Mum has MND. We are struggling.

[SharoninAus]

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

 

[Green Queen]

Hi Sharon
Yes, so sorry to meet you here.
There are beautiful, helpful, compassionate carers (CALS) on this forum, you are not alone.
Not question is too silly, and you'll see there's also a section for rants and raves.
God bless, Janelle x

 

[cheerleader]

Sharon, you have the weight of the world on your shoulders between your job, family and helping your parents! Someday you will look back and wonder how you did it all - but be glad you did! Thank you for the love you are giving your parents! They are fortunate to have such a grand daughter! Welcome- but sorry you have to be here. Donna

 

[patrick123]

On The Wings of Sparrows

Bound by movement.
Bound by speach.
Bound by the unknown and fear.

I close my eyes and dream.
The Ties that binds falls apart.
And seek the flight of sparrows.

To dance on the freedom of the wind.
Not an eagle nor falcon.
Sometimes overlooked but always there.

Reality has a way of shaking up your life.
To find a safe place where there are no boundaries.
The dream transcends and gives hope.

To let your own spirit seek the flight of sparrows.

Patrick

 

[Atsugi]

Sharon, welcome to the club. Sorry to hear about your mum. You all have quite the challenge.

It sounds like your mum is using humor to handle it. Your dad is keeping himself busy to handle it. These are all good things. Don't forget that your sister and you need some respite, too.

Best wishes.

 

[Alana]

Welcome Sharon I to am new on this forum. I'm sorry that you have to be here.
You have joined a very special kind, thoughtful, helpful, caring and sometimes funny kind of people here. I felt a small amount of relief when joining. It's nice to chat with people who are going through this and understand totally.
I too am an Aussie and grew up in Brisbane, I married a Californian and live here now. My hubby is 54 and just diagnosed in May.

It's great that your Mum has a sense of humour, it seems to ease the awkwardness about this horrible disease. You sound like a close family, so hang in there take one day at a time and rest when you can.

Blessings Alana

 

[affected]

A warm welcome Sharon, so sorry for your mum's diagnosis.

 

[anderkling]

Hi Sharon,
Welcome to this forum. Your mum sounds like a remarkable woman, and so do you. Your Dad is doing all he can for her around the house to make life easier. It's obvious how much they love each other. Although what you are going through is heartbreaking, it's a blessing that your family is close and deeply caring. I admire your mum for maintaining a sense of humour in the face of such losses. Your poor Dad! So many years of being together--how very hard for him. Even though I don't know you personally, I share your pain. I'm sorry. I pray you may have the grace and strength for each new day.
- Charlene

 

[Gembead]

Hi and welcome Sharon, sorry about your mums diagnosis, you will get lots of advise and many listening ears, many warm hugs and much support here.
Love Gem

 

[SharoninAus]

Thank you all for your kindness.

I have decided to take my leave to help dad out, so I start next Monday and for six weeks will be able to give him a break on a daily basis while the kids are at school.

Mum went to the MND clinic today. Her lung function is down to 25% - it was 55% at the end of January and 40% at the end of April. At what point will she need ventilation of some sort? She doesn't seem to be obviously struggling to breathe, but how low can that result go before there are serious consequences. They just gave her an appointment for 3 months time.

Any advice greatly appreciated

Sharon

 

[affected]

Do you attend the MND Clinic at the Royal?

Do you know if she has a bipap or if she has decided if she wants one?

 

[SharoninAus]

Hi Tillie

We went to the Royal Brisbane Hospital initially but now go to the clinic at the PA Hospital. I thought that at this appointment ventilation would be discussed. I didn't get to go, but my sister went and she said they didn't mention Bipap, just said they would monitor symptoms.

Kind regards

Sharon

 

[Chumpy]

Sharon,

Welcome, just wanted to let you know that this forum is the best place in the world! The people here really truly care and can help you whenever you need them! An amazing family!

Also BiPap has helped my husband a lot lately. It gives his diaphragm muscles much needed assistance! That causes him a good nights sleep. So it would be worth bringing up. I have noticed sometimes recommendations don't always happen like they should. So learning things that help and asking works wonders!

God Bless you, Praying for you and your family!
Chumpy

 

[affected]

Something just doesn't seem to add up does it Sharon.
25% is pretty low, do you know if they have done a MIPS and MEPS - this one measures the ability of the muscles.

Can you tell me what her breathing is like?
Does she sleep in a semi-upright position?

 

[SharoninAus]

Hi Tillie. I don't know about MIPS and Meps. Yes, Mum sleeps semi upright at night. Dad positions her - she can't move herself. Generally her breathing seems okay - we don't obviously notice her struggling to breathe. I have been checking for headaches on waking. She has reported this a few times recently. It's awful just waiting and watching for her breathing to fail her.

Sharon