This is weird to be talking about this - but I need help - so I will just jump right in --
My husband has spinal cerebellar ataxia type II and after a recent fall seems to have more trouble getting around. However, he still wants to do the traveling which we have planned but bathroom visits have become an issue. How do I prepare for this? Depends? Catheters? I need input badly.
My daughter has SCA Type7. as have I. She is completely blind and totally wheelchair bound. We traveled to LA from the UK via Chicago and it was fine. Most airlines have small wheelchairs that fit in the aisles for transportation to the bathroom. On some flights American Airlines even have accessible bathrooms for disabled people. In general airlines are very good.I researched it a lot before we booked and found most airlines to be similar. If you are in a car you are in control just like at home. Hope that this helps.
Sorry it is hard to help. There is a lot you didn't say. I have the same ataxia. We can help. Just tell us more. Is he in a wheelchair?
I have Sporadic Cerebellar Ataxia, not SCA Type 2. I certainly can relate to the bathroom issues, as I have some incontinence problems. Therefore, I always use an incontinence pad (I'm a female, but I suppose you gathered that already, due to my name...,ha!) 24/7, just to error on the safe side. There are male incontinence products out there your husband could use (pads and underwear). My suggestion would be for him to try them before your trip, to see what works the best. Guess I'd try this before a catheter, although I don't know your husbands situation. You may want to talk with his neurologist about the best option for him. Like Lori mentioned, I don't know if your husband is in a wheelchair. If so, as Breddersboy mentioned, most airlines have wheelchairs that fit the aisle on a plane, as well as handicapped accessible restrooms. When I traveled to Europe, handicapped people were transported to the lane separately from others first, and we could board the plane ahead of the crowd. That was a plane parked on the tarmac, rather than at a gate (I don't remember the country, maybe Spain?) As Breddersboy did, research ahead of time, so you don't run into any unexpected surprises. I can also relate to the falling, as this has happened to me several times. Really shakes your confidence, especially if you get hurt! I use a cane when I leave my home to prevent falls. I've never fallen while using my cane. I don't use it when I'm in my home, and this is where I've fallen...,dah, guess I should seriously consider using my cane...,ha! Anyway, if your husband does not use a wheelchair, he may consider using a cane or walker, as he'd have extra stability. My best to you both...,
I have SCA 2 also, last year my wife and I took a cruise to Bermuda. They have accessible cabins which are huge, the bathrooms are very large and handicapped accessible. I rented a scooter in case I needed, when you book a cruise they can help you with that. My ataxia doesn't affect me that much to make travel difficult, but the cruise was excellent. There are rental car companies that rent handicapped accessible vans I believe with wheelchair lifts
P.S.: Please don't feel uncomfortable (weird) asking questions on this site. We understand, and are her to support each other..., ;o)
Jack said:
I have SCA 2 also, last year my wife and I took a cruise to Bermuda. They have accessible cabins which are huge, the bathrooms are very large and handicapped accessible. I rented a scooter in case I needed, when you book a cruise they can help you with that. My ataxia doesn't affect me that much to make travel difficult, but the cruise was excellent. There are rental car companies that rent handicapped accessible vans I believe with wheelchair lifts
Yes, he has been in a wheelchair since a fall two weeks ago when he fractured a rib. Since then he is less mobile than before. To use the bathroom I have to lift him from his recliner (lift chair) to the wheelchair so I can bring him to the bathroom because he seems unable to use a urinal unless he is standing (is this a guy thing, do you think?) He's 225 lbs and by the end of the day my back is killing me.
We plan a car trip to Williamsburg, VA from New York City. We have been there before so I am familiar with the route and the accessibility of Family Restrooms (God bless the person who finally realized the need for them) but I am concerned about possibly not making it to one "in time". I purchased Depends Real Fit for men but nowhjere on the package does it say that they're waterproof. Does the person need to wear rubber pants as well? Does anyone know?
Lori said:
Sorry it is hard to help. There is a lot you didn't say. I have the same ataxia. We can help. Just tell us more. Is he in a wheelchair?
breddersboy said:
My daughter has SCA Type7. as have I. She is completely blind and totally wheelchair bound. We traveled to LA from the UK via Chicago and it was fine. Most airlines have small wheelchairs that fit in the aisles for transportation to the bathroom. On some flights American Airlines even have accessible bathrooms for disabled people. In general airlines are very good.I researched it a lot before we booked and found most airlines to be similar. If you are in a car you are in control just like at home. Hope that this helps.
