Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
For four weeks, I got to work part time because I felt good. Some days I worked seven hours. Last week I couldn't work much. One day I had to leave after two hours. This week I haven't worked at all. I am on absence with leave so my job and my benefits are safe. I am just not getting paid. I am interested in hearing how some of you coped with getting back to work. I have been on Mestinon for two months. Prednisone for 6 weeks and Imuran for two weeks. I appreciate any advice or sharing. HUGS to my friends here! Barbel
Annette
Lisa
I was in Health Care Administration for the last 25 years and absolutely loved my job. After my Thymectomy I was able to return to work but only lasted 6 months before my Neurologist and PCP deemed me totally disabled. I must share with you this was devastating to me as I have always worked, I am now on SSD and by the grace of God had disability insurance so even though MG forced me into early retirement financially we are okay. However, the major adjustment in my life style is playing a toll on me mentally. Some days I wake up and think wow I could work and then after just a short hour or two I am reminded through fatigue, SOB, droopy eye and just total weakness that there is no way I could ever hold a job :(. As mentioned in another comment, I have also read that people do get their normal life back just keep BELIEVING!!!
God Bless,
Charlotte
Once you start treatment, things start to come around after a few initially hard weeks. I don't think you would be able to tell what most of us have by looking at us, now. I sometimes stumble awkwardly and can appear intoxicated, I suppose, but only when I am really tired. When I'm like that I can do a scary-accurate drunk impersionation, like Foster Brooks.
The good news is we are covered by the Americans with Disability Act, so even if you don't get full disability, you can still request "reasonable accomodations" and your employer has to give them to you. For me, that minimum would be a chair to sit in while I work on the computer.
The second part is how you want to talk about MG with your employers. They don't have any legal right to know, but keeping that part of my life a secret would be pretty hard. With the Affordable Care Act (Obamacare), we cannot be denied coverage because of pre-existing conditions (in New York we have had this for a while, the rest of the country starts in 2014). Keeping this a secret so future potential-employers will not use it to discriminate in any hiring decisions about me is a consideration. If my current employer discriminates against me because of my MG (or fires me for other reasons, but gives the impression it is because of my MG), I can hire an employment lawyer. If they don't know what I have, they can't discriminate. So that's one reason to tell your employers.
My friend Sue Klinger (on the board of the MGFA) is the real expert in this as she was a top HR person at Citibank and knows the HR stuff backwards anjd forwards.
I would be curious to know if other MGers told their employers about their diagnosis (or non diagnosis, in many cases).
~Joe
I could manage, the programs would grow and change above my energy level. This last one I have been able to stay with for 7 years. Some employers I have been able to tell and others not. I have found a number of helpful tricks. Some from being a therapist who for years thought others techniques for work simplfication/energy conservation. Could probly write a book, ha ha if I had the energy. But I am always learning new tricks from others, and it is nice to share ideas to help keep us in action.
Wing back chairs - with a nice neck supporting corner, lovely.
I find lap tops work better for me than desk tops, less head movement. I will bring in my own rather than deal with the neck strain of an offices standard set up. I travel and so can't adjust the height, or level of what I'm working off of to cut down on movement. My arms and hands are down so not working to hold them up when using a lap top. if I will lay the keyboard on my lap. Some key boards have stiffer keys and are more tiring. Small screens are less visually tiring than large ones. Mobile apps are great single lines with minimal gaze shifting. I will read off my phone using "tunnel" vision for email even though its on the computer. Some days even an iPad is heavy. I weigh all kinds of things with a luggage scale to be sure I cut down the weight. Purses, 3 for a variety of purposes- 1 a cute belt clip to keep weight of of my shoulders, all light. No heavy coats to work, to heavy on the shoulders, just warm ones and I live in a northern state. All my carrying bags are light but strong material, shave off every once I can. Keep a luggage cart in my car. A properly loaded cart can move laptop, equiptment, a full bin of therapy equiptment and only have a pull weight of less than 10 pounds. I analysis everything and take no simple habit or task for granted. Every bit of energy saved can be used for something else. I getting long and run on. Have fun seeing what strategies you can find to help. Even turning a chair backwards and using it for front trunk support is an option with an added elbow prop.........
This thread reminded me to take breaks and rest. I will try. I use FMLA and am case managed through our benefits department. I am eligible for reduced retirement in 4 years, hard to walk away from that. Hugs to all. Take Care.
Barb
Jerry, I hope this helps.
Barbel
terry