Hiya everyone! Can type, will type :)


#1

Well hello there everyone!

I joined this forum some time ago, and have read the majority of the threads and posts over the course of my infrequent visits. However, due to my tremor, I haven't been able to type well enough to contribute...until now! big grin

What a lovely and interesting bunch you all are, and I have found your experiences both helpful and comforting when I have been here looking for 'someone in my shoes' type information.

That's enough about you, hee hee! About me...I'm 47, so I like to think I'm a YPWP. I've had symptoms since the year 2000, and despite a strong family history of PD, I was originally diagnosed with Benign Essential Tremor, in 2005. In 2013, following a DAT scan, I was given the PD diagnosis (which I had guessed years before). My PD is familial, and tremor-dominant.

I'm a mum of 3, single, had to retire from work last year, and although I've been medicated with Ropinirole and the later addition of Madopar, symptom control has been slow and difficult.

In my local area, I had fantastic support initially from the PD nurse, a lady from PD UK, a physio, an OT, and a Social Worker. Yes, I have been so fortunate, and no doubt a beneficiary of the 'postcode lottery'!

Currently, I only have Neuro appointments, and am just 'getting on with it'. I have found it hard to adjust from being in a fairly stressful full-time NHS post, to being something of a hermit. I barely left the house in about 18 months, mainly due to very poor mobility (shuffling, slowness, poor balance, stiffness, tremor, muscular pain) but have recently been feeling improved enough to venture out. 

I still feel pretty brain-dead most days due to lack of stimulation, and dare I say it, lack of stress! Other than my adult children, I don't have contact with family members. I do have some wonderful friends, who have seen me through some very dark days.

Fortunately for my friends, they don't have PD! So I'm hopeful of making some new compadres here!. I appreciate the huge understanding and wealth of PD experience that the posters have, whether they themselves have PD, or are caring for someone who does.

Jings, I've been rambling on a bit, haha! Am quite enjoying being able to type again though (maybe best not speak too soon though eek )

I hope if you're reading this, that you are having a good day, and if not, on those days, I always remind myself 'This too, will pass'.

Hoping to be able to make some useful or interesting contributions to your topics here :D

Lang may 'yer lum reek

Hyper

x


#2

Welcome back, Hyper! 

You have a very personable, engaging manner of writing.  I'm sure you will be a great addition to the forum's discussions.  And it's good news that you are beginning to regain confidence enough to go out into the world again.  I find that I forget about my PD and move faster and accomplish more when I see to it that I get out of the house often.  Now that the spring weather here (I'm in Oregon) is so inviting, I shall probably be going out daily!

Best wishes,

J


#3

Well hi there Hyper

 You sound like a nicely unbalanced bundle of fun tee hee hee....................just the type of person who would enjoy the never ending story part duex over in creative corner.....so come pay a visit .

Im 58. DX June last year but probably had parki 5 years before then been an HGV mechanic for 35 years or so  .......hummmmm that's about it I think .................O yes I'm married grownup kids etcetera etcetera 

anyway hi again must dash .............I wish  

  Live well.  Cc


#4

Hiya J big grin

Many thanks for your reply. I have read many of your posts, and I like your style of writing too! I'm just back from a walk to my local mini supermarket, feeling sore and drained, but my hair smells of fresh air, which is nice!

Unlike you, I find the more I go out, the more I am reminded of my PD - people staring, me being conscious of my odd gait, grimaces of pain (usually accompanied by wee grunts or me encouraging myself out loud), and bumping into people I've not seen in an age, who wonder 'What happened to you?'.

Still, it's good for the soul, to see the sky, smell the plants and trees, and feel the wind on your face, eh? Tonight I was accosted by a large and very gorgeous German Shepherd, which I had met before. Very ferocious bark and I dodged being knocked over, hee hee. I usually greet all dogs and people I pass. The dogs are always more friendly big grin

I shall have to Google your homeplace, see what's in Oregon. I love information gathering, but I'm crap at geography!

 

Take care for now

H


#5

Hello again!

Geography was never my strength either.  And 50 states are far too many for people to learn about one by one.  I'm fairly new to Oregon myself, having moved here with my husband in 2007.  Prior to that I lived in California 52 years.  But Oregon's tourist-attracting areas are the Pacific coast, which is lined with a good number of charming small towns, and the Columbia River Gorge, which boasts several beautiful waterfalls and lovely distant views from lookout points and high trails.

I live in a suburb of Portland, the largest but not the capital city.  (That's Salem.)  Our climate here is said to be nearly identical to the climate in southern England or northern France.  It's great for gardening, one of my pastimes, but a bit too rainy for many people's taste.  Our state is the butt of a lot of rain jokes, in fact, yet I prefer its coolness to the heat of California.  When my husband died almost three years ago, I thought about returning to California and all my oldest friends.  It just wasn't as appealing as my new home and friends here, though, where I am also closer to my son and his family.

I understand your self-consciousness about going out.  Because my symptoms are barely noticeable, I have an easier time than most PD patients.  So far, that is.  I know there are more challenging times ahead.

J


#6

Hi Hyper, 

Your post put a smile on my face, your style of writing is infact a breath of fresh air lol, you seem like a lovely person. I can see why you're hyper, being able to use your hands at a decent speed.

I'm Tracey btw, I'm 35 and was diagnosed when I was 26 

I lost my sense of smell so therefore, although I go out a lot, I'm unable to smell all those beautiful smells....unless its petrol or paint, anything strong and potent lol it would be lovely to smell fresh cut grass or flowers, just to be able to smell something sweet