Still Ambulatory but struggling...what can we do to help our son?
I am new at this discussion thing. I hope I'm doing this right. I'm seeking help for how to move forward. I feel so overwhelmed and would appreciate insight on what we need and how to proceed. Our DMD child, Thomas, is almost 9 years old. He has lost most of his quad strength and needs help rising from the floor just about every time. I'm upset by how much strength he has lost. Would a lift help to get him up off the floor. Is it time for us to get a handicap accessible van? Where do I start to look for these items? Please advise.
Replies to This Discussion
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Permalink Reply by Karen flor on
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Hi...I'm not sure how much help I can give, but I'll share our experiences in hopes that you can get something from them...
My son also needs help up from the floor,but the only lift I know of is me{or another adult} have him sit and you go at him from behind under his arms..trying of course to use your legs to lift not your back....You didn't mention if he's still walking,but I'm assuming he is..we got our son a scooter..Pride go-go elite...It can be broken down in just a few seconds and all the pieces{5} are light...it should fit in any trunk...but I think a SUV or mini SUV is easier..This has been wonderful for him...He is very active and this gives him the freedom to move his body the way his mind wants to.....It also helps keep him from getting tired....I don't know which doctors you've seen....we started with Dr. Wong in Cinci...she's fabulous!!!
She put Lucas on a 1600-1800 calorie a day diet and he lost 10lbs in 3 months..this also helps him get around easier.I think you should get a handicap parking sticker if you don't have one, but a special van as I understand is only when he goes into a powerchair full time....I hope this helps.....any questions just ask ...Karen Flor
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Permalink Reply by cheryl cliff on
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We just hit a "milestone" with our son too. Alex is 12 and today his PT said he can't go (on his feet) much longer. I fully respect this professional and although it was tough to hear, she only mentioned her opinion for what we've already been seeing lately anyway. We already have an accessible van, scooter & manual chair, some ramps at home and plans to install an elevator soon & incl bathroom/doorway remodeling, to be done (hopefully) by summer. We are also going to get a perscription for a power chair from our Neuro. After those items are crossed off the list we will obtain a second accessible van since discovering when you become dependant upon van lifts, and they fail, its best to have another option at the ready.
That said, we purchased our Toyota Sienna & financed thru Toyota. They have lift systems they will finance and provide a small rebate to handicapped purchasers to help assist with the additional costs of the lifts. Purchasing that van took the better part of 9 mos from when we decided, researched, purchased & added equipment and actually took it home. Your processing may not take that much time but it can be a more lengthy process than just securing a typical auto. You can see Toyota options at Toyota.com.
You also might want to contact your Neuro to obtain an Rx for the pieces of equipment needed (chairs & such). Getting the scooter & chair (for us) also took more time than I'd have expected. Some of the delays were related to ins coverage & approval plus ordering specific things, fine tuning them to best work for our son.
We also hooked up with a good ortho guy, PT & OT. Our OT taught me something important awhile back...try to obtain equipment in advance of actual need. Then you've got things in place at the right time plus when something has been sitting around awhile its easier for the entire family to become adjusted to the thing. As we've followed that advice and read some stories from other families who couldn't, we've felt relief and a little on top of things. Eliminating some stress as the disease progresses is good for the family. In some small way it is a blessing to be ready in a disease that nobody has control over.
