Saturday, 16 January 2016

The Triumph of Hope over Experience

Yesterday I had my long (3 months) awaited appointment with the PD nurse.

Those of you who read my post on October 5th last year will know that the initial shock of the diagnosis was just a knee-jerk reaction and I fairly quickly decided not to go down the 'worst scenario' route.

Initially this was easy to do while I awaited the phone-call/letter from the PD nurse who, I was told, would be able to answer my questions.

Having first read the notes on Parkinson's provided by my GP I made a list of the main concerns I had.

As the weeks went by and my medication proved very effective in controlling the tremors (to the point where there were none - at least to my eyes), I became more concerned about long-term prospects.  Some of which had been high-lighted by the literature given me by the GP.

My consultation with the nurse yesterday was really worth the effort of first finding the obscure address of the place, and secondly the rather long walk to get there.  Only about a mile as the crow flies, but I ain't no crow!

She was friendly easy to talk to and very very reassuring.

Having put me through a series of physical tests she pronounced my symptoms 'minimal' and in essence convinced me that my current way of life and activity is likely to prove beneficial and is more than adequate to maintain a good level of health.

Confessing that my two greatest fears were the possible loss of my voice and the possibility of developing dementia. I asked her if continuing to sing would cause any escalation of the disease,
She assured me that on the contrary, the more I sang the less likely I was to suffer the loss of
throat muscle power.

Dementia as I think I said in my earlier post, is something which affects 50% of Parkinson's sufferers, but as both she and a friend pointed out, it also means that 50% of patients do not develop it.

Despite the freezing weather this morning I feel more up-beat and hopeful than for a very long time.

It was worth opening Pandora's box.

18 comments:

  1. Posts like this make the internet worthwhile. I take my hat off to you.

    ReplyDelete
    Replies
    1. Thank you so much Colin. What a lovely thing to say, but please don't take your hat off in this weather:-)

      Delete
  2. I agree with Colin. Well done Ray...anyone starting to experience symptoms will gain strength from this... More power to your voice!

    ReplyDelete
  3. Thanks Jean, I don't intend it to become a saga but if anything new (good or bad) occurs I will try to write about it in case it is of use to anyone else.
    Singing reasonably well at present.

    ReplyDelete
  4. I had missed your previous post Ray. I have often wondered how I would cope with a diagnosis such as this.

    Our local Parkinson's Society runs many activities. I joined when told that my husband had PD along with his Alzheimers and, when he went into care, continued to go with the walking group as extra support.

    Our local society has several groups - there is a singing group and you have mentioned your singing. There are also a couple of exercise group.

    I only go on the walks but do know that the PD sufferers gain a lot from the walks both from the exercise and from being able to talk to other PD sufferers.

    Good luck to you.

    ReplyDelete
  5. Thank you Heather. There are a lot of support groups here too, but at this stage I prefer to stick with my already quite full schedule of church activities.
    This gives me social and physical activity as well as spiritual support. Pretty good I'd say.

    ReplyDelete
  6. I am sorry to hear of your diagnosis but glad to hear you are taking a positive approach. Being positive and living your life to the full should be beneficial in all sorts of ways including limiting the effects of the condition I am sure. Thoughts and prayer are with you.

    ReplyDelete
  7. Thanks Sue, prayers and thoughts always welcome.
    The PD nurse seemed to think I was going about things in the best way so with her official sanction I will carry on as near normal for as long as possible.

    ReplyDelete
  8. Thats all good news ! Keep singing , such a gift .Love and continued Prayers from this outpost .

    ReplyDelete
  9. Good news indeed. The benefits of singing are perhaps more obvious to me than to others but, as long as nobody throws anything I'll continue.
    Love and prayers greatly appreciated.:-)

    ReplyDelete
  10. I don't know how I missed your original post, Ray, but I'm sorry to hear of your diagnosis which must have been a great shock. I'm so glad to read that the medication is working well and that the PD nurse was so reassuring and encouraging. Your way of life obviously works very well for you, so all good wishes as you go on going on. Love and prayers from Mid-Wales too. xx

    ReplyDelete
    Replies
    1. Many thanks Perpetua. It was a long wait to see her, but well worth the wait.
      It is quite easy to frighten yourself to death if you read all the literature, or worse, go online to research illness.

      Delete
  11. I am so pleased to hear you sounding so positive. Your nurse sounds brilliant. Lots of happy and positive thoughts from me. J.

    ReplyDelete
    Replies
    1. Thank you Janice. It seems the only way to react really. Meeting trouble half-way is a waste of energy.

      Delete
  12. And I am certain that blogging is a good way to cope with PD. Well done for being so positive. Every Blessing

    ReplyDelete
  13. You're right Freda, blogging has long been my way of letting some daylight into my woes.
    Seeing what you have written in print makes you think positively despite your natural reservations.
    Blessings appreciated.

    ReplyDelete
  14. You go, girl! I am happy for you that you are dealing with this in such a positive way. The world needs people who are doing what they are passionate about, and clearing singing is yours. Blessings and peace.

    ReplyDelete
  15. Well. I'm not sure about the world, but life assumes a brighter colour when you have an interest even in a small way and the brighter the outlook the better you feel.
    Thanks for the blessings Penny.

    ReplyDelete