086162018-05-18T09:30:00.000+03:002018-05-18T09:46:46.691+03:00Are You on the Duodopa Pump?<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I spent Tuesday
in hospital being checked out by a Gastro Surgeon, as I’ve been in a lot of
pain in the area where the hole and pipe are attached to the Duodopa pump. If you
are on this treatment and are experiencing constant pains in your tummy and a little
light bleeding, it would be great to hear from you. Sharing experiences with other patients is priceless.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span>
<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Another
week has flown by, and my back is much better than it was. Of late, my voice
sounds gravelly and I often have to repeat myself several times till I’m heard.
It’s as if someone has turned my volume down. I also have great difficulty in
swallowing (particularly at night when I’ve been disconnected from the pump). I
have sessions with a doctor who specializes in speech and swallowing difficulties,
and I have various exercises that I do several times a day.<o:p></o:p></span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I would
just like to say “Happy birthday” to my cousin. Have a great day and hope you have fun celebrating today.<o:p></o:p></span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">There’s a
cheesecake sitting in our fridge whispering my name. I love cheesecake but rarely
have it, as I’m the only one in the house who likes it. Along with millions
around the world, tomorrow our eyes will be glued to the television seeing the
Royal Wedding. There is something about all the pomp and ceremony that
captivates the world.<o:p></o:p></span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">So whatever
you are doing this weekend, whether celebrating your birthday, watching a Royal
wedding, eating cheesecake or seeing the Cup Final between <span style="color: blue;"><b>Chelsea </b></span>and <span style="color: red;">Manchester United</span>. <b><span style="color: #4472c4; mso-themecolor: accent1;">“Come
on you Blues!”</span></b><span style="color: #203864; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #203864; mso-style-textfill-fill-colortransforms: lumm=50000; mso-style-textfill-fill-themecolor: accent1; mso-themecolor: accent1; mso-themeshade: 128;"> (just in case you wondered wh</span></span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">ich team we support), have an enjoyable time surrounded by those you
love.</span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-55903477006387953052018-05-11T07:00:00.000+03:002018-05-11T07:00:04.443+03:00Thankful for small mercies<br />
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">Thank
goodness there has been a vast improvement from this time last week when I was
suffering terrible pains from a herniated disk in my lower back. I was rendered
immobile for several days, unable to stand, walk or sit down, my only option
was to lay down in bed. I am now back on my feet, taking things nice and easy.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I’m
afraid that’s all for this week. Have a good weekend everyone and I’ll catch up
with you next Friday.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4645917165244450319.post-13020480553745750172018-05-04T07:00:00.000+03:002018-05-04T07:00:00.643+03:00Just when you think things are improving!<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">How’s
your week been? Hopefully better than mine! When suffering from Parkinson’s
disease you learn to expect the unexpected, for life can throw a curveball and
this latest episode is one I could have well done without. As if Gaucher
disease and Parkinson isn’t enough to contend with, I’ve been in bed since
Sunday with a herniated disk in my lower back causing terrible pain. Recommended
to lay still, is almost impossible if you</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">have Parkinson’s. I can’t stand, sit or
walk at the moment, so writing my blog this week is taking a great deal of
effort.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Fortunately,
my husband is quite a dab hand in the kitchen, but there are times when “takeaway”
is the quickest and easiest solution for the evening meal.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">What did
we do before there was “takeaway”? When I was young, growing up in England, the
only “takeaway” was the quintessential fish and chips. Traditionally, fish and
chips were wrapped in yesterday’s newspaper for insulation and to absorb the
grease, with an inner layer of white paper for hygiene. Sadly, fish and chips
are no longer served in newspaper due to “health & safety” regulations. The
cod, haddock, plaice or hake was deep fried in a golden delicious batter,
served with thick unevenly cut chips topped off with a good shake of vinegar
and salt. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Recently,
a fish and chip shop opened nearby, where they fry fish to order so everything
is fresh, and a tasty tartar sauce which they make themselves, but no
yesterday’s newspaper in sight. In my present condition, I think you can guess what
we’re having for dinner tonight!<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-8532265290893378162018-04-27T08:00:00.000+03:002018-04-27T08:00:13.345+03:00There’s always something new to learn.<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I had a pretty
