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...
My husband and I usually go up north in the summer for a few weeks.
Since my diagnosis and progression, I am leery of going that far from home now. The house is at least 30 minutes from a basic hospital. There's NO air conditioning at the house either and you know how MG and heat go together. NOT!
I've thought of offering/asking to pay to put in a window AC unit at the house so we can still go there. The inlaws really want us to come up and the heat is a deal breaker. (aside from being nervous about being far from home medical services)
Any suggestions?
Thanks
Carly
Since my diagnosis and progression, I am leery of going that far from home now. The house is at least 30 minutes from a basic hospital. There's NO air conditioning at the house either and you know how MG and heat go together. NOT!
I've thought of offering/asking to pay to put in a window AC unit at the house so we can still go there. The inlaws really want us to come up and the heat is a deal breaker. (aside from being nervous about being far from home medical services)
Any suggestions?
Thanks
Carly
The last 2 times I have gone more than 2 hours away I have ended up in hospital. Well not true, one time into hospital and the other should have gone but didn't.
Never works for me.
While traveling for the first time I made sure that I took advantage of the wheelchairs and the little carts that went between terminals. That was one of the best decisions I have made yet with MG....ration your energy. I'm not sure if you are flying or driving, but I thought it would be good to mention the use of transport aids at the airport for all here. I have long since gotten rid of my pride...my cane and common sense are the best travel comapanions
If you or your family can put an AC unit in the window, do it, its fairly inexpensive and well worth it, a fan may not be enough and as you mentioned medical help is not local. Heat and humidity are not a friend of those with MG.
If you decide to go have a talk with your neuro and work with your doctor to plan a safe trip, for me that included a session of IVIG to make sure I ad the strength for the trip for my daughters wedding.
Overall just be sure to plan ahead and don't be afraid to ask for help and have others help to make sure you have a fun and medically safe trip.
Take care Carly and the best of wishes. Just be sure to plan and work with your doctors and family to make sure it is a safe and fun trip.
Take care and I hope
Joe
Aloha,
Angie
Even if you use it, to cool only a room or two.
In a Stateside big-box store, you can buy a good-quality, Zenith 6,000-BTU unit - for $80 US.
It's reasonably quiet. And light enough - to be easily handled with two people.
Run it 24/7 - while you are there - to keep a room or two - at a good temp for you.
When you head back home?
Leave the A/C behind - for next year's visit!
- Ross