The Slippery Slope

[Gillette]

Hi Andy,

Thank you for reminding me about eye gaze and for the tips. I keep forgetting to contact Assistive Technology, I really must do it.

[Gillette]

Hi Dina,

I am so sorry about your progression... Each stage is so upsetting and depressing and losing independence and dignity is awful. You're very entitled to moan.

I really hope you can hold your new granddaughter later this month but Ellies and Boilers comments were really comforting... I know it's not ideal but I bet you cant wait to see her and have a snuggle.

Hope today is a better day for you,
Love Debbie x

Hi Debbie,

You're right, I can't wait. I've been ringing the expectant parents to tell them that the baby must get a move on! I have to say, I'm not impressed with a grandchild who defies its Nana! Ha ha ha!

[nunhead_man]

Hi Dina

Can I add my two pennies worth of encouragement to carry on grumbling as much as you want.

It had not occurred to me the losing my arms would affect my ability to hug and as this is one of my main ways of connecting with those I love, that is another to add to my MND hate list. http://forum.mndassociation.org/images/smilies/mad.png

I am the other way round from you I guess as I seem to be losing my arms before I lose my legs and I am with somebody else when I say I probaby wish I was the other way around - not I can do anything about it,

I am just beginning to experiment with eye gaze and have the experts coming around later in July to show me properly how to set it up and as 'puters have been my window on the world for so long I will do everything I can to keep a connection going in that regard.

I guess I am saying the sooner you try it, the better you will get as, unless you do certain yoga exercises you probably will not be used to using your eyes in quite the same way as you need to for eye gaze.

Warmly

[Deb]

Hi Dina,

I am so sorry about your progression... Each stage is so upsetting and depressing and losing independence and dignity is awful. You're very entitled to moan.

I really hope you can hold your new granddaughter later this month but Ellies and Boilers comments were really comforting... I know it's not ideal but I bet you cant wait to see her and have a snuggle.

Hope today is a better day for you,
Love Debbie x

[Gillette]

Hi Boiler
Thank you for your reassuring comments.It could end up being a bit of a squeeze?

[Boiler68]

Hello Dina...my husband has very little use of his arms and when our granddaughter was born (7 years ago now) he had the same fear. By the time she was born he wasn’t strong enough to pick her up or support her himself so we used to place pillows all around him on the settee to support them both and we’d place her on his lap where she was very happy gurgling away looking up at him. He could place his big granddaddy finger in her starfish palm and the love affair began! She now rides on the back of his powerchair and when we’re getting him out of the car she’s in charge of the driving the chair to him.(All done on our driveway safely btw). She knows his preferred settings and helps him switch on and off. Try not to worry too much - you’ll be loved all the same! Xxxxxx

[Gillette]

Hi Ellie,

Thank you so much. You always come up with positive ideas. Thanks for the reminder about AAT - I had set a reminder on my ipad but then didn't make the call!

[Ellie]

Good morning Dina.

Sorry your progression is relentless - there's not a lot I can say to sugar coat your situation.

My ALS/MND started in my hand and my arms went pretty quickly (legs too, but hands are more useful than legs in MND Top Trumps ) so I understand the impact it will have on you.

I've held my nieces and nephew in a baby sling - almost as good as holding them in my arms. I felt their warmth on my chest and got that scrumptious new baby smell and the babies were safe. Maybe you could do this, especially if you want to hold your little granddaughter for a while?

As Terry said, think about how you can continue using a tablet or PC. You should probably start checking with Assistive Technolgy (AAT), your MND Nurse or Clinic should point you in the right direction if who don't know who to contact.

Big hug to you.

Love Ellie.

[Gillette]

Thanks, Terry, Sheila and Barry. I'm getting a bit anxious as there seems to be a race on between my arms (which are giving up as fast as they can) and my younger son's baby, which is due later this month. I really want to be able to hold her...

[Barry52]

Hi Dina,

I am saddened that you have progressed to this but you still have a wonderful mind that you express so well in words. I hope you find a way of continuing to post on this forum.

Despite what this disease throws at us never give up.

Love Barry x

[Sheila]

Hi Dina!
Don't worry I feel the same way. I can't walk very far now unfortunately. A year ago I was running away from being chased by cows !! How things have changed. My hands aren't very good, can't write now. My voice has all but disappeared! What on earth have we done to deserve this?!?!?

Sorry for moaning.
Sheila x

[Terry]

Hi Dina;

Please grumble. Yes I fear that as well, just losing little bits and pieces is scary for me.

I can only say prepare as much as possible with computer access.

We need a magic pill.

Love Terry

[Gillette]

Having lost the ability to walk just 30 days after being diagnosed, the MND has been relentlessly progressing. In the past few weeks I have noticed marked deterioration in both of my arms, with the right arm more affected than the left. However, in the past two or three days, the left arm has gotten considerably worse, leaving the right one suddenly playing catch-up.

I am really fearful of life without functioning arms. I am already dependent on others for so many things, although I try to do things for myself, but I dare not even try to imagine how useless I am becoming and will be. I have also noticed changes in my hands - yet another scary sign.

Does anyone have a trick for coping with an utterly useless body, please?

* OK, grumble over. Still fed up, though.