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...
After leaving the hospital on Monday, I was transferred to an Acute Rehab Facility. Day one was absolutely disappointing. I had not slept at all the night before and was so overwhelmed. It was a day of evaluation and I began to do things that I would do should I be home and I was devastated at the level of care and assistance I may require upon returning home. Today, after resting well I did absolutely great!. I am learning some really great tools to conserve energy.
I'm surprised that right from the very start, physical therapy, occupational therapy and speech therapy aren't services recommended to those of us diagnosed with this condition. I learned that through physical therapy we are able to create more receptors in our muscles, thus providing strength. Occupational therapy has suggested getting foam knee pads for when I need to get down and say wipe down the refrigerator or rearrange the pan cabinet.
Even though I am away from my family and I am being confronted with the reality that I am not able to do as I used to and am going to require some extra care, I am totally optimistic that this obstacle is just that, an obstacle that I will overcome and another chapter that has unfolded.
I'm surprised that right from the very start, physical therapy, occupational therapy and speech therapy aren't services recommended to those of us diagnosed with this condition. I learned that through physical therapy we are able to create more receptors in our muscles, thus providing strength. Occupational therapy has suggested getting foam knee pads for when I need to get down and say wipe down the refrigerator or rearrange the pan cabinet.
Even though I am away from my family and I am being confronted with the reality that I am not able to do as I used to and am going to require some extra care, I am totally optimistic that this obstacle is just that, an obstacle that I will overcome and another chapter that has unfolded.
Ann
Occupational therapy should be helpful with tips and tricks to use when you get home.
Creating a "new normal" when you get home will help. If the older boys don't already, include them in the daily chores of folding and putting up laundry, setting the table and cleaning up the kitchen and picking up their toys. The 12 year old or husband can even put the baby in the shower (if he is walking) or bath with him while you are sitting in the bathroom with towel, waiting for him to be handed off to you. The little one can learn that on some days (especially when you are weak), he has to come to you and climb up in your chair for some hug time. Adjustments that will become routine in time.
So happy you are on your way to renewed strength. Keep us posted on your therapies.
hugs
sherry
Ha
Ann
I love your optimistic attitude. Part of this disease is accepting it.
In time you will find little short cuts, on your own, to conserve energy.
Or if something doesn't get done...oh well...
Sending you hugs and strength,
Gail
-Ann I had an absolutley fabolous pt in the hospital that gave me a simple rundown. It is cool to know that there may be other ways to cope that is not medication. I feel like I am poisioning my body sometimes! I will be sure to share more information as I learn! :)
- Sherry You are absolutely right. The key to having a great family life and coping with this disease is delegate delegate delegate. I have set up a chore system where we do things together (i.e thursday is bathroom day where 12 year old does tub and mops floor, 9 year old does toilet and sink, and I do mirror and make sure all products and my hair is picked up as it is always all over the place lol.). Hugs to YOU! :)
- Gail After going from a non-stop career-oriented fashion fabolous mom, this condition has slowed me down, but has made me slow down and in the meantime I have learned to "smell the roses".. Simple things I now appreciate so much more and I have been so humbled and humility is such a more peaceful place to be in. I am watching almost every second of my son growth and have been there for every milestone. You are so right, a positive attitude helps so much. :)
- Debbie Yes it has, Hugs to you. :)
Congratulations!
Kimber