My Blog - The Diary of a Daughter and Carer - Hope Vs Reality

Everyone has it don't they? A point or phase in your life when you feel like you are just waiting for something to happen. My list of things waiting to happen is long. For example my husband just emailed me a list of files he had found on his computer...it's a list of all the ideas I have for various different novels and short stories (does not include Ping and Pong or Scarlet Reed and The Secret of Mullion Cove). There are 14 ideas on this list. When am I ever going to get the time to follow these through!?But then, what am I waiting for?

There are also various things I'm waiting for with regard to Ping and Pong - I can't tell you much about it at the moment only that if it comes off the result will be life changing for me. But because of Dads illness I feel like I'm in a rush to do it all now. So that he can see before the inevitable happens. This feeling of being on edge continues into my personal life too - I'm desperate for him to see a grandchild and feel cheated that we lost a baby before he got a chance to enjoy it, and as time goes on it seems more unlikely that he will enjoy it for a long period of time. This feeling for me results in my nerves being heightened and my emotions seem 100% more sensitive. Our lives revolve around waiting, and I feel I can't truly relax. We are constantly waiting for something to happen to him; what will it be? Lungs? Heart? A fall? This is horrible, but true. I try so hard to handle it the best I can but sometimes I struggle. Sometimes I'm quite hard on myself (wont surprise you if you know me well) I try to look after myself and get on with things but to be honest occasionally I want to stay in bed all day and cry until there are no tears left in my body. I normally quite good at picking myself back up and only I can do that, I can't rely on other people to get into my head and make it better.

The thing that snaps me out of it of is Dad and what he would say if I told him what was on my mind. I try to think about what he would say if he was an outsider looking in. He'd say Amy Louise Clifton get on with things will you! But, I'm in a constant battle with myself - positive vs negative, hope vs reality - it's a horrible place to be I can tell you. Each day is different with one feeling often winning over the other, never settled. I try to enjoy the positive days, it's the only thing to do isn't it? Getting that balance is really tough, most days I have an underlying feeling of sadness with regard to Dad - I'm lucky that I have lots of other things to think about but sometimes I would quite like hope and positive to kick the ass of negative and reality.......

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  • Some people might think Im crazy or some may think Im unwilling to face the 'reality' of my Mum's situation (she has PSP) but I believe my Mum can recover and get well. I know Parkinsons is a different illness, but having done some research on the internet, it seems there are people recovering from Parkinsons these days. I hold a very positive view that my Mum can recover, though obviously she is not just sitting back and waiting for a miracle, she has been doing many of the things that people in recovery from Parkinsons are doing. Its early days, she has really only been trying out new things in the last few weeks, but already there has been some improvement in some areas. I think my Mum herself is coming to believe that maybe, just maybe, recovery is possible, and whether or not this is true, at the very least she is happier than she was when she believed that decline was inevitable.

    God bless,

    Andrew

  • hi andrew

    what sort of thing shas your mum been doing to (hopefully) improve her health?

    i should like to know

    jill

  • Hi Jill,

    Theres a lot of stuff we've been doing, and I honestly think that my Mum had to get to a certain stage of the illness before she was willing to commit to making the changes she has been making because its not always easy changing habits of a lifetime. I think she got to a point where the symptoms had intensified so much that she felt that she had little to lose by throwing herself into a new lifestyle. Some of the therapies she is doing now she has done in the past at different points, but I think that for recovery to be a possibility for my Mum, it probably requires more than just doing one or two things a week....I think it requires doing really positive stuff every day. I will tell you some of the stuff that she has been doing but I think its also worth having a look at these two websites....

    parkinsonsrecoveryprogram.c...

    pioneersofrecovery.com/

    I come from a complimentary medicine background myself so what they are saying on those websites isnt new to me, but it was certainly useful to show my Mum because I feel that if recovery is going to happen (while there is no medical cure), there has to be some kind of openness to the possibility of recovery. So a big change for my Mum has been in her thinking. She is no longer fighting the decline so much as working at getting well, and they are 2 quite different things. I cant underestimate the value in thinking in a positive way, which isnt always easy given that the very name of the illness tells us that things can only get worse instead of better!

