Comments on: Tips and Tricks for LGMD http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/ Healing and Happiness Sat, 12 Sep 2009 23:19:12 +0000 http://wordpress.com/ hourly 1 By: espritcurieux http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-109 espritcurieux Sat, 10 Jan 2009 21:41:04 +0000 http://espritcurieux.wordpress.com/?p=20#comment-109 Hello Dennis, I don't live in the States, but there is a Facebook group called Limb Girdle Muscular Dystrophy with lots of members who could give you some ideas. I believe there has been some discussion about funds for college. As for research, do you know what type of LGMD your son has? The Jain Foundation is an excellent resource for people with LGMD 2B and MM (dysferlin deficiency). If you don't know what type of LGMD your son has, they might also be able to assist you with his diagnosis. The following link might also be helpful if you're trying to find the specific diagnosis for your son. http://www.clinicaltrial.gov/ct2/show/NCT00457912?term=lgmd&rank=3 Hello Dennis,

I don’t live in the States, but there is a Facebook group called Limb Girdle Muscular Dystrophy with lots of members who could give you some ideas. I believe there has been some discussion about funds for college.

As for research, do you know what type of LGMD your son has?

The Jain Foundation is an excellent resource for people with LGMD 2B and MM (dysferlin deficiency). If you don’t know what type of LGMD your son has, they might also be able to assist you with his diagnosis.

The following link might also be helpful if you’re trying to find the specific diagnosis for your son.

http://www.clinicaltrial.gov/ct2/show/NCT00457912?term=lgmd&rank=3

]]> By: Dennis http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-108 Dennis Sat, 10 Jan 2009 20:36:41 +0000 http://espritcurieux.wordpress.com/?p=20#comment-108 My nephew was diagnosed with LGMD recently. He's 18 and looking forward to college. Any ideas on where we could look for help paying for college. He wants to go to a state school in Pa. Also, where do you find the latest research ideas. My nephew was diagnosed with LGMD recently. He’s 18 and looking forward to college. Any ideas on where we could look for help paying for college. He wants to go to a state school in Pa. Also, where do you find the latest research ideas.

]]> By: NP http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-77 NP Thu, 11 Sep 2008 21:46:25 +0000 http://espritcurieux.wordpress.com/?p=20#comment-77 Thank you listing your ingenius solutions. I am an O.T. and, you are right, we are not all familiar with LGMD. Our training is generalist, and we become more specific based on the types of people we help. I have been an O.T. for 30+ years and have just begun working with a student diagnosed w/LGMD. Your comments are extremely helpful. Thank you listing your ingenius solutions. I am an O.T. and, you are right, we are not all familiar with LGMD. Our training is generalist, and we become more specific based on the types of people we help. I have been an O.T. for 30+ years and have just begun working with a student diagnosed w/LGMD. Your comments are extremely helpful.

]]> By: Lenda Humphrey http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-67 Lenda Humphrey Thu, 07 Aug 2008 13:00:44 +0000 http://espritcurieux.wordpress.com/?p=20#comment-67 Thank you for this..I have LGMD myself and some of these tips really help.. drying my hair is the worst!! Thank you for the tips and I will be looking up John on YouTube!! So thankful! Thank you for this..I have LGMD myself and some of these tips really help.. drying my hair is the worst!! Thank you for the tips and I will be looking up John on YouTube!! So thankful!

]]> By: espritcurieux http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-38 espritcurieux Tue, 01 Jul 2008 14:59:08 +0000 http://espritcurieux.wordpress.com/?p=20#comment-38 Margaret, thank you for your comment! I need to be reminded to keep active, because there are some days when I just want to slack off. Like you said, we can’t afford to. It’s also wonderful to hear that you’re happily married to a great man, and so helpful and handy too! It’s nice to know that having a good relationship is possible despite the LGMD. Margaret, thank you for your comment! I need to be reminded to keep active, because there are some days when I just want to slack off. Like you said, we can’t afford to. It’s also wonderful to hear that you’re happily married to a great man, and so helpful and handy too! It’s nice to know that having a good relationship is possible despite the LGMD.

