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Renza8
24th May 2015, 18:58
Hi all. Posting on behalf of my mum again, bulbar onset Dec 2013, diagnosed March '15. She's really desperately struggling psychologically & emotionally, with the diagnosis but more so with the loss of her ability to speak. I have hit a brick wall in being able to help her with this, aside from chasing up the referral to psych. Mum is wondering if anyone ever actually accepts what is happening to them? If so, was there a particular point when that acceptance occurred? I know there are a few good books out there written by MND sufferers, but I don't know if they would help or hinder at the moment. Mum is a Christian but I don't think any prayers or readings are helping reassure in the slightest.

Also does anyone have any suggestions on how to get kids on board the new way of communicating; 3yr old granddaughter doesn't want to listen or respond to the talking iphone app & hasn't learnt to read yet, & 6yr old grandson takes over the whiteboard/iphone. He has ADHD so is quite difficult to work with at times. Mums not keen on anti depressants as she's on heaps of drugs anyway for her kidney transplant, plus worries about any side effects.

I'd be so grateful for any ideas or recommendations,

This is totally breaking my heart,

Thanks, Kerenza x

willsandco
24th May 2015, 20:11
hello Kerenza.

I am 67, was diagnosed with bulbar onset in mid March 2015. I had had slurring problems for 10 months, My speech gradually deteriorated until it was gone by November 2014. My speech therapist got me Predictable by Therapy application and we bought the IPAD ourselves. This is virtually all I use now. I have got really fast on it. I do have pads and pens to hand, I do make laminates to show to people but the IPAD is all really. I do have a wonderful husband, who is a chatterer anyway, and he does all my phone calls and acts as a spokesman for me when we are out and about.

Whenever I have to see any professional, be it hospital, GP, OT, speech therapist, hospice, dietician, anyone really, I type them out a report. This has two benefits. I don't have to try and explain (nor does Peter) and they can keep it for their records. Plus, Peter says that is a bonus as he finds out how I really am!

I was the noisiest gal on the planet before this happened. I had my own poetry business and lectured on the international circuit. I never was ever quiet so this is quite a change for me now.

Tell Mum that I have accepted it now and I don't cry many tears over it these days. It was upsetting in the beginning because I couldn't chat to my girls and the grandchildren, but we have all adapted. I too am Christian, did readings and intercessions in church, sang all the hymns and now I cant do that. Sometimes in church on Sundays, I do get emotional when certain favourite hymns come on.

I am used to it now. I am concerned a lot more with my mobility which is fading fast. I don't mean I am not bothered about not being able to speak but, in the big plan with everything else, I have learned to cope. In truth, the difficulties Peter and I had was when it was fading and I was still trying to communicate. Now it has gone completely, it is easier (don't know if that will make any sense, but it is true!)

See if you can get Mum predictable by therapy. It even has a button on it to register a laugh or a kiss!

My best advice to you is to encourage Mum to join us here on the forum. People are on here are good folk who give great advice, great tips and techniques. From the stuff I have learned on here, I have been able to keep one step ahead and I seem to know better where I am going and what is happening...............! Plus, Mum will meet some simply inspirational and wonderful people. I have made such good friends here, albeit people with MND, their carers or those who have lost loved ones with the disease,

She can talk about what concerns her, read up old forum posts, have a rant if she wants, In short, she can express herself and her concerns with people who do really understand how she feels.

I hope I am some help

You can always send me a message if you want any more information or a private chat.

Much love to Mum and to you

Joycie x

pete
24th May 2015, 21:46
Hi Renza,

To be honest I doubt if any of us has truly accepted anything, more likely we have just carried on with our lives as best we can. Having little choice in the matter and no treatment for us, the only way of dealing with the problems that arise is down to the individual as to how we manage life that has changed our futures forever, no speech is my worst issue without a doubt ,it isolates and removes part of your personality that no gadget can replace, but most kiddies cope far better than adults, in my case I have a three year old granddaughter who has learnt how to communicate with me ,how I have no idea, but kids accept things far better than adults don't make problems that are not that relevant and given time she will cope as will your Mum. The main most important thing is not making it a huge issue ,as that only adds yet more stress on all involved far better to put efforts into finding ways that help even with little problems that can make a huge difference in life now on . There are no books or single fixes as we all deal with the issues in our own ways, you will need patience from now on as even the simplest of tasks can become so frustrating with this condition.

Regards
Pete

Jock
25th May 2015, 08:17
Hi Kerenza

Knowing there is no cure helps me with acceptance. I train my mind to focus on what I can do and not what I was once able to do. My speech is now on it's last legs, but my attitude is life goes on. Respiratory matters are to my mind more important in terms of longevity. So far at each step of the way I've learn to cope, often with the help of my wonderful Palliative Care team.

Kind regards Jock

GrannieAnnie
25th May 2015, 09:07
Hi Karenza,
I too have bulbar onset and it is tricky. The iPad with predictable is a great help but the mini iPad is not so big or heavy to lug around. Joycie has given good advice as have Pete and Jock. There is no going back so I think today is good no idea what tomorrow will bring so let's go with today. My voice has gone, I have a grunt but the laminated cards are a good idea when shopping and like Joycie I too give my doctor a typed out note of how I am because that's always their first question! You clearly need some help, the Mnd connect is a good place to start but with other health problems your Mother must already have some medical assistance, if she can come on the forum then she may feel as we all do, part of an enveloping family who are always ready to help. Anne x

Steve
25th May 2015, 12:59
i think the only thing that helps with coming to terms with things is, time. some people never come to terms with it, or deny they have it. it is just too massive to comprehend for them.

the best thing you can do from my experience is just be there.

the other responses are spot on about comm etc.

Night walker
25th May 2015, 19:59
Hi

Take all the help you are offered. Don't try to fix everybody because you can't, you really can't. Kids are resilient little creatures, be there with hugs and let them talk if they want to. There is so much good advice on the forum, old posts on every subject and the methods all viable. Many carers with oodles of hands on experience still pop in to help, there is a lot of folks who do care here. Do keep posting.
Stay strong.
Sylv

Renza8
31st May 2015, 21:33
Thanks all for your replies. So sorry to take so long to find them, I didn't realise they were there. Have forwarded all on to mum xx

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