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Permalink Reply by Penny Hauer on
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Dear Debra the first thing to do is take a long deep breath. to me as long as you can help him up do it then each day will tell you what to do just breath and relax if you believe in prayer do that first. as things contuine to happen he will look to you for support I am very new to this site as well and not a very good typist forgive any misspelled words. I want to hurry everything up but that is not always the right thing to do. there are so many helpful things at different sites you can always look for all the things you might need so you have am idea so you know what to expect. He may stay as he is now for a while or not one does not know how fast things happen my Caleb has been very good for so long now it is all changing the falls are not every day but sometimes every hour he does take his chair when we go out but NEVER to school he does not want to be different. its the little things like opening the car dooe and crawing in somethiimes holding the leg and getting it in.opening chip bags and the list goes on but I let him tell me when he is done or to tired I did get the power chair early as we live in Ca and everything takes longer and there is not much money here . I hope alittle of this helps you I like you am learning as we go. stay stromg I have silent screams I could never fold cause Im Calebs glue. I was at his birth and I brought him home from the hospital at 4 days and we have a very special relationship. I have never had such a hard time with a disability we have down sym and cp kids but this dmd is terrible as you know but with God and help from those who know we will fight till we can fight no more. much care and understanding sent your way hope to hear from you. Penny
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Permalink Reply by Debra Canter on
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Thank you Karen, Cheryl and Penny. We lack the finances and know how to do what we want to do but you are right Penny..take a deep breath and pray. We would like to do an elevator, what can you tell me about the one you are putting in (Cheryl). I found a smidge of comedy in your reply Karen...indeed I am his lift but I'm realizing his 60 pounds are hard to lift and he's only going to get bigger. We have a Go Go scooter, he uses it at school as needed. I know of Dr. Wong..we see Dr. Connolly in St. Louis. We do have handicap placard and yes it has been such a help. thank you again ladies for taking the time to share with me. I find comfort in knowing I do not go this alone.
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Hi Debra
The exact model of elevator we are planning to install hasn't been selected just yet. My husband and I couldn't manage to come to a conclusion on which one to install and left it to our architect to decide. It will be small/residential and be able to take up to 750lbs. It will have an "L" configuration whereby one enters in one door and can exit via another door. That eliminates the need to have a 3' radius inside & fits our home.
There are many options, way less expensive than a residential elevator. For example we researched the "chair lift" systems that can typically go in a standard stairway with the least expense. You've probably seen them, a seat is attached to the base of the stair wall, seat folds down for use & up to remain out of the way the rest of the time. I've seen them for as low as $1200.00 installed. Then there is a "glass tube" type of residential elevator whereby it uses suction to get to the second floor. No jack-hammering into the foundation of the house is necessary. Snap on parts and looks pretty cool, modern. We decided against that one because there are limits re:weight capacity. Plus many others too.
Glad you are feeling like you aren't in this alone!! Please know we are here anytime you need, ask anything :)
Debra Canter said:Thank you Karen, Cheryl and Penny. We lack the finances and know how to do what we want to do but you are right Penny..take a deep breath and pray. We would like to do an elevator, what can you tell me about the one you are putting in (Cheryl). I found a smidge of comedy in your reply Karen...indeed I am his lift but I'm realizing his 60 pounds are hard to lift and he's only going to get bigger. We have a Go Go scooter, he uses it at school as needed. I know of Dr. Wong..we see Dr. Connolly in St. Louis. We do have handicap placard and yes it has been such a help. thank you again ladies for taking the time to share with me. I find comfort in knowing I do not go this alone.
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Permalink Reply by Tamara Walters on
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We are at the very same stage. I have found that a can still lift Zach by using leverage. He sits in front of me and I hold both his hands. His legs are slighty bent and I step on his toes and pull. He stiffens his legs and that uses the leverage to get him up quicker. Also, we are looking into getting an electric Turny seat for our minivan since Zach is having trouble getting in and out of the car. It swivels out and lowers and then goes up and turns back into place, using a remote. We feel this could be useful for a while, but not sure if it will be used long enough to justify spending the money. Anyone have advise on that ? Am I kidding my self to think he will not be in a wheelchair fulltime for several years ? He is eight now.
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Tamara,
We looked at this as an option but we felt that in only a few years we would be needing an accessible van and would be wise to spend any money towards that investment. Thomas is almost 9 and just in the last several months we've seen weakness we had hoped not to. What makes this process so difficult is having to be honest with the situation and realize that we have no choice but to move forward and make some tough changes. There are days I just bawl and don't know how to proceed. I have learned to accept these days and know that they are just a part of it all.
Tamara Walters said:We are at the very same stage. I have found that a can still lift Zach by using leverage. He sits in front of me and I hold both his hands. His legs are slighty bent and I step on his toes and pull. He stiffens his legs and that uses the leverage to get him up quicker. Also, we are looking into getting an electric Turny seat for our minivan since Zach is having trouble getting in and out of the car. It swivels out and lowers and then goes up and turns back into place, using a remote. We feel this could be useful for a while, but not sure if it will be used long enough to justify spending the money. Anyone have advise on that ? Am I kidding my self to think he will not be in a wheelchair fulltime for several years ? He is eight now.
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