Friday, 22 November 2019

Please Help my Granddaughter Amy Walk Again.

I would like to remind anyone who reads this, about the state of my poor granddaughter, Amy Pohl.  She had a brilliant career ahead of her before she was struck down by the most debilitating of diseases for which there seems little chance of a cure.  But Amy is a real fighter and determined to get well and that is why I'm posting this again, in the hope of maintaining her ongoing treatment at STEPS.

Amy left Winchester University with a first class honours degree in primary education.  But as she was entering her 3rd year of teaching at Rugby Free primary School, in December 2017, something happened that changed Amy's  life dramatically.

From a failed cannula in her left hand, inserted to provide routine treatment for a nasty cough (adult croup) she developed Complex Regional Pain Syndrome (CRPS) and subsequently Functional Neurological Disease (FND).

Amy has spent the majority of her time since then in hospital, recently in a neurological ward at University Hospital Coventry and Warwickshire (UHCW).  She has no use in her left hand and suffers constant pain in that arm, neither can she use her legs.  She is unable to sit unsupported, and suffers from Post Traumatic Distress Disorder (PTSD) too.

UHCW was unable to offer any treatment other than maintaining her general health, but the side effects of her illness have caused her condition to deteriorate and without specialist care would continue to do so.

Following extensive research by everyone in the family it was decided that a new clinic which had opened a couple of years earlier might be able to offer Amy a chance to recover and she was transferred to STEPS Rehabilitation, Sheffield.  It looks as though it will prove to be a turning point in her path towards recovery.  This transfer was made possible by some limited Government funding thanks to huge pressure from Amy's family and her local Member of Parliament (MP) Mark Pawsey.

STEPS provides a very comprehensive treatment regime 7 days a week and Amy is making steady progress. It is clear, however, that this is just the start of a long journey and at over £5000 per week, it certainly isn't cheap.

I started Amy's crowdfunding page to try to raise enough funds to pay for Amy's treatment and it has almost reached its target of £40,000. So many people have kindly donated money and we cannot sufficiently express our gratitude, but of course the money raised so far will run out before Amy's treatment has allowed her to stand by herself and walk again, so we implore all who read this to donate to her fund or share the campaign via your social media accounts.

Our daughter, Jo, (Amy's mother), was diagnosed with cancer (stage 4 non-hodgkins  lymphoma), which resulted in her being in UHCW at the same time as Amy.  After several months of the strongest chemo available and radiation therapy (because she was young enough to survive it!) she emerged thinner, weaker but in remission.  Jo and her husband Dave have devoted themselves to finding the latest information on dealing with Amy's condition, but finding time to visit Amy who is in Sheffield, about 100 miles away, puts an enormous strain on both of them while they continue to carry on with their demanding jobs.  We (my wife, Sandra and I) try to visit Amy as often as possible but because of her tough regime Amy cannot receive visitors until after seven in the evening.

Any donations no matter how small and/or sharing the web sites with the social media would be very much appreciated.

Here are the links to her web sites, the HelpAmy web site, HelpAmy

Amy's crowd funding site gofundme.com

Lots of news there with videos and photos of Amy and her family and friends

Thanks to all of you for reading this.

JC



29 comments:

  1. Is it possible that she might have Guillain barre syndrome
    My friends wife has this and it took a while to diagnose

    ReplyDelete
    Replies
    1. Thank you for your comment, it is very difficult to know what to say RK. Amy has received so many conflicting diagnoses but the "experts" have come to the conclusion that it is FND and CRPS, combined with Ehlers-Danlos syndrome. I'll let those who are interested look that one up. She has also acquired an extreme allergic response to cow's milk, resulting in several anaphylactic shocks, despite the hospital being warned not to include any dairy products in her food. She has an epinephrine pen with her at all times in case of another episode. she cannot hold her head up but it is getting better. The latest gadject she is using is the latest virtual reality device which it is hoped will allow her to gain control of her left arm and hand. Ill ask the doctors about Guillain barre syndrome just to be sure. Thanks again. JC

      Delete
  2. I've heard that there are companies that will give a patient a cash advance to pay their medical expenses if the patient is suing some doctor or hospital for negligence and it looks certain that they will win a large judgement. Have you explored that possibility? Also, if they advance the cash and the patient does not win the suit, then they don't owe the company any money.