rough time last week, which prevented me from writing my blog.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The cold
winter weather, in particular the rainy season has a huge effect on my bones,
especially the joints. The pains are made worse by Parkinson’s dyskinesia and dystonia
which constantly shake my delicate painful bones. In these circumstances, I rely
on morphine tablets, relieving the pain so it becomes bearable.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Constipation
is a very common problem when suffering from Parkinson’s disease and I was told
when Duodopa is administered by a pump, it is important not to be constipated otherwise
the medication won’t work properly. What I did not realise was that having diarrhea
is just as bad, for the Duodopa is literally flushed straight out of the
system.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">This past
week has been yet another learning curve, discovering this information the hard
way, it was as if the Duodopa had just stopped working and I was thrown into a
permanent “off” state. I have been on the Duodopa pump for six months now, but
clearly there are things I still don’t know.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I wish
you all a relaxing good weekend, but most of all, good health.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-85063560315463932602018-04-13T07:00:00.000+03:002018-04-14T08:29:56.930+03:00The Pros & Cons of Duodopa<br />
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Like
everything in life, there are good things versus bad, pros and cons and as many
a Parkinson’s patient will tell you, there are “on” and “off” times that get annoyingly
worse as the disease progresses.</span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">For example,
one of</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Duodopa pluses, is being able to eat at whatever time I want. I no
longer have countless alarms going off on my mobile phone, reminding me to take
my pills, and waiting approximately 45 minutes between taking a Dopicar tablet
and eating (in particular protein such as meat, chicken or cheese). All my
family and friends were very understanding and accommodated my rigid eating
times which allowed me to get the optimum result from the</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">daily
regime of Parkinson’s medications. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It’s one
thing to control meal times in one’s own house, but quite another when you have
been invited to someone’s home or are eating at a restaurant. It would be the
height of rudeness to hurry one’s host with serving on time, and often in the
past I have had to forgo eating as I was more concerned that my pills were
given the best possible chance of working. It can even get difficult in a
restaurant or cafe, and if the service is slow, I can miss the window of opportunity
to eat a healthy meal containing protein.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I am
often teased in our family about how my stomach can tell the time. Perhaps I
swallowed a clock when I was young?! But I doubt this very much, and think the
explanation is more to do with DNA, as my brothers and a cousin of mine, all
have this internal clock and need to eat at regular times. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Duodopa
is not a pill, and therefore administered in a completely different manner,
bypassing the stomach altogether. <o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4645917165244450319.post-79534854729348145412018-04-06T07:30:00.000+03:002018-04-06T07:30:31.145+03:00A Family Wedding<br />
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">Naturally
we’ve been looking at the photos and watching the video of the wedding again
and again. I don’t think I’ll ever tire of looking at them and re-living the
most wonderful and special event of our lives. I expect every parent feels this
way.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">It’s a
bit like when you are pregnant for the first time. Well-meaning people try and
explain that your life will never be the same again, and although you listen
attentively and nod your head in agreement, thinking “of course things will be
different” only when that little bundle of joy arrives, with no instruction
manual, do we finally understand the enormity of what people have been trying
in vain to impart.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">There are
certain events in life that must be experienced personally, and no amount of
preparation will suffice. Divorce, loss and ill health being the major ones
that first come to mind. If anyone thinks they can imagine what it’s like to
live with two chronic diseases, then think again. Unless standing in my shoes,
you can’t possibly comprehend how every facet of my life, and that of my
darling husband has been changed beyond all recognition. </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">The pump and the
Duodopa medication is most certainly not a cure, and is not trouble free, but it’s a life changer and
arriving at the 11th hour, was not a moment too soon, has literally bought me
time and unquestionably improved my quality of life. </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">However, Parkinson’s is
merciless and devout in its cruelty, quietly and patiently waiting in the
