Thursday, November 5, 2009

Pillar to post

It is not Multiple Sclerosis, although it has symptoms of MS. Is is not Meniere's, although it has symptoms of Meniere's. It is not Parkinsonsm although it has symptoms of Parkinsons. It is most definitely Peripheral Neuropathy, of both the motor and sensory variety.

In the fall that I took on October 7th I lost consciousness. This does not happen when an MS sufferer falls nor when a Meniere's attack occurs. I did have vertigo and I did spend the evening dry retching. I spent the next two days at Royal Prince Alfred Hospital (RPA) having both cardiac and neurologic assessments. The raised troponin levels (CPK) were symptomatic of an impending heart attack. But they are also raised when a seisure has occurred. All the muscles at the base of the buttock and down the back of both legs were frozen and took about 24 hours to relax back to normal. Prior to the fall I had the whirling and the flashing in the top RH quadrant which are indicative of vertigo which is a massive aspect of Meniere's.

I returned to work for another 8 days and then the second episode occurred. My son, who was with me organised the ambulance and I was in RPA for four days. I underwent two cardiac procedures: an Angiogram and an Electro-psysiology Study (EPS). The EPS found a wayward electrical beat in my heart and cauterized it. Not too unusual, occurring in about 10% of the population. Extraneous to the other symptoms. The Angiogram indicated that I had a strong heart with minimal heart disease. All this was good. But why was my blood pressure measured in the ambulance at 60/40 and why did it consistently read low during the hospital stay? And if my BP was low, why was I taking 20mg of Coversyl each morning!

Yesterday, I saw the cardiologist again. He is convinced it is not cardiac. But he is leading the holistic team that is nibbling around the symptoms and the test results to try to make sense of the data. With the balance, the gait and the vision problems, he has now suggested an opthalmologist join the team. I have diplopia in the left eye extensively and a little in the right. He could not see nystagmus but the week prior both the neurologists could see this in both eyes.

The extensive testing from the Brain and Mind Institute (BMI) that I underwent during 2008 is available to this new team. This includes many nerve induction tests, a complete body x-ray (13 in all) and a number of MRIs of the head and chest.

I have difficulty determining if the information coming from my eyes to my brain is correct and have to think through crossing the road. It is a bit like a mirage down the other end of the street. I have trouble determining depth when I take a step and am hesitant to put my foot down too firmly. Know when you step off only to realise that there was no further step to negotiate. Imagine that with every other step you take. My balance on the LHS is wonky and I diverge to that side and sometimes have difficulty bringing myself upright again. My friends have convinced my to purchase a walking stick to have with me in my backpack - for rough ground. I now always accept the proffered arm.

The rules are: reduce stress; no driving; stairs with balaustrades only; more sleep; better nutrition; reduce alcohol; wear a hat and reduce heat; and, the hardest one, don't live by myself.

I am staying with my daughter for three weeks. Although I only moved into a new cottage two months ago, I am breaking the lease and moving to another place which is 5 minutes drive from Kirsten and has no internal stairs. It is also on a bus line (the 389) and about 100m from my father's nursing home. Living with Kirsten I am developing better patterns of sleeping, eating and drinking that I will be able to take to the new place with me. Kirsten has both the car and the car keys (for a while I had known that when I stopped the car and opened the door to get out, the bitumen was still moving).

Tomorrow, Friday 6th November, I retire from my job at the university after two weeks sick leave. The job was an experiment which to me did not work. The reports and systems that I created were not used by any of the academics they were created for. I was doing work that was not appreciated and there was never enough of it. This is immensely stressful. Both my children suggested that I stop even though my retirement age (as calculated by the government) was 64. One of my tasks this week is to set up a flexi-pension from my superannuation fund.

I will post this and reread it as the day progresses, adding anything that I think rounds the story out.

How do I feel? Nervous. Apprehensive. Pleased. Positive, perhaps.

My daughter sent me an article called "Diversify Yourself" by Peter Bregman.


Ann said...

Sh*t! I don't know what to say to this. In parts I found myself saying "thats good news" and than "thats not good". Hopefully reducing the stress and settling into a new lifestyle will help ease the other symptoms.

PS There's no shame in using a walking stick, I use one from time to time on really, really bad days - it always gets you a seat on the train. Mind you I'm still trying to get this through to my mother who badly needs to use hers and won't most of the time. There must be some kind of walking stick that doubles as a monopod for the camera.

Julie said...

You had me burst out loud laughing. I must look into that monopod-for-the-camera contraption!!

