how do you deal with everyday life moving your kid from a place to another ?

hello everyone! My son just turned 10 and can no longer walk... What a birthday gift for such a young boy!!!  Life is getting harder now. Everything becomes difficult: get him to the bathroom, out of his bed,  carry him out of the swimming pool, carry him to the high chair for meals, help him get dressed, ...  he has a wheelchair, but I often have to carry him from a place to another.. Now I have pain with my wrist and have more difficulty  carrying him. Can anyone give me some advice about this moving from a place to another ? How do you do these usual things ?? with time he gains weight and I am very worried about the future... I hope you can share your experience to help me deal with the everyday life... regards, Michele

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Hello Michele,

I'm sorry to read that your son lost the ability to walk.  As I'm sure you know, resources and support varies based on where you live.  What many families do is rely on friends and extended family to help them with their son's care.  In some instances, there isn't support.  If you are experiencing injuries now, lifting your son over time will add to those injuries.  

What is needed is a patient lift to move your son from the bed and other places into his wheelchair.  Some lifts are portable and fit in smaller homes.  The lift uses a cloth sling to hold the person and they are lifted up and it has wheels to move to the next location where the person is lowered into place.  If you don't have the funds to buy something like this, is there a church group or other organization who can help you purchase a lift?  


Are their government or private disability services where you live that might help you find the things you need to help with your son's care?  It might take a member of a church or other private organization to help you find the services needed to help care for your son.  

Wishing you the best.

Brian

well i havent quite got to this point yet but i was told there are lifts that you can use to transfer him. 

Get a hoyer lift and get it NOW! You need to be very careful when lifting him, it could hurt your back and you need to avoid falls for him, especially if he is on a steriod. If you were to drop him, it could mean broken bones and surgery!

We have one from the MDA loan closet. If there is a Variety Children's Charity branch near you, they also have a loan closet. I think your insurance should cover this as durable medical equipment. With a diagnosis of DMD and the fall risk, you should be able to get one thru your insurance.

We have had ours about a year and use it to get him in and out of bed into his wheelchair. We also use it to get him from wheelchair to commode chair. Then we roll it right over the toilet. It is much safer, because a fall in the bathroom could be bad. (Hard floors, tight space, lots of things to hit your head on.) You may not NEED it yet, but it is easier and safer for everyone to go ahead and start using it now.

If you want a more permanent solution, these lift systems can also be installed on a ceiling track. We are building out our basement as an accessible suite which will have a ceiling track system, but for the time being we use an old-fashioned Hoyer.

I was quoted over $3000 for a lift. Went online and now 4 years later I own 3 of them and have gotten them for under $1000. I got them all used, all manual and right now they are the only lifts that my son will use. This is because the older lifts have a 6 point hook to attach the sling to but the newer ones only have 2. This two point configuration contorts my son like a pretzel and is very painful to him. Look at sites like ebay and kijiji for used medical equipment. I have found that this is always the best way to buy 90% of what Kyle needs. The rest, we can get funding for.

Hello Michelle - sorry about your son, this DMD club is hard sometimes. Some suggestions for assistance;We solved many problems using advice from others and then adapting it to suit our needs. Hope you can get the help you need soonest.

  • If your son is receiving regular physical therapy, (or not) suggest you bring concerns to the therapist and discuss your particular issues. The PT's for my son have been an invaluable resource for approaching and solving the daily challenges of transport, transition to/from wheelchair / toilet /  bed / chair / shower / etc.
  • Local MDA for you may be a resource for answering some problems. They have the experience and networking available.
  • Your child's Pediatrician or child's orthopedist should be able to offer guidance.

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