lizoggmnd.blogspot.co.uk

Blog 5

Hi everyone and welcome to Blog 5!  For those new to this, you can find my other diary entries below in reverse order. Can’t believe we’ve now been blogging for the last two months. Thanks to everyone who has encouraged me to keep writing.

Facebook News Flash

The main focus this time round is the launch of our new Facebook page: MND Together.  It might help if I explain why we’re setting this up. 

Clearly, an MND diagnosis is a major and life-changing event. After diagnosis, medical and other support is always put into action very efficiently, but sufferers and their families / carers can often still feel very isolated.  The disease also manifests itself in so many different forms and at different rates, so patients can be facing quite individual symptoms and issues. People then frequently turn to the Internet for advice, but this information tends to be mainly of a medical nature.

Currently, there is often an excellent focus on awareness-raising of the disease and on fund-raising but there are few opportunities for sufferers and their families to get together. Live forums are organised and can be places where general information is given and questions can be asked. But it is more difficult in these contexts for people to share openly on a more personal level. That is if they are physically able to attend these events.

We feel the time is now right to try to establish an online forum on Facebook, which would have as its theme Caring and Sharing. Local, independent MND groups like this already function successfully, for example, in the US and New Zealand. Several people who responded to the Blog thought it brought them a sense of reassurance and comfort.  It allowed people to compare their worries and problems and offer solutions.  

In a way, being able to write about your condition and share your thoughts and feelings “off camera” so to speak, perhaps offers people the opportunity to define MND in their own terms, rather than be defined by MND. If that makes any sense…

How do I join the group?

Our idea is simple. The private group on Facebook is called MND Together. It currently has a handful of start-up members. The idea is that MND sufferers and others involved with MND can be admitted to the group and can post their thoughts, feelings, symptoms etc. Other members can then post, share their experiences and offer their solutions in this private area.

It’s simple to join the Forum. On your Facebook page, simply type in MND Together at the top of the page and press search. Then send a friend request and you can join us. (Please note there is another group MND Together we stand, which is no longer in operation).

If for any reason this fails, search for Alan P Hathaway (The Boy’s Facebook page), send a friend request and he’ll immediately place you in the group. 

It might be helpful if you send a message at the same time through Messenger, to say where you are from and why you want to join the Forum.

However, our main issue at the moment is getting the message out there, informing people of the existence of the Forum. We are asking MND associations and other groups to consider sharing the information.  That way, we can ensure the maximum number of MND sufferers, their families and carers participate and benefit. If you can help with this, that would be great!

ME update             

As for me, I continue to gather equipment to make life easier and less precarious. I have recently added to my collection a natty little Zimmer frame, or "Zoomer", as the grandchildren call it.  The boy’s arm served its purpose, but increasingly I was in danger of taking him down with me! And this means I don’t need to wait to be taken from A to B. And there are days when his ankles, knees etc are not much better than mine...

I have a seat for the shower and am about to have a couple of grab rails fitted. It is disconcerting to discover that you can’t move through two planes simultaneously i.e. I can turn, slowly, and I can sit, but not at the same time. Last attempt almost resulted in a mild case of whiplash!

We have abandoned the electric pillow raiser. Aside from the flatulence issue, [see blog3] it just didn’t work for me. Too big, too uncomfortable and restrictive. So as a compromise I now have a small rail on the side of the bed which allows me to haul myself about a bit, though the Boy increasingly gets a dig in the ribs around 3.00am, which signals I need my pillows rearranged!

And I’m still as frustrated as ever at not being able to have the last word in ‘discussions’ with the Boy. If, by the time I’ve typed in my withering put- down, he has moved out of earshot – it rather loses its sting! Maybe just as well.

The Boy's Blog

Time for a quick input from The Boy (once known as Alan).

Hi everyone and thanks for letting me get a word in edgeways, Liz! 

Obviously, life has changed radically for us both in these last months since Liz’s diagnosis. I’ve given up working and am now happy to care for Liz full-time. As you’ll maybe remember, we’ve been together for almost 50 years, which makes us sound almost ancient – we probably are in many eyes! But our very close relationship has made this gradual transition fairly straightforward. 

Gradually over the months, I’ve taken over many of Liz’s household duties. She has always been allergic to vacuuming, dusting and ironing anyway. Her motto was always: "Behind every successful woman is a pile of laundry" So, I’ve now got used to taking charge of the shopping, cleaning and washing. She still won’t let me into the secrets of her “creative accounting” approach to finances, but I now take responsibility in the kitchen most of the time. She does still want to supervise kitchen activities at times, but I’m hoping the makeshift, padlocked gate at the kitchen door will stop this.

What do I miss? So many things. I miss her lovely voice, although have grown quite fond of her App vocals. I miss going out with her for lunch, dinner, coffee, drinks. I miss being able to travel, have a meal with friends, have long walks, go to the cinema and theatre, dance round the living room, have a good argument. Although life is now severely limited, a secure routine now cements each day and we still manage to find happiness and laughter in the day to day changes we have to make. Our philosophy is: No problems, only solutions.

                                   AND NOW FOR A QUICK SALES PITCH !

 

A year ago, I published my first book on Amazon Kindle.

ALL royalties go straight to MND (ALS) research. 

If you’re interested, you’ll find it on Amazon Kindle, under 

“Around the World in a Complete Daze” 

  by Alan P Hathaway (my pen name).  

Keep well and keep reading
Liz