The whole story is wierd. There is good stuff (the heart) and there is crook stuff (falling over). But I console myself with the fact that I DO GET WARNING. Just that up until now, I have ignored warnings and told myself to soldier through.

Pig-headed and obstinant. Nah ...

Need to expand upon the peripheral neuropathy stuff and the MRI stuff but was zonked after that first little tirade.

However, I have now walked up a hill and caught a train to BJ and back. Feel quite chuffed.

Joan Elizabeth said...

Thanks for the detailed update ... not good. You are so "diversified" I can see you enjoying retirement once the shock, fear and resettling is over ... even amongst this turmoil you are adding great poetry to great pics over at Sydney Eye.

When I go bushwalking I carry a stick. I have looked at monopod thingies a few times but after a quick glance nothing has seem satisfactory. Peter has a monopod but I seem to remember that the type he has is a bit big and heavy to double as a walking stick. He might be able to offer some advice though.

freefalling said...

Geez - you've been through the ringer.
Glad you up-dated us - I've been thinking of you every day and wondering how you are going.

Now I'll tell you my relevant story.
You know that bloke in that photo on Poof with the bride in the purple dress?
Well, he's in his 50's and last year he got some weird thing that at first was thought to be MS or a stroke. Couldn't walk straight, see straight, talk properly - wasn't allowed to drive or be by himself.
He was poked, prodded, drained of litres of blood.
Best guess - a weird unidentifiable virus.
Time healed him.
It's been about a year.
He's not quite the same on his feet but you would never know unless you knew him before.

Maybe you caught it off him.

I finished at my job this week too!
I needed more time for stuffing around.
Stuffing around is the best.
Hope you embrace the "stuff around".

Julie said...

Joan: That is an interesting column about 'diversification" isn't it? Some doors close so I will open others. The poetry seems to be coming readily this week, which funnily enough, I attribute to the turmoil. It is mostly of a similar vein: harking back to the past, caring for the hurting core within people. Fairly predictable stuff given the current situation. I shall ask Pierre once he is back on home turf. Golly he has taken some beaut shots of canals. I have one that he is going to give me a better version of to put on canvas for Kirsten.

Julie said...

Letty: Sounds familiar. My speech has not been affected though. I will try to detail the peripheral neuropathy today too as that is a major component. Talk about losing litres of blood: I have elasto tape marks all over me that I struggle to remove!

It would not surprise me if this boils down to a virus, meaning the quacks have NFI. I have had the PN for about 20 years and the response is often a raised eyebrow!

Well, wuhoo, to you too! Stopping work to stuff around sounds like a good move. My kids are more convinced of this than I am, although I expect to get the hang of it more once the super-pension is flowing and I am back in my own place with all my own junk.

I want to go to junk yards and find some of those planter hanger things like at your front door. But I want 'em for 5 bucks, of course. Must learn how to use e-bay. And read through Kirsten's backlog of Ny'rs. And walk down to the Verona to see a filum twice a week DURING THE DAYLIGHT!

altadenahiker said...

One of the many things I love about you is your pragmatism. (You know, if you took up ceramics you could make some of your own planter hanger things right quick.)

Z said...

Oh Julie, you'll be in my thoughts. I hope things look up some more soon.

Best wishes from Villigen!

Martina said...

Huhuhummm. All the best, hm?

My English fails me to express all the thoughts I had while reading your posting, so forgive me for not saying much except I do hope things will get better soon.

Retirement might be not so bad, really, from what you said about your university job. Non-appreciation of the things we do is a huge stress factor.

Julie said...

AH, Z & Martina: Thank you for your visit and your kind (and encouraging) words. I had lunch with a good friend yesterday who is undergoing chemo after bowel cancer surgery. It is instructive to keep problems in perspective.

Stress is a wierd thing. I was stressed from not having enough to do and not be involved. Up until now, I had only considered stress a danger if OVER involvement and over expectation was involved. Now I know better.

Martina said...

Hm, someone I appreciate very much some years (eh, decades) ago said to me: The worst thing that can happen to someone is to be not challenged.

I think he was right. Not to be involved, not having much to do, ... that is stressful.

I am thinking of you and wishing you all the best - from the other side of the world, ;-).

Dutchcloggie said...

Crickey! I am supposed to be all eloquent and such but all I can think of is how much all this sucks!

Especially so shortly after having your nice new place. It will be quite an adjustment to live with Kirsten for a while. I like that you have been told not to live on your own and interpret that as '5 minutes from Kirsten'. Very you :-)

Hopefully things will calm down after some quiet, stress-free time. I know how stressful it is to do a job you don't like. In that sense, retirement is probably a good idea.

Sending you positive vibes!