wings, for just the right moment when it will attempt to reclaim center stage. </span><span style="font-family: Arial, sans-serif; font-size: 12pt;">So, until
that time, I shall endeavour to live my life as always, making the most out of
every day, and embracing fully, all that I hold dear.</span></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-7953372869543025262018-03-30T07:00:00.000+03:002018-03-30T07:00:31.559+03:00Duodopa Pump<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">After my
three nights spent in hospital, I was thrilled to be considered a good
candidate for “Duodopa” - a Parkinson’s treatment that I had only recently
become aware of. During my short hospital stay, the trial run proved how a
patient can benefit, substantially</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">improving one’s quality of life.</span><br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Three
weeks later, I returned to the hospital and had a permanent “Peg line”
surgically inserted. The Hospital were very good, and the surgeon told us the
operation went well and considered minor surgery, I was allowed home the same
day.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The
following day, needless to say I felt pretty rough, but this was to be expected. A nurse came to our
house to show my husband how to change the dressing and explained how to look
after the Peg Line. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">So, I am
now sporting a “Peg Line” which is attached to a pump, who has become my new
best friend! It never leaves my side, and we go everywhere together. I was
given several different vests, pouches and bags so that I have a variety of
options. It does restrict one’s clothing a little. Although the pump weighs
only half a kilo, you’d be surprised how heavy it becomes when you’ve been
wearing it since 05:00 and only at</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">22:00 when I go to bed at night, am I detached
from the pump. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I hope
the manufacturers are working on a lighter weight pump. There is an amount of maintenance
involved with flushing through the tubes at night before detaching one ‘self
from the pump. Once a week, instead of using regular tap water, believe it or
not, we were advised using regular Coco cola to flush through the tubes.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The pump
runs on two regular AA batteries, so we had to get a stock of these in, as the
batteries last exactly one week. Also 20 ml syringes are required for flushing the</span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"> tubes. </span><br />
<span style="font-family: arial, sans-serif; font-size: 12pt;">Whilst in
hospital for the three nights, my husband was taught how to use the pump, and
once at home I became comfortable with working it. Although I have to admit, at
05:00, I am not able to manage by myself.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Without
the <a href="https://www.blogger.com/null" name="_Hlk506389089">Duodopa </a>and its pump, I seriously doubt I would
have made it to my daughter’s wedding. Duodopa enabled me to walk down the
aisle with my husband and daughter, who was a vision of beauty in an elegant
long white bridal gown. The smiles of pure joy on the newlywed’s faces was
simply precious as they danced the night away. My handsome husband dressed in his new suit, was smiling from
ear to ear the entire evening. <o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-76889701730635494142018-03-23T07:00:00.000+03:002018-03-23T07:00:10.154+03:00Duodopa Pump Brings Hope!<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">Duodopa treatment
is not necessarily suitable for every Parkinson’s patient. A full examination
and consultation must be done to ascertain if you are a candidate for</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;">Duodopa.</span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I’ve
found not all hospitals have a “Movement Disorder Clinic” and not all clinics
offer “Duodopa”, a relatively new medication which is a therapy for</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">patients
who are in an advanced stage of Parkinson's disease, with severe motor
fluctuations (on and off), when conventional oral therapy is no longer
effective. The portable pump delivers Levodopa – carbidopa in the form of an
intestinal gel, through a small tube that connects directly into the small
intestine. The medication is given throughout the day, which allows a constant exact
amount of medication to be administered and thereby decreasing the Parkinson's
symptoms. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Before I underwent
surgery to put in place a peg line, I was invited for a three-night stay in the
Neurological ward, where I had a trial run to ensure I was a good candidate.</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">The
Duodopa nurse gave me instructions for my trial run with the Duodopa pump and
told me to bring with good walking shoes and my walker!!!! Walking shoes and my
walker? The nurse certainly sounded confident. This had to be a good sign,
right?<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">Sure
enough, once attached to the Duodopa Pump there was no stopping me. I grabbed
my walker and husband, and we went for a walk. We left the hospital grounds and
