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Mom struggled to cope

Oh my word, this is so sad.

A friend of the South African family, whose three children were found murdered at their home in New Malden, south London, said their mother was struggling to cope with her children’s genetic condition.

The victims, a four-year-old girl and three-year-old twin boys, had Spinal Muscular Atrophy (SMA) which left one in a wheelchair and the others unable to move.

Their mother Tania has been arrested in connection with their deaths.

via iafrica.com UK murder: Mom struggled to cope.

 
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Posted by on April 24, 2014 in Disability

 

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DAGMAR SLAVEN latest

I posted this on the TMA IBM section and wanted to share it here:Huge changes from one day to the next!
Posted by DAGMAR SLAVEN on April 2, 2014 at 9:57am in IBM DiscussionView Discussions
I do not find it easy to post about this but I do owe it to everyone here.

During the past year I kept on doing what was still possible but knowing that with each time I was transferring to and from wheel chair to toilet, stairlift or bed, my maneuvers were extremely dangerous for me and I did risk the chance of taking a fall and break something. I was very much aware that any mishap and losing the function of only one of my limbs would render me instantly totally dependent for everything.
I chose to block it out and continued on as I was until last Tuesday, when due to the ongoing and relentless muscle loss I was no longer able to get up from the toilet. I had to call my husband from my cell phone (he had gone out for a bit but was in the neighbourhood and was home within 10 minutes) With the help of a gaitbelt that I had bought some time ago he was able to hoist me back up and into my wheel chair.

From this moment on I could no longer depend on any of the maneuvers I had used for a long time, stubbornly, to do what I still wanted and could do albeit dangerously. Now my weakened body finally will no longer cooperate and simply said it had had enough!

Needless to say I am devastated by this latest loss, but have to remember I have been fighting this uninvited and unwelcome guest who has stayed with me for the last 25 years and I have been trying very hard not to let this guest rob me of my soul.

This crisis meant VNA services, establishing the need for a hospital bed, a lift device and a rolling shower commode chair. None of this can happen over night and we are in limbo state as to how soon it may happen. It will also require our looking for a PCA (personal care attendant) to give Bill a break, who to make things worse, has had knee problems and on that fateful day just had had a cortisone shot.

To be prepared for that fateful day I have had an Easy Pivot Lift from the MDA loan closet plus a commode that have graced our living room with their presence since last year, so in a way I was not totally ubprepared for this day finally to catch up with me and my body. I am so very grateful to have been at least proactive in that respect but my stubborn nature wanted to eke out more time and I eked out a little more than a year from our bathroom renovation last January to this year’s March.

My present problem is the use of the lifter which is rather outdated (came with a VHS tape for instruction) cannot be adjusted to my body dimensions and leaves me with bruises on my chest and arms. However I am grateful that I had it available in our home instantly. The other problem is our 2 story home which will require the need for us to have a second set of devices for both levels, since the roll in shower is upstairs. Having to use diapers full time now, there is no place downstairs to clean me up if I soil myself. Bill is my angel and rock but it hurts him and our children terribly to see me in this state. We do pray a lot and try to take one day at a time. I certainly would appreciate your support and prayers for me and my family. I AM devastated but do also count my blessings for everything in my life that has been available to me to help myself over these years of losses, grief and yes, acceptance of IBM, it is what it is, but I refuse to let it rob my soul.

Your sad and overwhelmed friend Dagmar

www.myomusings.com

 
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Posted by on April 4, 2014 in Disability, IBM, myositis

 

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Mom of Disabled Son Creates Harness that Allows Him and Other Children to Walk for the First Time | United with Israel

Debby Elnatan is not your typical mother.

When told her son had cerebral palsy and would be confined to a wheelchair for the rest of his life, this Israeli mom decided she would spend years building a device that would allow him to stand on his legs and walk, just like everyone else.

In a heart-wrenching stroke of genius, Debby created a harness which allows her and her son Rotem to walk in unison, leaving his hands free to engage in other activities.

Now her invention has been launched onto the worldwide market.

via Mom of Disabled Son Creates Harness that Allows Him and Other Children to Walk for the First Time | United with Israel.

 
3 Comments

Posted by on April 3, 2014 in Disability

 

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The power to overcome

His pain level was nine out of 10. Confined to his hospital bed, sweating and aching all over, he could hear his skin crackling, the result of gas gangrene inside his legs, caused by bacteria eating away at his muscle tissues

via The power to overcome | The Fairfield Mirror.

 

 
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Posted by on April 3, 2014 in Disability, health

 

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Trying to find my feet again

 

I will try to continue posting pertinent information on this Myositis blog but anybody who remembers my Comedy in Crisis blog find my new blog details below.

Yes, I know I ‘m being doff for trying to continue blogging, but the truth be told, I find I missed you all big time and the facebook open groups didn’t quite fill my need for good fun and interaction with my bloggy friends.

I have changed my humour blog to MIRTHILESS which you should be able to find here http://mirthiless.wordpress.com/

http://mirthiless.wordpress.com/

 
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Posted by on April 2, 2014 in Uncategorized

 

The end is arriving faster than I like

To all my loyal friends and viewers just a short note to advise that due to the progressive weakening of my arms and hands I am finding it too difficult to type long blog posts  I spend the majority of my time fiddling on facebook now. If you wish to keep in contact find me and ‘friend’ me on facebook https://www.facebook.com/roly.clulow    .or join me on the myositis group https://www.facebook.com/groups/7950401889/

Keep well until and if we meet again.

Will miss you all very much

Roly

 
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Posted by on February 20, 2014 in Uncategorized

 

Dignity South Africa | A Basic Human Right to Die with Dignity?

 

A Basic Human Right to Die with Dignity?

The world is talking about assisted dying like never before, with 90% of people in France in favour. Vermont has become the 4th State in the USA to legalise voluntary euthanasia and 4 out of 5 people in the UK being supportive. A recent News24 poll indicated that 22,000 South Africans were in favour of assisted dying opposed to just 2,000 against.

Dignity South Africa | A Basic Human Right to Die with Dignity?.

 
3 Comments

Posted by on February 12, 2014 in Disability

 
 
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