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Four months on ……

It is now 4 months since I heard those memorable words -“you have a dystonic presentation of Parkinson’s”.
I was thinking about what changes there have been, mostly creeping up so slowly that it is hardly noticeable for a while but nevertheless still there, some strange ones too!
The most annoying one is the aching neck and the rigidity across my shoulders which affects my left hand too. I have looked on the internet for neck exercises, not much choice there so I am adding them into my daily routine, any top tips gratefully received. Cold weather doesn’t help so last night’s sudden heavy snowfall after a few warm and sunny days wasn’t welcome, but it looked so pretty.

A balmy March day ...

A balmy March day …

.... a few days later - snow!

…. a few days later – snow!

A rather wacky assortment of quirky new things includes something funny going on with my eyelids and two crampy toes on one foot. As a lady who likes to shop I have to be careful when trying jeans on that I don’t overbalance. Separating eggs is a bit hit and miss, must make sure that I always have a few spare ones!
Overall though I still feel pretty good and can carry on as normal, so lucky to have a supportive lot of folk around me.
We were told by the Parkinson’s Nurse that I have to notify the driving licence folk (DVLA) about the condition, hopefully it’s just a formality. We were staggered at the number of medical conditions that are notifiable – well over 100. We completed and sent off the forms and they write to the Nurse and Consultant. After a month I have had a letter to say that they were expecting a reply from the Consultant in the next 6 weeks, what a long time!
As part of the “getting on with life” plan we have booked to go to New York in the summer, travelling both ways on the QM2 and then 5 days in the Big Apple, yippee, sounds fantastic.
I have also booked a week around St Ives in September with my walking group exploring an area much loved by my Mum, should be fine, I think.
Best foot forward then….

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6 thoughts on “Four months on ……

  1. Elspeth, you are coping admirably and the trips sound fantastic but the aches and pains don’t. I am not too sure that even though fit, my egg separation would be any better than yours as according to Maggie, I must have been born completely dysfunctional. Maybe I can give you some tips on how to cope.
    I discovered that our neighbour has the same condition as you but he is five years on and seems to be coping very well. When I questioned him about his exercise regime he said he should do it but doesn’t so I offered to walk him 5 miles a day. He turned me down!
    Take care and we will meet for lunch soon. Tell Peter that today Maggie had lunch at the Grumpy Mole (not dissimilar to what she calls me) at Brockham, which she said was very good. We could meet there when the weather improves.

    Take good care and we send our love,

    Nick and Maggie

  2. Hi Mum, Sounds like you’re annual trips to Australia should extend Jan-Mar….it’s still over 30 here! Lau xx

  3. Hi Elspeth. It was good to read your update and it was great to see you and Peter here recently. Your positive approach is an inspiration to us all and you certainly hide your symptoms so well. We both thought you looked radiant and very well. We think Laura’s suggestion is a great idea . Perhaps you should come with us next week – I am sure Stuart and Bronnie would love to see you at their wedding and it would only then be a short hop to Melbourne!

    Will look forward to seeing you again very soon. Love Elizabeth and Ken xx

  4. Hi Elspeth, I love your blog. You really have taken so much care over it and I have no doubt it will inspire so many people. I really wouldn’t worry about a thing, though. At no point, whatever happens, will Ali be able to beat you at badminton. Rest assured; it’s a near impossibility, but should it ever happen, I shall just declare the result void. Love, Ben xx

  5. Hello Elspeth, My daughter Flora passed on your blog via Laura and I was interested to read of your progress with PD, after our phone conversation in Melbourne. It’s such an idiosyncratic disease and everyone has such different yet common experiences. The twitches that come and go, the arm that wont swing – I wont go on and on! I keep puttiing off submitting my medical report to the driving licence people here but I know I should. I have just had a trip to Perth to visit family and found the 3 hour time difference a bit difficult to juggle with my medication. Love the sound of your trip to NY on the QM2. We watched it come down the Swan river and dock at Freemantle, Perth’s port, last week. What a juggle that was. Great that you are swimming, walking and doing exercises. I have just started Tai Chi and a Feldenkrais physio together with walking. I know I should be swimming too. All the best, Moya

  6. Hi Elspeth just signed up to ‘follow you wherever you may go’. You are doing so well, but then you have so much character that I wouldn’t expect anything less from you. Keep up the good work we still have so many things to do – LWL and all that that entails!!! also the extramural activities!!! Always looking for new ideas. With you always. Charles and Felicity

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