10 months post diagnosis


#1

I know in starting to document my personal experience, I probably seem like I'm one of the lucky ones: I'm a Mummy to 3 beautiful children, I have a wonderful relationship with my husband of 13 years, a supportive family and a good job, working in London for a well known investment bank. I went into 2013 hopeful; we'd recently moved house and were planning renovations, I'd got a good promotion at work and it felt like everything was on track....

I do remember feeling exhausted and I mean 'can't keep my eyes open' exhausted. A lethargy consumed me, that no amount of sleep could assist with and it became difficult to concentrate on anything or engage with my social circles frequently. I was always so god damn tired. My days seemed to consist of getting up, going to work, getting home and promptly falling asleep on the sofa. I guess at the time, whilst I was aware that this was unusual for me, I thought the phase would pass and it was overly indulgent, after all what mother doesn't feel utterly exhausted most of the time?

Then in March 2013, I started to develop a tremor in my hand, slight at first, so only I noticed it: There was also a loss of fine motor movement; brushing my teeth, putting on my moisturiser in the morning...barely distinguishable to most. Though it was certainly a good joke with work colleagues, demonstrating my inability to do 'jazz hands', it was only when the tremor seemed to progress approximately 6 months later, that I sought the help of a neurologist via the GP. After an initial assessment he thought I had a trapped ulnar nerve and asked me to have some nerve conduction tests. I never actually got that far; other things take priority and it was never immediately a problem. I told myself it was stress.

At this point, my relationship with my husband was at an all time low: my inability to have any focus outside of the essentials of daily living was affecting our lives; we both acknowledge this now but I guess when you're in the 'eye of the storm' you can struggle to see what's in front of you. I guess my point in sharing this information is that it's easy to focus on the needs of those affected but these situations have far reaching, systemic implications that require time, love and attention.

The tremor continued to get worse until it consumed my arm and was entirely visible; to the point where colleagues and team members thought I was nervous, which has never really been an issue for me but I wouldn't have blamed others if they'd started to question my ability to perform my job well.

It was only when it progressed to my leg, that I suddenly thought that it really needed some attention. I found myself referred some weeks later back to a neurologist: he asked me to perform some movement activities, those, which I'm sure most of you will be all too familiar with. He asked me to have a Head CT and a blood test both of which came back fine. Interestingly, he told me I had a rather lovely brain; a fact I'm quite proud of! It was then he mentioned Parkinson's. I was dumbfounded; my only interaction with Parkinson's suffers had been elderly relatives at that juncture.

I went home and did what everyone does: Googled everything I possibly could about the disease. I'd say I'm a reasonably pragmatic person; even though many of the symptoms described struck a chord with me, I convinced myself that a Parkinson's diagnoses was improbable.

The consultant duly sent me off for a DAT scan, which took place 4 days later. I then had a follow up in his office 2 days after this. All I can really remember are his words 'findings are consistent with a diagnosis of Parkinsons'. I've been informed that we talked for a good 20 minutes thereafter, although all I can recall is trying to contain my tremor, which had gone into overdrive!

I was put onto Madopar that day and titrated up to my therapeutic dose over the following weeks. The medication took a while to settle in but has really helped.

I decided to keep things relatively private at first whilst I dealt with the news, telling only my parents, my manager and a handful of close friends. They have all been wonderful, albeit concerned. I think the hardest thing for me, was trying to explain there really isn't any typical prognosis. I too, find this hard to accept, though I'm not really sure why: You never know what's round the corner, whoever you are, whatever your personal circumstances.

Eventually after learning all I could, I told my wider community. People handle and compute situations like this in different ways; some friends have never mentioned it to me directly, some are continually asking how I am. I prefer a direct approach but each to their own.

So how are things now, nearly 10 months on? I'm really, truly doing okay. I have good days and bad days but who doesn't, progressive neurological conditions aside. Work have been incredibly supportive and my family have been my rock. My children give me something to smile about every day.

A lot of information and research out there in the ether, centres on a 'typical' Parkinson's patient, which I am not. Sources like Parkinsons UK are vitally important to people like me; despite being a 'lurker' rather than someone who actively contributes most of the time. It helps to feel as though you're not alone and contextualise what you're going through. I often hear the description of Parkinson's as a 'boutique' disease and this is largely true. Each persons journey is different but even so, it's good to have a community of people to draw support and advice from.

What advice would I give to someone who might be in my situation?

Don't ignore what's happening, if you need help - seek it and be honest with others if you're struggling; you'd be surprised at the reaction of most and one of my favourite sayings has always been 'those who mind don't matter, those who matter don't mind'.


Don't sweat the small stuff; you can't control everything - that's life and in this regard you're no different to anyone else - prioritise your valuable  time and energy on the things that really matter and take each day as it comes, celebrating successes, no matter how small.

This advice all sounds very philosophical and on a more practical level, I would advocate getting informed about your condition, taking your medication when you're meant to and cutting yourself some slack on bad days, they soon pass.

Finally, to anyone reading this, thank you for listening. I don't know your personal circumstances or the journey that led you here but I will say and I borrow a phrase, whoever you are, whatever your journey, YOU were given this life because YOU are strong enough to live it x


#2

Hello Kerri77

Welcome and thanks for sharing your story. 

I was diagnosed April 2012 age 51. 

I work full time in NHS, and thought I was too young for this. I am  however retiring in November, so perhaps  not that young. 

I see myself as early in the Parkinson's journey, but get a lot of support from this forum and my local branch n Aberdeen.  

Take care and I look forward  reading more posts from you. 

 


#3

Hello Bethankit,

Nice to meet you.

How have you found things 3 years on? Much deterioration? I think that's the thing that makes me the most nervous.... I just don't know how thing are going to progress but I'm learning to take each day as it comes!

Do you get a lot of support and understanding from your employer?

K x

 

 

 

 


#4

 

Hi Kerrie 77

Welcome also and for sharing your story

I was diagnosed in 2011 ( I had symptoms in 2010) aged 58, it takes a little while to accept the diagnosis when you are told. I refused meds at first but then gave in in 2012 when my PD had progressed, the difference in taking the medication was  unbelievable.

Hope you do well in your journey with PD, we are all different with a range of symptoms but we all take it in our stride, if you ever have any questions to ask you will find help on this forum from other members

Take care Sheffy


#5

 

Hi and Welcome Kerrie


Your story sounds a familiar one & you sound like your doing well, Technology is a wonderful thing in this day and age, it comes along so fast now, we all live in hope that a ground breaking treatment or cure isn't far away.


#6

Hi 

I don't think there has been much deterioration to see, but  I do get very tired. My employers have been ad continue to be supportive and understanding. I have regular reviews in OHS which is helpful for both me and y manager. At times I have required work  hours adjusted. 

At home I have a very caring husband. 

I think taking each day as it comes is a good strategy, and you will discover for yourself any changes you need to make, and if you discover you are having a particular issue , the answer can usually be found here.  


#7

Thanks all for the welcome! It's good to be in touch. X


#8

Welcome and thank you for sharing your story


#9

welcome kerrie77 you can get so much support from this members of this site and from your local support group you will never be alone on our PD journey. 

 

bb


#10

Have not been on here in a while so welcome