Tag Archives: Health

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 UK murder: Mom struggled to cope.

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Posted by on April 24, 2014 in Disability


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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


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


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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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Steph Hicks tells her story

September 21st is Myositis Awareness Day.

To do my bit towards raising awareness, I am posting a series of mini blogs over the next few days to give a bit of insight into what it means to live with myositis. I’m not moaning or complaining, or even looking for sympathy. I’m just explaining what the disease is and what impact it has on my life. There are many others whose struggles are much harder than mine, but I can only say how it is for me. What I’m describing is a normal day. Some are better, some are worse.

7.15am Wake up facing middle of bed, head has slipped off pillows during the night. Need to turn to other side to switch off alarm. Can’t move. Spend several minutes shuffling hips so that I’m on my back. Now need to lift head onto pillow to complete the turn. Heads are heavy, it’s not happening. Starting to panic. Laying on good arm so can’t push pillow out of bed. Finally summon up strength to roll head onto pillow, then the roll onto left side is relatively easy but we’re not finished yet. Push legs out of bed for leverage and push into sitting position on edge of bed. Alarm now shrieking so turn it off. Need the loo, try to stand up but so exhausted from turning over legs won’t do it. Pile pillows up properly, put head on pillows. Swing one leg into bed – easy. Other leg? Dead weight, takes ages. I’m freezing cold and still need the loo. Happy Tuesday everyone.

Another day waking up feeling drained, like I’ve done a 10 mile run in my sleep. After the trauma of getting my aching body moving (described yesterday) I manage to get out of bed and head to the bathroom. You have to time it just right, myositis muscles can be a bit unpredictable. Too soon and nothing will happen, too late and – well never mind. Anyway, having progressed through all the toilet seat risers, even the highest one is no good to me now. Occupational therapist recommended a powered toilet riser at the beginning of this year but social services are still haggling with the council over who’s going to pay for it. So I have to manage without sitting down. Great fun with a broken leg! Then into the shower, wash my hair one handed, hanging on with the other so as not to fall. Towels are heavy, so hard to get dry. Leave hair to drip until sitting safely on the bed again and can towel dry. Hair drier is also incredibly heavy, the whole procedure is exhausting and I’ve still got to get dressed. That’s the next story…

So, what to wear today? Can’t manage zips or buttons so we’re looking at elasticated waistbands – not too elasticated or weak hands can’t pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that don’t look too bad and go on easily so that’s what I live in. Leggings are an option if I’m feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. It’s too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat (but not too flat) no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words I’m dressed and ready for a nap. Even the simplest tasks are completely exhausting and once you’ve used up your energy for the day you don’t get any more. You have to weigh up everything you need to do in the day and ration your activity so that you don’t burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – it’s a bit like stretching your bank balance to the end of the month, only you’re stretching your energy until the next sleep. And every day is the same. We don’t get days off from this disease. I wish we did.

At last – showered, dressed and ready for the day. I gather up some washing and put it in a canvas shoulder bag to carry down stairs. Collect up phone, iPad, coffee cup and sit on stairlift. Oops, forgotten panic alarm pendant. Put everything down, heave self off stairlift and fetch pendant. Back to stairlift and load up again. Downstairs, take washing to kitchen and load washing machine, drop 2 socks and a pair of pants on the floor. Fetch picky-up thing from by front door to retrieve items from floor, spend 10 minutes squeezing Bold 2in1 out of stupid bottle. Half fill kettle (full kettle too heavy to lift) and feed cat and dog. Cat is easy, she has her food on a work surface so dog can’t steal it. Put dog’s breakfast in her dish, put dish in long-handled dustpan and lower to the floor. Clever eh? Make coffee and carry to my electric riser chair in front room. Go to porch to check for post. 3 letters on the mat. Fetch picky-up thing from by washing machine and poke letters around the porch until it becomes apparent that they will have to stay where they are until Colin gets home. Back to kitchen, get bowl of granola for breakfast and take to my chair. Check laptop, phone, iPad, work paraphernalia and crutches all to hand before sitting down. Still working from home while broken leg mends, so that’s me settled for the morning. I’ll work till lunchtime, then this afternoon I’m going on an adventure 🙂

My afternoon adventure was a trip to the John Radcliffe hospital to see my consultant. The only thing I really wanted to talk to him about was the new drug trial that we’ve heard so much about, and it looks as if it really is going to happen. The big noises are meeting at the end of next week to sort out the details, they don’t know yet what the criteria will be or how many centres will be involved, and they don’t know exactly when it will start. They seemed confident though that it will go ahead, and that’s great news for all IBMers, even if we don’t all get on the trial. At least something is happening after all these years of nothing, and if the drug is proved to work we’ll all get it in the end.

