Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Hello. My name is Amy. My husband and i have 2 small children (prek n infant). My husband has sma type 3. He is 36 years old n was diagnosed when he was 10. He has limited mobility walking. Sometimes he uses a cane to walk long distances, mostly for balance. Over the years it has gradually decreased. He uses his calf muscles and lower back for walking and getting out of mostly taller chairs. Tuesday, he was turning around in our bathroom n lost his balance. He fell on the tile floor n broke his femur bone(near his hip). 4 paramedics had to pick him up off the floor and he was in so much pain. He has a high pain tolerance. He has fallen many times and knows how to brace himself to minimize his impact. this is the first bone he has ever broken. We are so fortunate that it wasn't worse. They transferred him to a physical therapy 24/7 place today. They say it takes 10 weeks to heal. The physical therapist will have to work with him differently and the recovery will be different. My question is what to do next realistically? Any recommendations for power wheel chairs? Where do u get them reasonably priced? Should we be looking at inhome assistance? Any recommendations on companies that are good? Installing lift systems? I'm new to all this and I don't know how to prepare for him coming home. Im not sure what all my options are. He's 170 lbs so I know I can't physically lift him. We live in a ranch style house with a wheel chair ramp to the front door. In our garage there are 5 to 6 small stairs. All of our furniture is relatively high. Any recommendations or resources would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2012 Report Share Posted March 16, 2012 Hi Amy. I am 42 and have type 3. I've had my share of falls but the only thing broken so far was my nose. I recently lost the ability to walk, up until about a month ago I could do very limited walking using a cane in one hand and holding on to walls with the other. I started using a power chair at work. It was paid for by a combination of my insurance (after appealing their initial rejection) and the Office of Vocational Rehab. OVR and a rep from the local Permobil dealer brought a couple chairs to my house for my to try. I ended up with the C400, which has been a real blessing in allowing me to keep working. The problem is we cannot transport the chair so I have to leave it at work and have my wife push me in a manual at home and when we go out to restaurants or shopping. The down side to this chair is that it's pretty big and heavy and I can't sit at a normal table with it. The seat does elevate, so I can easily sit at a bar or pub-style table. I had to give up driving last year but I took a driving rehab course and am now licensed to drive with hand controls. I'm trying to get a van I can drive from my power chair but right now we cannot afford it. OVR will pay for all the mods (power ramp, hand controls, zero effort steering and lowered floor) but I have to purchase the van. Unfortunately, I have no experience with lift systems or rehabbing a broken bone, but feel free to ask if you have any questions, either on the list or you can email me directly. I don't know how she does it but my wife does all my transferring using only a gait belt, and I'm just shy of 200lbs. Hope your husband heals quickly and you can find a physical therapist that understands SMA. Tom What to do next? Hello. My name is Amy. My husband and i have 2 small children (prek n infant). My husband has sma type 3. He is 36 years old n was diagnosed when he was 10. He has limited mobility walking. Sometimes he uses a cane to walk long distances, mostly for balance. Over the years it has gradually decreased. He uses his calf muscles and lower back for walking and getting out of mostly taller chairs. Tuesday, he was turning around in our bathroom n lost his balance. He fell on the tile floor n broke his femur bone(near his hip). 4 paramedics had to pick him up off the floor and he was in so much pain. He has a high pain tolerance. He has fallen many times and knows how to brace himself to minimize his impact. this is the first bone he has ever broken. We are so fortunate that it wasn't worse. They transferred him to a physical therapy 24/7 place today. They say it takes 10 weeks to heal. The physical therapist will have to work with him differently and the recovery will be different. My question is what to do next realistically? Any recommendations for power wheel chairs? Where do u get them reasonably priced? Should we be looking at inhome assistance? Any recommendations on companies that are good? Installing lift systems? I'm new to all this and I don't know how to prepare for him coming home. Im not sure what all my options are. He's 170 lbs so I know I can't physically lift him. We live in a ranch style house with a wheel chair ramp to the front door. In our garage there are 5 to 6 small stairs. All of our furniture is relatively high. Any recommendations or resources would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Hi Amy. My name is Susie, I'm 43 with SMA type 3 and have fairly limited mobility. The first thing is to make sure you're not hurting yourself in the process of helping your husband. We often focus so much on the disabled person that we don't notice the strain on our loved ones and caretakers. I'd recommend a Hoyer lift for transfers, it's worth the investment and will be helpful with moving him in the most comfortable way possible. You might check your insurance company to see if they'd cover in home assistance during his recovery. You're already taking care of 2 kids, it'd be a load off you to know his basic needs are being met. Then talk to a Rehab Specialist. That's who would know which chair is best for him. I know it's counter-intuitive but SMA patients should not be straining or exhausting themselves, it just speeds up progression. Conserve energy, conserve strength. It's a subtle difference but one that's important. Look into acupuncture. I know they can speed healing of bones and help all sorts of health issues from hypertension to blood pressure to depression. May not address the SMA but could help with chronic pain issues. Last thing, I'm a nut about healthy eating. Good, supportive nutrition can make a huge difference in how your body functions. Like good gas in the car, it's what your body uses to function. Good luck, I hope he heals easily. > > Hello. My name is Amy. My husband and i have 2 small children (prek n infant). My husband has sma type 3. He is 36 years old n was diagnosed when he was 10. He has limited mobility walking. Sometimes he uses a cane to walk long distances, mostly for balance. Over the years it has gradually decreased. He uses his calf muscles and lower back for walking and getting out of mostly taller chairs. > > Tuesday, he was turning around in our bathroom n lost his balance. He fell on the tile floor n broke his femur bone(near his hip). 4 paramedics had to pick him up off the floor and he was in so much pain. He has a high pain tolerance. He has fallen many times and knows how to brace himself to minimize his impact. this is the first bone he has ever broken. We are so fortunate that it wasn't worse. They transferred him to a physical therapy 24/7 place today. They say it takes 10 weeks to heal. The physical therapist will have to work with him differently and the recovery will be different. > > My question is what to do next realistically? Any recommendations for power wheel chairs? Where do u get them reasonably priced? Should we be looking at inhome assistance? Any recommendations on companies that are good? Installing lift systems? I'm new to all this and I don't know how to prepare for him coming home. Im not sure what all my options are. He's 170 lbs so I know I can't physically lift him. We live in a ranch style house with a wheel chair ramp to the front door. In our garage there are 5 to 6 small stairs. All of our furniture is relatively high. Any recommendations or resources would be greatly appreciated. > Quote Link to comment Share on other sites More sharing options...
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