a little further along the street there was a small shopping mall. We found an
ice-cream shop and decided to stop for some mandatory ice-cream. After sitting there
about twenty minutes, we decided to make our way back. I very cautiously got
up, wondering if I’d be able to walk. It was an undisputable YES. I had walked
further that one day than I had in months.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-19840386272065750022018-03-16T06:27:00.001+02:002018-03-16T06:27:42.249+02:00Pay It Forward<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I have never been good at shopping for
clothes, so this was going to be a real challenge. I needed help from someone
who is good at making impossible things happen. My sister-in-law decided to start
with a reconnaissance mission to find the shop with the largest selection of
possible dresses to save me the leg work. The following day, she was having
coffee with a good friend and the forthcoming wedding along with my “Mission
Impossible” of finding a suitable dress that would not self-destruct in 15
seconds, came up in conversation!</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It so happened her friend had a dress</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">hanging
in her closet</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">that likely she would never wear again. A year
ago, as mother of the groom, she had bought a beautiful dress for her son’s
wedding. Delighted to be of help, she happily gave me the dress. Despite the
two of us being different shapes and sizes, not to mention height, the dress
magically fitted me surprisingly well, and just needed shortening and a couple
of minor alterations. The colour, royal blue (my favorite colour) the style flattering
and the fabric very forgiving should I spill anything.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">When strange things happen out of the
blue, things you cannot explain; is the universe trying to tell you something
or do you try to rationalize it as simply a string of weird coincidences? About
twenty years ago I made a shawl from royal blue chiffon, and painstakingly sewn
sequins and bugle beads (also in royal blue) in a swirling pattern each end of
the shawl. I had given this to a dear friend, who had kept it wrapped in tissue
paper in pristine condition all these years, only to find herself giving it
back to me as it went perfectly with the dress. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">It’s amazing the transformation that
takes place when a professional does your hair and makeup. There appeared to be
several “Fairy Godmothers” hard at work ensuring this Cinderella would go to
the ball. Looking at my reflection in the mirror, I could hardly believe my
eyes. I have never felt so glamorous in my life. A BIG THANK YOU to all those who made this happen.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"> <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">At a
wedding, the spotlight,</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">as it should be, is undoubtedly on the
bride, and it is her special day to shine. Both mothers of the bride and groom
are expected to be dressed up to the nines, not to outshine the bride, but
subtle enough, setting them apart from the other guests. This ultimately ends
in women buying dresses special enough to meet the criteria which unfortunately
means she’ll more than likely never wear it again. Just imagine how many of
these beautiful gowns are hanging in wardrobes, sadly never to be worn again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I
suddenly had an epiphany, an idea that could turn into a great venture, along
the premise of the film “<i>Pay it Forward</i>”. After scouring the Internet, it
didn’t take me long to find I wasn’t the only person to come up with the same
bright idea. There are in fact many out there, selling, swapping and donating
their special dresses they got to wear but once. Whenever I have a good idea,
it always seems that someone else has already had the same thought!</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-84521613968485561342018-03-09T07:00:00.000+02:002018-03-09T07:00:39.276+02:00My Goal Kept Me Going<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">I could
easily have given up. It would have taken very little to throw in the towel and
call it a day. But I didn’t – I’m a fighter and I wasn’t about to allow
Parkinson’s to steal me away from my husband and the pleasure of being at our
daughter’s wedding. We have one child and I was determined to walk with my
husband by her side down the aisle. The wedding had been planned, invitations
sent, hall and catering booked, and as the date drew closer, making it through
each day and night was getting harder and harder. There were three months till
the big day, and although this sounds like a short time, in my condition,</span><span lang="EN-US"> </span><span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;">it felt
like an eternity. It took all my energy and strength as I struggled and fought
constantly staying totally focused on my goal.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: Arial, sans-serif; font-size: 12pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Being
“mother of the bride” it was obvious I would need a new dress, and not just any
dress. It would have to be elegant enough befitting the mother of the bride.