An adventure in the afternoon isn’t really a good thing. Myositis makes you horribly tired, and by mid afternoon I can hardly keep my eyes open. So an afternoon nap is part of the daily routine and if I time it right I can wake up with enough energy to get through the evening. As long as I don’t try to do anything strenuous of course, like cook dinner or eat it or, heaven forbid, GO OUT!! Anyway, no nap today so when we get back from the hospital I potter about doing a few chores, staggering and dropping things until Colin gets cross and orders me to sit down. How did I become this person? My real self is always busy, loves line dancing, walks the dog, bakes bread, cleans the house, runs upstairs, goes to the gym (admittedly mostly to sit in the jacuzzi), visits friends, goes shopping…… Where did I go? Well, I like to think I’m still here, buried under a layer of myositis that I will escape from one day, like a snake shedding its old skin. The new drug trials are a glimmer of light at the end of a very long tunnel but there’s not going to be a miracle cure, not yet, just a chance that the disease process might slow down, might stop, might even be reversed a bit. You have to have hope, or you’ve got nothing. So I head off to bed on my stairlift, the dog races ahead to stake her claim on half the bed (the middle half). It’s best not to disturb her once she’s settled, or you get a hind paw jabbed in your ticklish spot just as you’re falling asleep. In the morning it will all start again, just the same as today feeling exhausted, achey and weak but with the added bonus of sore muscles from today’s adventure. And if you see me tomorrow you’ll think how well I look, and you might even ask me if I’m feeling better. And I might smile and say thank you, I’m fine. Or I might poke you in the eye, you can’t rely on my good nature to that extent.


Posted by on September 25, 2013 in health, IBM, myositis, Reblog


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Invitation to submit information for posting or become an author on this blog


To post on this blog or become an author 


I   would like to invite anyone who has a story relating to myositis or disability to submit their their story or post for publication on this site or if you would like to contribute regularly I will “appoint” you as author and you will be able to post at your leisure.


Patients, Carers and Family that have been affected by this horrible disease.

Please feel free to submit articles for publication or become a regular contributor to this interactive site.

Let me know in the comments section below or email me


Posted by on September 20, 2013 in Disability, IBM


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MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online


MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMDMDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policiesChronic, debilitating diseases like amyotrophic lateral sclerosis and muscular dystrophy take a toll on families and society that goes beyond medical expenses. Putting a dollar amount on this toll will help guide the drug development industry and policymakers.Article Highlights:MDA has funded the first-ever study in the U.S. estimating the annual cost of illness in terms of medical costs, nonmedical costs and loss of income for families affected by amyotrophic lateral sclerosis, Duchenne muscular dystrophy and myotonic muscular dystrophy.The study has implications for companies seeking to develop drugs for neuromuscular disorders; for the design of social and economic policies that pertain to families with these disorders; and for individuals seeking insurance or government program coverage of treatments for ALS, DMD or MMD.”This valuable study provides us with a way to translate the adverse effects of our diseases into dollar terms, the universal language of decision-makers and the policy arena,” said Jane Larkindale, MDA vice president of research.In a two-minute video, MDA Senior Vice President of Advocacy Annie Kennedy explains the value of the study for individuals.BY MARGARET WAHL ON AUGUST 14, 2013 – 4:00AM

via MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online.

via MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online.


Posted by on September 15, 2013 in Disability, health, IBM


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It’s substance abuse folks

You can change the name to any city or town in South Africa or elsewhere in the world and this story would still be true after slight adjustment to numbers.  This is the single biggest problem that the world faces today. Global warming, war, famine and disease fade into insignificance in its shadow. 

alcoholic 2

MADISON COUNTY — Wouldn’t it be nice if more of our problems were simple? Sometimes it seems that everything is connected to everything else. Take our overcrowded jail.The vast majority of crimes committed today have their roots in some kind of substance abuse. Whether it is murder, assault, robbery, breaking and entering, domestic violence, DUI or public intoxication, substance abuse is generally at the base.Numerous studies put the percent of the population with substance abuse issues anywhere between 5 and 10 percent of the total population. This means there would be over 4,000 people with substance abuse problems in Madison County based on the 5 percent model. Our jail is designed to hold approximately 200 but frequently averages over 250 guests.  We have been learning that incarceration is an expensive but ineffective means of addressing substance abuse issues.Jail/prison overcrowding is caused by the increase in the growing number of crimes caused by substance abuse. Madison County, like many other Kentucky counties, is utilizing home incarceration programs to help alleviate jail overcrowding and save taxpayer money. These inmates have electronic ankle bracelets that track their movements. If they move out of designated areas they are targeted to be re-arrested.Home incarceration is a good first step, but this is where it starts to get complicated. A substance abuser has little chance of overcoming their addiction without some form of professional treatment. Substance abuse treatment services are very limited in Madison County and can only serve a fraction of the addicts.I am not sure the county could build a jail big enough to hold all the addicts. Are you starting to get the picture?Can we at least talk about what can be done to slow the flow of new addicts into our population? You remember the old saying, “An ounce of prevention is worth a pound of cure.” How much better is it to prevent a person from becoming a substance abuser in the first place?Prevention must start at an early age. Studies have shown that a child who drinks alcohol before age 14 is seven times more likely to be alcohol dependent than a person who waits until age 21. Recent research indicates that alcohol and tobacco are bigger gateway drugs than previously thought.Many local governments are enacting Social Host Ordinances that hold adults accountable for alcohol being served to minors on their property. This serves to act as a deterrent to underage drinking. Sixty-nine percent of high school students responded in a survey that the alcohol they drink is at a friend’s house.All three of our local governments adopting a joint social host ordinance would be a small step toward preventing future substance abusers.You can learn more about social host ordinances doing an Internet search.As always I am appreciative of your thoughts on these and other issues in our county.

via It’s substance abuse folks » Viewpoints » The Richmond Register.

via It’s substance abuse folks » Viewpoints » The Richmond Register.


Posted by on September 12, 2013 in Alcoholism, health


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