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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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Mobile Tech Tips for Weak Hands

Technology has put the world into the palms of our hands through hand-held mobile devices such as the iPad, smartphone and e-reader. But when disability caused by muscle disease takes the “hand” out of “hand-held,” the tips and products detailed in this article may help.

Don’t hold it, mount it

“The No. 1 thing people can do to improve hand control of a device is to look for a way to mount it firmly so it doesn’t have to be held at all,” says RJ Cooper, engineer and owner of RJ Cooper and Associates, a California-based company specializing in special-needs software and hardware.

Popular mobile devices have a huge global market, so there are many relatively inexpensive accessories out there for holding your stuff.

Mobile Tech Tips for Weak Hands | Quest Magazine Online.

via Mobile Tech Tips for Weak Hands | Quest Magazine Online.

 
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Posted by on January 12, 2014 in Disability

 

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DIY Commodes

camping commode

 

The Camping commode

I wouldn’t cut the hole square, I would trace a toilet seat more oval shape!

 

The desperation commode

raised toilet seat

 
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Posted by on August 26, 2013 in Disability, health, IBM

 

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The 8 position bed lounger

Sponge supportBRILLIANT

 
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Posted by on August 19, 2013 in Disability, health

 

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disABILITY Information and Resources

 

Visit this very informative website it’s well worth it

disABILITY Information and Resources.

 
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Posted by on July 26, 2013 in Disability

 

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Disability grants difficult to get. WHY?

Disability grants difficult to get. WHY?

eacd8-ibmhoist2

Many, many disabled people cannot claim a disability grant merely because the joint income of husband and wife exceeded a certain amount, making the disabled partner totally dependent on the bread winner. In my case I can’t claim because my wife earns just over the said limit. I am married by ant nuptial agreement so legally what is hers, remains hers. Fortunately in my case my wife is a willing sharer.

 

If this was a scenario where the couple was estranged, how would the disabled person survive?

 

Johannesburg – Many disabled South Africans are living in poverty without access to the government’s disability grant, a University of Johannesburg study has found.

“Contrary to popular beliefs that the disabled live on social grants, the study found that 61% of the respondents interviewed in eight of the poorest wards in Johannesburg are not accessing the disability grant,” said researcher Lauren Graham.

The study into poverty among the disabled was conducted by the university’s centre for social development in Africa. Its findings were released on Friday.

Many respondents did not know about the disability grant or how to apply for it, said Graham.

Others claimed they did not have identity documents which would allow them to quality for the government grant.

Respondents also cited “red tape” and poor treatment by officials as reasons they did not make use of the grant.

Graham said people with disabilities were still experiencing discrimination and were being “pushed to the margins of society”.

Read more

http://www.news24.com/SouthAfrica/News/Disabled-living-in-poverty-study-20100514

 

 

 
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Posted by on July 26, 2013 in Disability

 

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Conversations with computers and others.

Conversations with computers and others.

computer kill

“Shane how do I get the computer to send this document via e.mail?”

“Like this Dad don’t be so “Doff”!!!!!” (Then in a blur of moving fingers tik tik tik tik tik

tik tik— much too fast for my ageing eyes and brain to comprehend) “There, you see, it’s

so easy.”

That’s when my pride kicks into gear.

“Yes! Sure. I can manage now thanks for your help.”

Right, now let’s see. He pushed this button, clicked the mouse on this thingy and then he

double clicked the mouse on this do dat and thennnnn, “You have made an illegal entry

and windows will be shutting down in 5, 4, 3, seconds”

NOOOOOOOOOOOO. HOW DO I STOP THIS THING!!!!!!!!!!!. HELP.

Damn it!! —- now where has the letter gone, or has it been lost in cyberspace, and I

didn’t save it to the ROM or RAM or CD, DVD, MP3, Stick, Stiffy or some other such

alien abbreviation. It took me an hour to type using the single digit method and now it’s

gone.

“Your virtual memory is low. Please wait while windows releases more memory”

“So now you insult me too. How do you know my memory is low. You don’t even know

how old I am you stupid machine.”

“Do you want to save your document before Windows shuts down?”

“Of course I do but I don’t know where you put it! You’re just trying to annoy me so I

won’t use you again. You’re so clever, you find it, and save it yourself. I didn’t even get a

chance to name the blasted thing and anyway I must be going, I have to take more blood

pressure medication.”

“You have a new message”.

Roy has sent you a Xmas greeting, click on attachment to view.

HAH now that’s easy. I just click the mouse on this paper clip and then———– “You

cannot view this message while you are off line. Do you want to go on line now?”

“It’s my message. How dare you tell me I can’t view it? Why did you tell me I had a

message in the first place? What do you mean I must go on line? You know I hate lines. I

never stand in lines for anything. GIMME my message”.

“Windows has detected a fatal error and will be shutting down in 10 seconds. Please save

all work in progress or it will be lost”. “THAT’S IT! —– I’LL FATAL ERROR YOU,

you @#$#%$#^%&*^%$ machine, no more, I can’t stand anymore of this”

“Shane please send an e.mail to all my friends and tell them to write to me because FRED

(Flipping Ridiculous Electronic Device) the computer and I have parted company and I

will not be using e.mail, or any other kind of computer generated mail for that matter,

ever again.

Does anybody know where I put my pen?”

 
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Posted by on July 25, 2013 in Disability

 

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