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My husband is 86; I am 71 and in good health. He has had this problem developing for the past 15 years but is still able to live independently with me. We are relying on some paid help and some family and volunteer help. I'm looking for comments from others who have similar challenges and hope to get some good ideas of how to make this as workable as possible for as long as possible.

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Funny how things work out- on previous posts I was busy reporting on the demise of the Scooter Store and a month ago I ended up moving my business into part of the nearby (very empty) Scooter Store building. Had a couple show up last week looking to have their SS scooter repaired- they said they couldn't figure out why Scooter Store wasn't answering the phone so they drove almost 2 hours to show up in person. Had to tell them they were out of luck- Scooter Store is long dead and I couldn't help them unless they were looking for innovative mobility products for bedroom/bathroom/etc. At least it was a good day for a drive!
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Nice to see this post pop up again. Scooter store is officially done for and number of scooters being covered by Medicare has sharply dropped.
karenqk- how are you doing with your husband? There are lots of mobility aids out there that could help you and your husband- it is especially important for you not to be injured. Check out abledata or contact me if you want suggestions.
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Reverseseroles- get a bedside commode at least she is not bm on herself.
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No problem- because of my background I gained some good expertise in mobility struggles and innovative products few people know about. If I can help anyone please let me know.
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Thank you, FriendlyBedGuy. The sliding transfer seat we got was the one by DuroMed. Regarding your trapeze idea, I think that may be an eventual course for us. I noticed several products on your website that I haven't seen anywhere else and which may be useful to us down the road. Best wishes to you.
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Jola- good luck. It sounds like you are handling things well. You mentioned sliding transfer seats- Drive Medical has a decent new one but the company EagleHealth specializes in many models if others are looking for help. You are using slide sheets in bed for moving him in many directions- still a strain for you and chance of abrasions. If he has any upper body strength he could use the three foot long trapeze (of Friendly Beds) to roll over, move up/down, across, and in/out of the bed. Allowing him to move himself around for comfort should help any bedsore issues which it sounds like is also a problem. Good luck.
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Karengk, my dad also has mobility issues, mostly due to severe balance issues following a TBI. A few things that have made living at home more doable for my parents are below.

- My dad has worn an external catheter at night for years rather than trying to get up by himself with a walker and risking a fall or wearing a brief and pads that would be soaked by morning. Last year, however, he started developing too much skin irritation and redness to continue to wear an external catheter and we were stuck.

But Googling 'alternative to condom catheter', I found Men's Liberty (BioDerm, Inc.), a different kind of external catheter that fits on the tip of the penis only. It uses a material called hydrocolloid, which is often used for wound treatments, instead of using latex or silicone. His Men's Liberty catheters are completely covered by Medicare (with a letter of necessity from his doctor) and the product has been like a miracle for us. (I believe it is also sometimes covered by the VA but was told only for active military personnel.) Note: We found that a few tips for wearing his MensLiberty successfully are: 1) use the BioPlus towelette as soon as you open the package and before it dries out, 2) dry thoroughly before proceeding, and 3) when applying the daisy pedals and the long strips, spend extra time on the underside--this is where it really needs to stick. I got great support and tips from this company's customer service folks.

- Adult day care for my dad by a widely-respected local organization has been of great benefit to both my parents-- the daily exercise and mental stimulation for Dad, the social aspect, the support and advice from staff, and more. Every hour on the hour clients get up and move to another activity room--very important for someone with mobility issues--so my dad was never sitting on his posterior for long periods of time during the day. And they would take him to the bathroom at scheduled times--typicaly 10:30, immediately after lunch, and 2:30 p.m.-- so he seldom was wet. Perhaps this routine Mon-Fri is part of what has helped him retain his daytime continence. Adult day care gave my mom some regular hours away from the house--so needed and beneficial. Only recently since having the shingles has my dad stopped going to adult day care and we miss those dear folks.

- I recently started using slide sheets to help move my dad up/down/left/right in bed and avoid skin tears. We use a much smaller version in the SUV to help him maneuver in his seat. (However, I've found I really have to be careful where I place the sheet under him--i.e. not close to the edge of the bed or SUV passenger seat--and not turn my back for even a second--or he could easily slip off and possibly fall. For safety's sake I remove the sheet as soon as we're done maneuvering, too.)

- I recently found a heavy-duty SLIDING transfer bench that can be used in my dad's shower (which he would otherwise have to enter by stepping over a 4-inch-high step). We put two bench legs outside the shower and two legs inside the shower. We then help him sit down on the bench from his walker, he moves his feet inside, and we slide the seat into the shower. (We've been leaving the cut-out part of the seat in and placing a folded, heavy bath towel beneath him, for cushioning.

- A ROHO cushion for the living room recliner and wheelchair has been very helpful after it was noticed Dad had developed a purple area on his buttocks from sitting so much (he's been on his feet less and in his recliner more since having the shingles last fall and increasing unsteadiness and balance problems.) Staying on top of skin issues in general has been very important.

- My dad has severe hammertoes and neuropathy, and regular foot exams and nail care from a podiatrist and special inserts from an orthotist has been a necessity. He's recently started wearing an AFO 'noodle' brace for his foot drop. Not only is this helping him pick up his foot better but his gait has improved. The thing was fitted to go inside the shoe and doesn't even show under pants, and Dad's been fine with wearing it daily.