How on earth in such poor shape was I going to manage dress shopping, going
from shop to shop, expending huge amounts of precious energy undressing and trying
on dresses? Just the thought of searching for the perfect dress threw me into a
spin. This is where men most definitely have the upper hand. Let’s face it, a
suit is a suit, no matter what colour, or fabric. I think you’d be hard pushed
to find someone saying, “Haven’t we seen him wearing that suit before?” <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I have to
say, my husband did look very handsome on the day and I humbly confess, he is a
far better shopper than me, and knows exactly what he wants. He went shopping
and in just one hour had purchased a lovely new grey suit, a tie and shoes. I
am envious of his ability to effortlessly shop for clothes. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">My
darling daughter had clearly known for some time what she wanted, has excellent
judgement and a very good eye for spotting what will suit her. Like most
mothers, I had dreamt one day she and I would go together to choose her wedding
gown, but I was seriously ill and much to my disappointment, I was unable to
join her. On the big day she got ready at our house in her old bedroom and as
she serenely glided down the stairs, my eyes welled up with tears of pride at
the little girl who had blossomed into this amazing woman who stood before me.
Looking beautiful in a full length, white, elegant dress, she was about to
begin a new chapter in her life.<o:p></o:p></span></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-67488131609280406482018-03-02T07:00:00.000+02:002018-03-02T07:00:15.038+02:00My Greatest Fear<div class="MsoNormal">
<br />
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: 12pt;"> We all
have our strengths and weaknesses, foibles and fears. I don’t like being in
confined spaces such as an MRI machine, and you’d never catch me paragliding or
bungee jumping. Snakes and slugs come high up on my list, but without doubt my
greatest fear of all is being unable to communicate.</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Thanks to
Parkinson’s I was hospitalised several times during 2017. Trapped in a body
that no longer responds to Parkinson medication, unable to swallow or speak, no
doctor or nurse could possibly ascertain if my cognitive skills remained
intact. Add into the equation that any anxiety or stress greatly exacerbate the
disease – and hey presto, my greatest fear of not being able to communicate in
any form was realised. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">As the
doctors made their morning rounds, I lay there in my hospital bed like some
distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I
couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above
my head.<br /><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">The
morning doctor’s rounds were not at the same time each day and not knowing when
they would appear made it very difficult for my husband to be there with me.
Over the years, my husband has taken an extraordinary amount of time off work
to care for me. Due to the severity of the “off” I was experiencing, I couldn’t
even use my mobile phone to call a family member or friend to step in as an
advocate to speak on my behalf.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Later in
the day when I was “on”, I wrote down all the questions I had wanted to ask the
doctor, along with pertinent details he didn’t know. Being a girl guide at
heart, with just a touch of OCD for good measure, I am very methodical and
super organized. I do my best to be prepared for every eventuality. The
following morning, I was again “off” as the doctors made their rounds, but I
managed to avert my eyes away from the captivating ceiling tile and locked eyes
with the doctors’ and he saw my notepad clutched tightly in my grasp. He read
my questions and comments out loud to his entourage. Through this limited form
of communication, at least it was now established that I had all my marbles!<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"><br /></span></div>
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<span lang="EN-US" style="font-family: "Arial",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ascii-theme-font: minor-bidi; mso-bidi-font-family: Arial; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">If you
ever find yourself in the situation of being unable to communicate, make sure
you have an advocate - someone to speak on your behalf who has your best
interests at heart. I can’t stress enough how important this is.</span></div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-78817944156188837472018-02-23T07:00:00.000+02:002018-02-23T08:11:41.982+02:00Angels Who Make House Calls<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I was not
living but surviving from one moment to the next. There is only so much that
the human body can endure, and I felt I was fast reaching a point where I could
take no more. The Social Worker </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;">assigned to me by
our Health Fund was visibly shocked at my deterioration, and so it was in my
darkest hour, she sent angels to ease my pain. Don’t worry, I wasn’t
hallucinating and most certainly haven’t lost my marbles! These angels were mere
mortals of course, just like you and me and bore no celestial wings. They did
however offer a heaven-sent service for patients in special circumstances, chronically
ill people who are better treated at home rather than being hospitalised or
sent to a hospice.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">I will
never forget the Social Worker who contacted our family doctor recommending I
receive pain relief at home immediately through this organization. Her compassion,
understanding and ability to quickly put things into action literally saved me,
and within hours a highly experienced professional team, consisting of a
doctor, a nurse and their own social worker arrived at our house. With their
expertise, they administered to my needs giving me a cocktail of narcotic drugs
that after weeks of suffering consistent unbearable pain, I eventually found
some relief. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">This was
one of those moments in life that I’ll always remember. I am so grateful to our
Social Worker for thinking of contacting them. So, the pain was now under
control, but this was no cure for Parkinson’s and we hadn’t really solved
anything. We had simply put a plaster on a gaping wound which bought us time,
while the disease continued out of control on its speeding journey. <o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">When
pushed to the very limits, the human spirit is stronger and more powerful than
we realise. My secret weapon was having something important to look forward to.
