Reminder from Simone

[pazzamadre]

Hello everyone. Simone also reminded me that I hadn't posted for 4 years. At that time my daughters condition worsened, she couldn't stand, was regularly falling on her head, and became unable to live on her own. Social workers most of whom did not understand the condition Ataxia, and against my pleading and protestations placed her aged 49 in an old people's home, 3 hours away from where I live, it was catastrophic for her mentally and for me. I had to go above them and look myself for a better place. I found a wonderful care home for young adults with neurological problems only half an hour away and with the help of my MP secured her a place there. 18 months ago after annual visits to the admirable Cresta Clinic in Newcastle and genetic tests, Prof. Horvath gave a devastating diagnoses of the very rare degenerative disease Niemen-Pick Type C. She is very ill now, after recurring bouts of aspirational pneumonia is having a spell of palliative care in a hospice, going home on Monday☺. I still am a pazzamadre when I remember the way her GP and Social workers presumed her falling was due to drinking alcohol. I wish every one in Health Unlocked well and lots of love, keep on fighting.

[Don21]

So sorry for all the heartache you've had to go through.

Sending very best wishes . Please take care of yourself. Donna xx

[Veteran250 in reply to Don21]

Hi Passamadre....... it saddend me that we have to convince the Medical Staff and social services of our or our loved ones Medical conditions, they always seem to look for the easy diagnoses to keep us happy, but never say sorry when they get it wrong.

I’m sorry to hear of your daughters problems, sending best wishes to you both.

😀🌞👍😘🌹 Xx

[pazzamadre in reply to Veteran250]

Thank you for your good wishes.☺. Pazzamadre xx

[pazzamadre in reply to Don21]

Thank you for your best wishes ☺. Take care of yourself too, Pazzamadre xx

[pinjem]

It is more difficult having a loved one fall ill than it is for ourselves. Thank goodness you are able to support her, and believed her when others who should, did not.

[pazzamadre in reply to pinjem]

Thank you. I hope all is OK with you. Pazzamadre ☺

[Hidden]

You don't sound like a 'Pazzamadre' to me. You sound as if you are a very caing Mum but have been driven mad by Social Workers and your daughters GP My best wishes to you and your daughter ( and a big hug) Chris Xxx

[pazzamadre in reply to Hidden]

Thank you, just what Ineeded. Pazzamadre☺

[ww-wibblywobbly]

So sorry to hear that you had to go through all this. So amazing that you managed to get your MP on board.

Really it's a disgrace that they put her in that home, when there's a neurological one so close to you.

She's lucky that she has such a wonderful mother to fight for her.

Sad for you both that she's already reached this stage of life. I'm praying for a miracle for your daughter - you never know

Love and hugs

Xxxxxx

[pazzamadre in reply to ww-wibblywobbly]

Nice to hear from you again, hope you're not too wibblywobbly, thank you, love and hugs much appreciated. Pazzamadre☺xx💞

[february]

Dear pazzamadre, You are an inspiration to me, fighting for your daughter! I can tell you are a very special mom! I also have Niemann Pick C (NPC) disease. I found out in 2017, through genetic exome testing, followed by a skin biopsy and then a blood test, that due to NPC, I had ataxia. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) when I was 49 years, although I had extremely minor symptoms that something was amiss starting at about 43 years of age. I'm 65 years now and never thought in my lifetime that the cause of my ataxia would reveal itself! My ataxia has progressed over the years, as I've fallen a lot (sometimes really hurting myself) and use a rollator to get around my house. Yes, NPC is very rare and from what I understand late/adult onset is even more rare! Anyway, I wish you and your daughter the best and am so sorry your daughter is ill! Thank goodness she lives closer to you now! I live in the United States (State of Michigan), hence my typing 'mom' rather then 'mum"! ;o)

[pazzamadre in reply to february]

Hello February. My daughter had the same tests as you. I get a lot of support from NPUK, have you tried their Web site? ironically it is in Washington (UK) only 10 miles from where we used to live 20 years ago. Do you have much support in Michigan? There was a NPUK conference two weeks ago, I couldn't attend as my daughter is ill, people from all over the world attended. You are the only person I've had contact with that suffers from NPC. All the 100 or so UK suffers are thinly spread all over the country. I've had a lot of help from Ataxia UK and lovely words of support from people on Health Unlocked. Take great care of yourself. Love from Pazzamadre ☺×× 💞

[february]

Hello Again pazzamadre, I looked up the NPUK web site, thank you for telling me about it! Here in the United States we have the NNPDF (National Niemann Pick Disease Foundation). It may be helpful to you! You are the only person I've had contact with that has a loved one with NPC as well! I see my neurologist every 6 months. I have great support from my dear husband, some family members, several good friends that understand the best they can, as well as a few ataxia (different types) friends online (we email back and forth) I'm very blessed! You and your daughter take good care and my best to you both...,Love, February ;o)

[Litty]

Having a poorly daughter is horrid but you are and have done so much. Well done and good luck xx