Tag Archives: Autoimmune disease


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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Posting for Myositis Awareness Day

A vivid description of a day with Myositis

Posting for Myositis Awareness Day

So, what to wear today? Cant manage zips or buttons so were looking at elasticated waistbands – not too elasticated or weak hands cant pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that dont look too bad and go on easily so thats what I live in. Leggings are an option if Im feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. Its 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 Im dressed and ready for a nap. Even the simplest tasks are completely exhausting and once youve used up your energy for the day you dont get any more. You have to weigh up everything you need to do in the day and ration your activity so that you dont burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – its a bit like stretching your bank balance to the end of the month, only youre stretching your energy until the next sleep. And every day is the same. We dont get days off from this disease. I wish we did.

via Facebook.

via Facebook.

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Posted by on September 19, 2013 in Disability, health, IBM, Reblog


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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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Wheelchair padded comfort cover

Wheelchair Chair Pad

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Posted by on July 24, 2013 in Disability


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Hand grip for weak hands

Great idea for helping those with weak hands


handle grips2

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Posted by on July 23, 2013 in Disability


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Wheelchairs and mobility beds


Wheelchair Quotations



Hello All.Please note we will be bringing in Mobility beds as well at a later stage.mobility bed


Elderly, infirm, and temporarily bed bound patients can use it as  bed, chair or just raise the backrest to read, eat, write, do computer work or just to ease pressure points.

Price and availability on request
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Posted by on July 3, 2013 in Disability, IBM


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