Air travel is not my favorite - but it's good to know that there are systems in place to help
KatCap21 said:
Jack said:I have SCA 2 also, last year my wife and I took a cruise to Bermuda. They have accessible cabins which are huge, the bathrooms are very large and handicapped accessible. I rented a scooter in case I needed, when you book a cruise they can help you with that. My ataxia doesn't affect me that much to make travel difficult, but the cruise was excellent. There are rental car companies that rent handicapped accessible vans I believe with wheelchair lifts
The travel we plan is by car - but it's nice to know that there may still be another cruise in my future.
rose said:
I have Sporadic Cerebellar Ataxia, not SCA Type 2. I certainly can relate to the bathroom issues, as I have some incontinence problems. Therefore, I always use an incontinence pad (I'm a female, but I suppose you gathered that already, due to my name...,ha!) 24/7, just to error on the safe side. There are male incontinence products out there your husband could use (pads and underwear). My suggestion would be for him to try them before your trip, to see what works the best. Guess I'd try this before a catheter, although I don't know your husbands situation. You may want to talk with his neurologist about the best option for him. Like Lori mentioned, I don't know if your husband is in a wheelchair. If so, as Breddersboy mentioned, most airlines have wheelchairs that fit the aisle on a plane, as well as handicapped accessible restrooms. When I traveled to Europe, handicapped people were transported to the lane separately from others first, and we could board the plane ahead of the crowd. That was a plane parked on the tarmac, rather than at a gate (I don't remember the country, maybe Spain?) As Breddersboy did, research ahead of time, so you don't run into any unexpected surprises. I can also relate to the falling, as this has happened to me several times. Really shakes your confidence, especially if you get hurt! I use a cane when I leave my home to prevent falls. I've never fallen while using my cane. I don't use it when I'm in my home, and this is where I've fallen...,dah, guess I should seriously consider using my cane...,ha! Anyway, if your husband does not use a wheelchair, he may consider using a cane or walker, as he'd have extra stability. My best to you both...,
PLEASE be careful re falling. My husband has had 2 falls - fracturing his vertebrae in 2008 and fracturing a rib two weeks ago. Each fall COST him as far as mobility. In both cases he never recovered to the point where he was before the fall. He was walking without a walker in 2008 - after his spine injury and 6 months in a clam shell brace he had to use a walker all the time. And since he fractured his rib two weeks ago he is in a wheelchair. Falls are to be avoided at all cost!!!! If your cane is keeping you from falling then it should become your very best friend - even in your home.
I have SCA too, I have had far less problems since I have changed to a rollator/walker and I don't have a choice but I will soon go into a wheelchair.
I do not travel at all but because the different modes of transportation have large restrooms and offer assistance I think I will change my mind, this is quite encouraging and I would suggest that you do all of the vacationing now. I too do not know your husbands exact situation. Bathroom use along the way is scary, even crowds but I've learned to enjoy life while it is possible so I do not suggest letting trips to the bathroom discourage you or him from traveling.
Jim
Thanks KapCap21, Yes, I agree, I SHOULD use my cane in my home! I can't figure out why I'm so resistant. I think it's because I'm trying so hard to keep my independence and it's difficult to carry anything/do things with a cane in one hand. It took a fall outside my home a couple years ago (I was diagnosed with ataxia 10 years ago), when I really hurt my back, to start using my cane when I leave home. In my home I've fallen and hairline fractured my pelvis, hit my head on the corner of a wall, bruised my knees and thigh etc (not all at one time). You would think I'd have learned by now! Maybe I'm a gluten for punishment...,ha! Enough about me. To answer your question, Depends Real Fit for men should be waterproof, seeing how there an incontinence product. Is there an 800 # on the package that you could call to inquire? If not, Google the maker and contact them.
