SharoninAus
New member
- Joined
- Aug 5, 2015
- Messages
- 8
- Reason
- Loved one DX
- Country
- AUS
- State
- Queensland
- City
- Brisbane
Hello
I wish I had found you all sooner.
On 21 October last year (2014) my sister and I took my mum to a (another) specialist in Sydney. She had been treated for 2 years for CIDP. She stopped work and she and Dad put their lives on hold basically to "get mum better". She had IVIG, plasma pharesis and all kinds of other drugs, but nothing helped. Nothing helped because, as we found out that day, she doesn't have CIDP, she has MND. On 21 October 2014 Mum could walk (with assistance), talk, and eat. Now she can't eat, she has a PEG, she can't talk (uses a computer), she has no lower body purposeful movement, is confined to a wheelchair and over the last fortnight she has lost the ability to hold up her head and neck. In April her lung function was 40%. It hasn't been assessed since, but she seems not to have too much trouble there - yet. I guess that will be the next thing to become more obvious - there isn't anything else left.
I can't remember the sound of her voice. I cry every day. When I am with her (I go two days a week - I work fulltime, 5 days, and also have 3 children and a shift working husband) I am ok but when I leave, and in between, I'm a mess. It is so horrible. I know you know that.
Mum, is amazing. I don't know how she smiles, but she does. And she teases Dad; putting funny sayings into the computer and cheekily hitting the button for the synthesised voice to deliver.
Today, I was there. I sat with Mum while she had a drip feed run through and we "talked". I did their washing and I vacuumed and mopped the house. Mum's house has always been spotless and while Dad is doing great, with all he has to do, mum says "dad doesn't look up". Dad is coping well practically but barely coping emotionally. He has remodelled the bathrooms, built ramps everywhere and placed hand sanitiser machines at the front and back doors. If you give a minute though, he breaks down. They married young and this year marked their 50th wedding anniversary where we had a vow renewal for them.
I know much of this will be "no news" to just about all of you, and it's an awful way to make your acquaintance, but - "hello."
Sharon
I wish I had found you all sooner.
On 21 October last year (2014) my sister and I took my mum to a (another) specialist in Sydney. She had been treated for 2 years for CIDP. She stopped work and she and Dad put their lives on hold basically to "get mum better". She had IVIG, plasma pharesis and all kinds of other drugs, but nothing helped. Nothing helped because, as we found out that day, she doesn't have CIDP, she has MND. On 21 October 2014 Mum could walk (with assistance), talk, and eat. Now she can't eat, she has a PEG, she can't talk (uses a computer), she has no lower body purposeful movement, is confined to a wheelchair and over the last fortnight she has lost the ability to hold up her head and neck. In April her lung function was 40%. It hasn't been assessed since, but she seems not to have too much trouble there - yet. I guess that will be the next thing to become more obvious - there isn't anything else left.
I can't remember the sound of her voice. I cry every day. When I am with her (I go two days a week - I work fulltime, 5 days, and also have 3 children and a shift working husband) I am ok but when I leave, and in between, I'm a mess. It is so horrible. I know you know that.
Mum, is amazing. I don't know how she smiles, but she does. And she teases Dad; putting funny sayings into the computer and cheekily hitting the button for the synthesised voice to deliver.
Today, I was there. I sat with Mum while she had a drip feed run through and we "talked". I did their washing and I vacuumed and mopped the house. Mum's house has always been spotless and while Dad is doing great, with all he has to do, mum says "dad doesn't look up". Dad is coping well practically but barely coping emotionally. He has remodelled the bathrooms, built ramps everywhere and placed hand sanitiser machines at the front and back doors. If you give a minute though, he breaks down. They married young and this year marked their 50th wedding anniversary where we had a vow renewal for them.
I know much of this will be "no news" to just about all of you, and it's an awful way to make your acquaintance, but - "hello."
Sharon