- Life balance: You sound like a proactive type of person. Staying on top of things should be a great help. It's worth taking time to put together a plan that will work well for everyone and adjusting it when needed and as things change. Very best wishes.
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Hi FBG, I will look again, I didnt see your site on there. Yes the lifting and twisting on and off is the problem. If I were to hoyer her onto the toilet, how do I get her diaper off and on and dress her, I have to stand her to do that. I know, its nuts.She has no strength nor does she understand much but she sure knows when she is on it, because she goes as soon as I get her on . If you think of anything you can click on my name and write me. I am not a phone person as it takes me 2 hours to get her up, give pills and bathe, then 2 hours to feed. I have 2 hours for housework, bills, etc and I rarely get on the phone. I get online here and there because she cannot hear me talk and get confused. Thank you I think its impossible, even Hospice couldnt figure it out and bowed out on me.
RR
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You are right- I don't check my "wall" much. My website is on my profile which is allowed. If your mother has no upper or lower strength then it is only a matter of time before you are seriously hurt. If the toilet area is the worst spot perhaps adding a superpole there would be a great help to you if she has any strength to work with. If the lifting/twisting of getting her on a toilet is the main problem could hoyering her straight back onto a commode work out? Please give me a call and we can discuss. Best wishes.
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I do not know your website or I would. I have written on your wall twice but you must not check it. You can write on my wall. Mom has no strength that she understands how to use. She holds her head up, cannot walk or hold onto anything. Thanks, no one can answer it, I've asked a million people, but I thought I'd give you a try.
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RR- I can suggest different items that could help you but I need to know more about her situation- weight, any leg strength, upper body strength, etc. It would be easiest to talk- can you get hold of me thru my website? Thanks.
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Hi Friendlybedguy, I think I have asked before but not sure. I am getting good hoyering Mom into a wheelchair now, its taken a long time to learn how to get her in straight by tipping the chair, etc. My only huge issue is getting mom from the wheelchair onto the toilet and off the toilet. Shes 91 severe dementia but for some unknow reason she saves her bm's until she is on the toilet so I have lost caretakers and am ruining my arms and shoulders. Of course my husband wants an over head lift system of some type but money for that at her age and condition is not practical. Thanks for any info. IF anyone needs info on how to use hoyers just ask, Ive become quite good at it now.
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Update on Scooter store- about 1500 employees got notice of termination so it appears they are done for. There are other issues in the healthcare world (government "competitive bidding") which will likely cause 40% of the home medical equipment stores to close soon (many by July 1, 2013). Getting medical equipment (or even knowing about new products) is going to become more difficult (not what you want to hear). If anyone needs suggestions to address mobility problems I would be glad to help.
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I hope this is workable for the two of you for a long, long time.

Have you ever had a PT or OT come into your home and give advice about what can be done to make life easier for both of you? Do you need a customized van? A hoyer lift? A ramp to the front door? These professionals know of devices I'd never heard of. If you haven't had this service, or if your husband's needs have changed since then, ask his doctor to order such a visit.

Good luck to you both!
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Scooters may be a bit of a problem. Federal agents raided the Scooter Store headquarters last month and they are in big trouble. I would be glad to offer advice if you would contact me and let me know details on the mobility issues. I attend many national tradeshows and know of innovative products that could help.
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Getting Medicare to pay for a scooter or wheelchair is easier said than done I would suggest you contact the store you will be doing business with and find out from them what you specifically need from the doctor to get the items you need. Sometimes it's a prescription and copies of actual doctor's notes. We had a problem finding someone local and ended up purchasing the wheelchair my husband needed ourselves.
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If the doctor writes a prescription for a scooter please make sure he/she writes exactly what scooter and model because Medicare won't pay unless a specific item is written down. You may want to go to your local medical supply company and ask them first what scooter and models Medicare will and will not pay for. Plus some medical equipment Medicare only pays for one item every 5 years so please check first. This happened w/ my mother when she needed a walker. Just an FYI. Hope this helps.
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This website is so great, ask a question and get so many helpful answers. Love all you guys.
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There are many devices to help transfer someone from a wheelchair to a bed or from a whchair to a shower (hopefully your husband is not climbing in/out of a bathtub!) or moving the person into & out of a vehicle.

Here are some websites which show you what's on the market, from grab bars to bath lifts, from slings to transfer boards, from trapeze stands to hydraulic lifts:

ucanhealth

1800wheelchair

health-mobility

Medically necessary equipment purchases might be covered by insurance, check with provider. Medical equipment stores can probably help you determine this.
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medicare will pay for a skooter if your doctor writes a prescription. Also, if funds are available, you can modify the shower to be wheelchair accessible. Go to a store that sells grab bars, bed frames with lifts if he can pull himself up.They will be able to tell you if medicare will pay for these. good luck
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You do need help here. Call Community Health Services or the Visiting Nurse Association and ask for a large helper who can LIFT. It may take both of you, but don't give up. He needs your assistance. Be glad that he is happy and mentally stable. Enjoy your life together.....it's later than you think.
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