    ReplyDelete
    Replies
    1. Thanks anon, Amy’s dad is pursuing that path but we have been warned that it may take years to achieve success, so in the mean time we continue to tell her story and hope for even more donations and shares. 🙂 JC

      Delete
  3. Precious John! Prayer is one sure way, just trust.

    ReplyDelete
    Replies
    1. Thank you Trevor, I appreciate the sentiment. JC

      Delete
  4. JC Sir,

    Though I am not in a position to directly make cash contributions I am willing to share a significant amount for Amy's cause if I can manage to get some good money by selling Bessler invention as I am very sure I possess the wheel secret... I am not kidding but this is the only sure way I can think of...

    ReplyDelete
    Replies
    1. Bless you for your kind words Suresh Kumar. JC

      Delete
  5. Dropped her some.. Best wishes!

    ØR

    ReplyDelete
    Replies
    1. Thank you so much Øystein, you cannot know how grateful we are, all of us. JC

      Delete
  6. Glad to help John. Enlighten those of us in the U.S. I thought the NHS paid for this kind of stuff...(albeit much delayed in providing services).

    ReplyDelete
    Replies
    1. The NHS is wonderful but they don’t have the funding to offer specialised treatment such as Amy is getting now. CRPS and FND don’t even have a recognised cure, so all they could do was feed and keep her clean, and give her limited physio. She was steadily getting worse and had to be fed through a tube in her nose and a other stuff I don’t even want to mention. JC

      Delete
  7. John .. put a request in the Tech Forum at BW.com. Scot reads it.

    -f

    ReplyDelete
  8. Under another user name.

    ReplyDelete
    Replies
    1. Excellent advice, that’s my next thing, thanks. JCu

      Delete
  9. Wow! It took me about 20 goes to get the ‘word’ I had to copy, to get it right. But it still doesn’t recognise my new name and password. JC

    ReplyDelete
    Replies
    1. Well three of us have tried registering with forum, which is supposed to send an email so we can confirm, but nothing has happened, also the word to copy doesn’t work. If anybody feels posting my problem in tech support I’d be delighted. JC

      Delete
    2. I’m in touch with Scott, hurrah! JC

      Delete
  10. Thank you to the kind person who donated generously last night. I have name but I don’t recognise it, although I know it’s a Bessler man. JC

    ReplyDelete
  11. John was Amy ever put on any statin drugs if so in some people they have been known to cause severe peripheral neuropathy I know that seems pretty simplistic but it never hurts to ask considering the doctors we have today often have tunnel vision

    ReplyDelete
    Replies
    1. Oddly enough one of her doctors did raise that very question, but no, she has always been ultra fit, a gymnast and dancer in her spare time, and has never had to have any medicine at all, ever. But thanks for the suggestion. JC

      Delete
  12. John she also might be sensitive to Canola oil it's low in cholesterol but no one should be using it it's derived from the rapeseed her nervous system might be hypersensitive to any residue of it in any case keep it out of her diet and yours as well unfortunately it's in a lot of products

    ReplyDelete
  13. By the way John Spain processed rapeseed oil incorrectly an injured over a thousand don't believe everything people say about what's healthy and what isn't get back to natural diet olive oil is good corn oil in moderation of course moderation is the key God bless you and yours

    ReplyDelete
    Replies
    1. Thanks Stephen, we know her sensitivities are mainly cow milk and it’s derivatives, and gluten and wheal, to a much lesser extent. Only milk causes an anaphylactic shock. Ketamine causes extreme hallucinations, but as far as we know they are her only problematic Items. Again I appreciate the advice. JC.

      Delete
    2. Thanks for another kind donation, again I don’t recognise your name, but we are so grateful. JC

      Delete
    3. John I myself have allergic reactions I am allergic to many medications I am allergic to all non-steroidal anti-inflammatories when I had my heart attack they were giving me aspirin I left that hospital it's not that they didn't know I was allergic they chose to ignore it

      Delete
    4. John you have a strong mind you will make a good advocate for Amy always as they say back to the drawing board Mysteries are meant to be solved information is the key

      Delete
    5. Thank you for the latest donation and letting me know who you are. I really appreciate the many kindnesses of so many of you. Thanks also for the good wishes expressed both here and through private correspondence. JC

      JC

      Delete
    6. Thank you yet again for more kind donations to Help Amy to walk again. ❤️

      Delete

Bessler’s Wheel, odd numbers and the Pyramids.

You might think there cannot be any connection of interest to us, between Bessler’s wheel and the pyramids, but I will explained. As many...