I have cerebellar ataxia induced by an autoimmune condition,Im nowhere as disabled as your husband but I worry constantly about the bathroom in the movies or at the theatre/ballet. I try not drink or eat too much on evenings when we go out, Obviously I empty my my bladder at home. I take a wad of toilet paper plus a plastic bag with m e in case an emergency requires that I pee into something immediately. Covered with a coat or a sweater, no one knows. Its like nursing (a baby). N
neta said:
I have cerebellar ataxia induced by an autoimmune condition,Im nowhere as disabled as your husband but I worry constantly about the bathroom in the movies or at the theatre/ballet. I try not drink or eat too much on evenings when we go out, Obviously I empty my my bladder at home. I take a wad of toilet paper plus a plastic bag with m e in case an emergency requires that I pee into something immediately. Covered with a coat or a sweater, no one knows. Its like nursing (a baby). N
KatCap21 said:
neta said:I have cerebellar ataxia induced by an autoimmune condition,Im nowhere as disabled as your husband but I worry constantly about the bathroom in the movies or at the theatre/ballet. I try not drink or eat too much on evenings when we go out, Obviously I empty my my bladder at home. I take a wad of toilet paper plus a plastic bag with m e in case an emergency requires that I pee into something immediately. Covered with a coat or a sweater, no one knows. Its like nursing (a baby). N
My next goal is to get my husband to pee in a sitting position. He has a TOTAL mental block - ALL MEN PEE STANDING UP - We have a handicap tub - I keep telling him I'm going to sit him in there and not let him out until he pees sitting down. LOLOLOLOLOLOLOL (Is there an abbreviation for "Rolling on the floor with laughter because I think I'm so funny?)
Fully intend to keep traveling as long as we can - it's a challenge but worth it if enough pre-travel planning is done to minimize problems. I well remember when my kids were small and we traveled with the ever-present diaper bag. Now we have the ever-present mobility bag!!!!
Jim Bunetta said:
I have SCA too, I have had far less problems since I have changed to a rollator/walker and I don't have a choice but I will soon go into a wheelchair.
I do not travel at all but because the different modes of transportation have large restrooms and offer assistance I think I will change my mind, this is quite encouraging and I would suggest that you do all of the vacationing now. I too do not know your husbands exact situation. Bathroom use along the way is scary, even crowds but I've learned to enjoy life while it is possible so I do not suggest letting trips to the bathroom discourage you or him from traveling.
Jim
Hi katCap21. I bet the 225 pounds is killing you. If he would pee sitting down. It would solve everything. Bribe him. I know what would work. LOL. Really peeing isn't the real problem. Because that could be done anywhere. Make your own family restroom. Wheel him to the stall, or the toilet. I would just tell the people. If they had a problem with it. They could wait out side. Your man has to go to the bathroom. No I do not think people have to wear rubber pants with Depends. Its good that you are traveling. Good luck !
KatCap21 said:
Yes, he has been in a wheelchair since a fall two weeks ago when he fractured a rib. Since then he is less mobile than before. To use the bathroom I have to lift him from his recliner (lift chair) to the wheelchair so I can bring him to the bathroom because he seems unable to use a urinal unless he is standing (is this a guy thing, do you think?) He's 225 lbs and by the end of the day my back is killing
We plan a car trip to Williamsburg, VA from New York City. We have been there before so I am familiar with the route and the accessibility of Family Restrooms (God bless the person who finally realized the need for them) but I am concerned about possibly not making it to one "in time". I purchased Depends Real Fit for men but nowhjere on the package does it say that they're waterproof. Does the person need to wear rubber pants as well? Does anyone know?
Lori said:Sorry it is hard to help. There is a lot you didn't say. I have the same ataxia. We can help. Just tell us more. Is he in a wheelchair?
Hi, I use a moblity scooter to get me out and about. In the home I use a wheelie walker.I have a breakfast tray on the seat which I put my coffee etc on. Before I was spilling coffee all over the carpet. Now it's a lot less stressfull to have a coffee at my computer.
rose said:
Thanks KapCap21, Yes, I agree, I SHOULD use my cane in my home! I can't figure out why I'm so resistant. I think it's because I'm trying so hard to keep my independence and it's difficult to carry anything/do things with a cane in one hand. It took a fall outside my home a couple years ago (I was diagnosed with ataxia 10 years ago), when I really hurt my back, to start using my cane when I leave home. In my home I've fallen and hairline fractured my pelvis, hit my head on the corner of a wall, bruised my knees and thigh etc (not all at one time). You would think I'd have learned by now! Maybe I'm a gluten for punishment...,ha! Enough about me. To answer your question, Depends Real Fit for men should be waterproof, seeing how there an incontinence product. Is there an 800 # on the package that you could call to inquire? If not, Google the maker and contact them.
Hi - In the last five years since having walking issues, I have traveled quite a bit - mainly by plane and also by car. Each trip/circumstance was different.
If you’re going by car and he’s a guy, have you seen those Stadium Buddy things? That specific product is marketed to guys attending stadium events, but I’ve also seen similar products on healthcare sites/magazines.
For sure there’s a way to do it, as you know; it definitely takes more forethought, though. Thanks for posting this.