    I will list some of the things she has been doing. She has changed her diet and no longer eats red meat. She is also drinking more water. She has been doing yoga, Bowen Therapy, BodyTalk, EFT and I am trained in NLP, so I have been doing lots of that with her. In a months time she will probably be doing different therapies as her situation changes, for example I think the Bowen Therapy will have run its course soon and she is starting the Alexander Technique next week. She meditates pretty much every day and listens to a hypnotherapy cd at night. She takes Bach Flower Remedies (currently Agrimony, Vervain and Gentian). From what I have read in the short time I have been on the forum, I think many people with PSP would benefit from Vervain. She has also received a few 'distance healings' from energy healers and spiritual healers that I would recommend...they work at a very reasonable rate. She also does vizualization every day at some point, and this I think is a very helpful thing to do which doesnt take much time or effort. We also have a geopathic stress protector in the house now which plugs into the wall, and I think it is making a difference to her strength and vitality. If it was practical I think my Mum would also do Neuro-feedback, but its just not possible for her to do that right now, but its well worth investigating I think.

    A couple of books I would recommend to anyone are these. The first is ''Conscious Medicine'' by Gill Edwards. The second is....''How your mind can heal your body'' by David Hamilton. There are many others which are fantastic too, a classic is ''You can heal your life'' by Louise Hay. Deepak Chopra has written some great books recently on health too. I highly recommend these books for the carers out there too. My Mum has not and cannot read these books (her eyesight is poor) but I read her sections from the book which I think are relevant for her.

    If I remember correctly from your other message Jill, you said you were doing Tai Chi. Thats a great thing to be doing.

    My Mum begins the dauventine trial soon so hopefully that will also make a difference. In the meantime, she will continue to do what she has been doing. Fingers crossed.

    Hope that helps, I am happy to talk more but kind of feel that Ive said enough for now!

    Andrew

  • Hi Jill.

    Just to add something I forgot. I also think detoxing is important, particularly making sure that the body is clear of heavy metals, I have heard good reports of Zeolite...we are looking at getting that ourselves. An alkaline diet is also part of detoxing.

  • hi andrew

    thanks for your long reply

    i have looked at the first internet site and many of John Cs probelms ae mine too so it is worth takign a closer look at - as long as it does not cost anything!

    jill

  • Right. Im not sure they are worth paying for either when there are a lot of other books available that talk about the kinds of things that they are are talking about and which are probably available at a local library. Take care,

    Andrew

  • hi Amy

    you have a very diffiuclt situation watching your dad with this psp.

    But he has it and it has made you so aware that time with him is precious - does he feel as negative about it as you , do you think?

    jill x

  • Oh how I know where you're coming from Amy. My husband has PSP, diagnosed last year and life is almost impossible, very frustrating and caring is a thankless task. I'm sorry everyone if I sound negative but everything I do for my husband at the moment is wrong, as far as he's concerned I can't do right for doing wrong. I tell myself he can't help it but he has always been a very demanding person. We are both in our seventies and not much to look forward to.

    dorothy-thompson

  • Dorothy, I know what you mean and Im sure my Mum would agree with you too..PSP takes a part of them away and that is so hard to accept. Its equally as hard to remain positive but hang on in there...we are in this together xxxxxxxx

  • Thanks Amy, you're right of course and who said life would be easy?!!

    And on a more positive note, my husband is still upright and reasonably mobile, he eats and sleeps well, I get lots of informative feed back from all the blogs, things I would never learn about by myself, my husband is starting on the davenutide trials next month and we are probably going to see our son and family in New Zealand for Christmas.

    Oh what a difference an hour makes !!

    xxxxxxxxxxxxx

  • Good, Im glad! Things do change so quickly and you never know what may happen!? XXXX

  • Amy Louise Clifton, get on and do what you have to do! ;)

    Your dad will always be with you. He'd want you to have the best life you can have and achieve all that you can.

    Make your plans. Cry when you need to cry. Moan at us when you need to You're missing your dad already, and the future you'd hoped for.

    When you have him here, tell him your plans and hold him tight. Celebrate the good days.

    Sorry, I seem to have turned even bossier the last few weeks! It's the grief; I'll be quiet and timid again eventually :)

  • I could have written this reply myself - all a of a sudden they are gone and you cant tell them you love them or cuddle them when you want - I go with what Fiona has said - pleeeease make trhe most of them while they are around because one day they wont be and even though you are expecting it you will never fail to be shocked xx

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