]]> By: Margaret http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-36 Margaret Tue, 01 Jul 2008 10:39:55 +0000 http://espritcurieux.wordpress.com/?p=20#comment-36 The methods you have described so well that make it possible to live a relatively normal life are pretty much the same ones that I use. My LGMD has been slowly progressing for over 50 years. When I had major abdominal surgery 6 years ago I insisted that they heve me up on my feet walking within 24 hours after my 6 hour surgery. In LGMD you cannot let muscles go unused for too long a time. Then I spent 2 weeks in a rehabilation hospital to help me get back on my feet as quickly as possible. The physical therapist there was amazed at what all I could do considering my extensive weakness. What he was not considering was the amount of time I had to make adaptions as my body grew weaker. He was used to seeing patients whose disabilities were thrust upon them in the blink of an eye. I had years to find ways to do things by using different muscles or things around me to make it possible to "keep on keeping on" as the strength in my back, hips and legs weakened. When I applied for Medicare Disability, the Doctor that I was sent to by Medicare said, after spending 15 minutes examining me, "I can't find anything in you that supports your ability to walk, yet you walk quite well". Again, he was not considering how gradual the loss of that ability with the usual methods was. My husband has been a great help in helping me to adapt. He is always there to help, but gives me time to try my own methods first. His ability to solve some of the problems I have faced always amazes me. I have an elevator that he made from a mechanics lift table. It gets me from the garage level up the 30 inches to the house level. He raised my toilet 7 using a hand made wood form, then invented an attached foot stool that is attached to the toilet, but has a handle that pulls the foot stool up under the front of the toilet and out of the way so I can sit down and get up easily. I love to garden and spend a huge amount of time in the yard tending my flowers. Hubby made a trailer that I can pull behind my scooter loaded with whatever I need. All in all, life is good. The methods you have described so well that make it possible to live a relatively normal life are pretty much the same ones that I use. My LGMD has been slowly progressing for over 50 years. When I had major abdominal surgery 6 years ago I insisted that they heve me up on my feet walking within 24 hours after my 6 hour surgery. In LGMD you cannot let muscles go unused for too long a time. Then I spent 2 weeks in a rehabilation hospital to help me get back on my feet as quickly as possible. The physical therapist there was amazed at what all I could do considering my extensive weakness. What he was not considering was the amount of time I had to make adaptions as my body grew weaker. He was used to seeing patients whose disabilities were thrust upon them in the blink of an eye. I had years to find ways to do things by using different muscles or things around me to make it possible to “keep on keeping on” as the strength in my back, hips and legs weakened.

When I applied for Medicare Disability, the Doctor that I was sent to by Medicare said, after spending 15 minutes examining me, “I can’t find anything in you that supports your ability to walk, yet you walk quite well”. Again, he was not considering how gradual the loss of that ability with the usual methods was.

My husband has been a great help in helping me to adapt. He is always there to help, but gives me time to try my own methods first. His ability to solve some of the problems I have faced always amazes me.
I have an elevator that he made from a mechanics lift table. It gets me from the garage level up the 30 inches to the house level. He raised my toilet 7 using a hand made wood form, then invented an attached foot stool that is attached to the toilet, but has a handle that pulls the foot stool up under the front of the toilet and out of the way so I can sit down and get up easily. I love to garden and spend a huge amount of time in the yard tending my flowers. Hubby made a trailer that I can pull behind my scooter loaded with whatever I need. All in all, life is good.

]]> By: annie http://espritcurieux.wordpress.com/2008/06/30/tips-and-tricks/#comment-35 annie Tue, 01 Jul 2008 04:31:37 +0000 http://espritcurieux.wordpress.com/?p=20#comment-35 Thanks for sharing, Amanda! It is nice to know you have positive attitude and you find ways to help yourself. Thanks for sharing, Amanda!
It is nice to know you have positive attitude and you find ways to help yourself.

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