astro

Hi Astro. sorry for not replying to your message. I found it too upsetting reading some of these posts. so sorry that your mum has lost her voice - this is one horrible disease. mum can still speak though she is getting progressively worse and she is having difficulty eating - altho the stress of this whole thing makes her not want to eat anyway. she was on fortisips but they didn't agree with her so she's changed to a soy variety. she is also having some difficulty with her breathing so she is freaking out about that particularly as she is also an asthmatic. she see's her neurologist again this week. Keep strong.

No she struggles with most food, has to be very soft, chokes on anything. Tried thickners but found it horrid. How great that you have the opportunity to care for your mother. I am unable to give up work and she refuses to live closer. Making it all the more difficult to keep an eye on her. Its quite frustrating. Take Care.

Slow sounds good...? Glad to hear she regained some weight. Is she able to eat most foods? We're doing fine. Mum's progression continues 'stealthily' to use her consultants word. She isn't independent, hasn't been for some time. I gave up full time work last March so that I could take care of her. All the best

Still slow. I have not visited for a month, living so far away. She lost weight but has regained some, I am pushing for her to get a peg, she is not keen. Saw a specialist today for her hips. She is in dire need of a replacement. They are keen to go ahead, but would review it if her health begins to decline. I have joined another mnd forum closer to nz through Yahoo. How are things with your mum? Is she still independent. Thanks for your thoughts.

Hi there. How's it going with you and your mum?

She has been travelling to see all supports. It is uncomfortable for her to be in the car and it takes a good while to get anywhere. However the speech therapist has visited the house when they introduced her voice computer. Still managing to eat, only just. Refusing to see her GP for fortisip....stupid woman. Another Neurologist appt in Dec I think. No diagnosis of course, from what I read here it may take a lot of time, especially when she has no other major symtoms apart from the Bulbar. Would love a second opinion, following that up with her GP. Is your mum speaking and eating?
I am really missing not hearing her voice or chatting. thanks for your support.

she is seeing a number of different health carers, eg Speech therapist , hospice, dietician who have visited her at home. Hospice have offered carer support further down the track. I would really like her to see a naturopath but I don't know if she will. Is your Mum being seen by anyone? It wasn't until she had her 2nd opinion & got put into the public system that she was able to get these appointments. but they have all been real onto it, & have seen Mum quickly. We've been impressed. hope your Mum is getting the help she needs.

Thanks so much for that. I will follow this up. Do you have support from the district health board in regard to carers. My mother lives in Dargaville and off the beaten track if you know what I mean. I wish she was in auckland to be able to access all available. Take Care

Ok, her full name is Alison Charleston. Her website is www.healthpoint.co.nz. this has all her contact details on it. Apparently she is on holiday for the next 2 weeks. When Mum first tried to make an appointment, the receptionist told her that she wouldn't see Mum. We had to get Mums original neurologist to phone her and make the appointment. So be persistent and you also might need to get in through your doctor or neurologist.
Good luck :)

Hi there. thanks for your message. Yes, it sure is heartbreaking, still trying to get my head around the fact that our bodies can let us down in such a horrible way.
My mum saw a lady called Alison who I think is based in Greenlane. Apparently she is the only specialist in Auckland that specifically looks after MND. I'm checking with my sister for her surname & will let you know. she has 90 patients & only 4 hrs a week to dedicate. she said she won't see Mum that often but there will be plenty of other caregivers seeing her. she has a visit from Hospice today, they are v. Supportive. MND Association are organizing to see Mum soon. from what I've read on the Internet, high doses of vitamins & plenty of antioxidants could poss help to slow the progression, also excluding gluten from your diet.
Best of luck to you & your Mum for her 2nd opinion, I will send you Alison's surname as soon as my sister gets back to me. Kia Kaha.

Kia Ora! I am from North Shore, Auckland. My mother has just been diagnosed with MND - we are all reeling from the news. trying to find out if there are any alternative/natural therapies to slow progression.

Hi there. Saw your recent posts. Wouldn't it be great if your mum's diagnosis of pseudo bulbar palsy stayed just that. As regards tests there is no one test for ALS/mnd. There are swallow tests they can do which shows what is happening around swallow. Over here they are called video fluoroscopy. They will show which muscles are affected. Then there are tests where they insert needles into the muscles to see their reaction. As far as I know the ct scan doesn't show up mnd but rules out tumours on the brain. I know dec is a long time to wait but hang in there

Hi there. Mum is ok, she has been enjoying the company of my 13 yr old son over the school hols and I am so pleased he has been able to spend some quality time with her. She is having such trouble swallowing and losing weight. I have encouraged her to see her GP next week for some fortisip which should give her some easy calories, and I do hope they discuss getting a peg. How much sooner after your mum lost her speech and swallowing did the other symptoms start to show? How is she?, is she cared for, is she mobile. I understand if you would prefer not to answer such personal questions. I have been following posts and getting to know the wonderful courageous people on here. Thanks for the tip about quick links, I will look out for it. Take Care

P.S. To private message I know you have to have a few posts. Not sure how many. Then if you click quick links you will find a shortcut to private messaging.

Hi there- sorry only just saw your message. It got posted on your visitor page rather than mine. It is a rough journey I know but you WILL make it. How are you today? And how is your mum? I hope she is hanging in and you get a chance to get used to the diagnosis before anything else happens. Take care