What could be more special, joyous and life affirming, than a wedding? And so,
it was the deep</span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11.0pt; line-height: 107%;"> </span><span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12.0pt; line-height: 107%;">unconditional
love of my husband, extraordinary closeness from my best friend and the
forthcoming wedding of our darling daughter to a young man we have grown very
fond of, that gave me reason to live and put up the fight of my life. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4645917165244450319.post-38526141674318417602018-02-16T07:00:00.000+02:002018-02-16T07:26:20.771+02:00Blogging Again!<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I stopped blogging for the simple reason, I was deteriorating at such an alarming speed, I thought who in their right mind would want to read this? Who would want to know what I was going through – not really living, but hanging on by my fingernails, surviving each painful long day and suffering hellish nights I thought would never end. My body no longer responded to my medications and Parkinson’s had turned into an unpredictable demon, sapping my energy and causing pain that ravished my body. Doctors and nurses had seen all-consuming pain and suffering in Cancer patients and other chronic disorders but had never treated a woman in her fifties with Parkinson’s and Gaucher in such a terrible advanced state. If there were such a thing as a </span><i style="font-family: Arial, sans-serif; font-size: 12pt;">‘pain scale’</i><span style="font-family: "arial" , sans-serif; font-size: 12pt;">, my reading would have been way off the charts.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;">I used to be a very fast typist, but now use one finger so it takes forever to type even the shortest of blogs. So please be patient as I recount the events that took place. What I will be writing is without doubt disturbing, and may be hard for you to read, but I urge you to read on, for there is a lot of information, should you need it that could prove helpful. I would like to remind you that I am not a doctor or have any medical training. I am merely a patient sharing my experiences and story with you.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;">I never really questioned anyone what the difference was between a 'Neurologist' and a 'Neurological Movement Disorder Specialist'. </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;">The term "movement disorders" refers to a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. A movement disorder specialist is a neurologist who has received additional training in Parkinson's disease (PD) and other movement disorders including Essential tremor (ET), dystonia, tics and tremors. </span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;">I had been going for 11 years to the same neurologist, who is highly regarded. It had never occurred to me that perhaps I should get a second opinion from a 'Neurological Movement Disorder Specialist'. </span><span style="font-family: "arial" , sans-serif;"><span style="font-size: 12pt;">You may be thinking “Well I know that” and in hindsight, I don’t know why this option was never explored. Foolish as I may now seem, to have not i</span>nquired<span style="font-size: 12pt;"> before, all I can say is “better late than never”. So, if you too, have not been seen by a Neurological Movement Disorder Specialist, it may be worth your while checking this out. You have nothing to lose and everything to gain.</span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;">My father who was a carrier of Gaucher disease, had PD. I also had a brother, who like myself, suffered from Gaucher disease and PD who died a few years ago.<span style="color: red;"> </span>From the time of diagnosis, my father and brother went downhill and passed away at an alarming speed, not only was this a shock to the family, but also the doctors. Although my family medical history did not bode well, I strongly believed my case would be different. My father and brother were pessimistic by nature, seeing the glass half empty, where as I am a very different character, always positive who sees the cup half full. I strongly believe that one’s outlook on life can have a remarkable effect on the severity and speed of progression.<o:p></o:p></span><br />
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;"><br /></span>
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: 12pt; line-height: 17.12px;">My husband has made coffee and beckoning me to the table, so I'll leave you for now and wish you good health and an enjoyable weekend.</span><br />
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Unknownnoreply@blogger.com0