Wheelchair Users Only Please

My father had a stroke and is now in a wheelchair and is very much like your husband. It's very very tough.

Does your husband have a manual wheelchair? Can you push him in one? That is a way to help prevent mishaps. In fact, my father stubbornly insists on taking his mechanical wheelchair everywhere, but we only let him come to our house in his manual chair. Honestly, we don't have the money for repairs and we don't want to be in the position where we're asking for a new fridge because he damaged ours.

If switching out chairs isn't an option, can you invite people over to your home? There's lots of things that you can do that don't involve a meal. You mention that he loves football - have some people over for a game. While it's still nice out, offer to meet friends at a public playground. In the winter, is there a mall nearby with a playspace? Malls are very wheelchair friendly, in general.

The fact is that people are going to be uncomfortable. People are uncomfortable with differences in general. I would say as long as you're open to talking about what's going on with your husband so you can put people at ease, you're much better off. Finally, hold your head high. Your husband's physical disabilities aren't anything to be ashamed of. It's not like he has bad table manners and just doesn't care.

I wish you the best of luck.

My MIL spent some time in a wheelchair and it was easier to visit her in her home because she could navigate around her own house better (all wood floors, no carpet) than she could at our home. She also had a handicapped accessible bathroom there. We would often share a meal, play cards, or watch a movie or game on TV. Sometimes we would take turns working on a big jigsaw puzzle. Do you have a church that you go to for worship and fellowship? Perhaps that would be a good place to go to meet some people that might enjoy getting to know your family and they could be a good support system for you and your son. Another idea might be to see if there is a MD support group in your area-there are probably other families that might enjoy a visit with another family in the same circumstances or you could visit them (they probably have their homes handicapped accessible, too!

You are not alone! I have Muscular Dystrophy and use a wheelchair full time. I have a family and we do spend time with other families! In fact, we do everything that people do who are not in wheelchairs! Just yesterday we visited some relatives who have a child about the same age as our child; we took the kids swimming at the YMCA! (I did not get in the water this time, but they do have a chair lift, so I may get in next time!) After swimming we went back to their house, where the kids played some more and we had a simple dinner together before we had to drive home.

Having said that, I know that visiting people's homes can be a logistical nightmare! We deal with the issues on a case-by-case basis, depending on the non/accessibility of the home, attitude of the people we want to visit, etc. I have both a powerchair and a manual; I don't have a van, so I usually use my manual chair when I go out. So far, I have not done significant damage to anyone's house while using my chair (knock on wood). I have to wonder.....why does it have to be about the chair/disability? I once damaged someone's house accidentally (knocked a sink off a wall) when I was younger and did not use a wheelchair. My point is, accidents happen! With or without a disability! If a person cannot realize this, maybe it is not the right person to hang out with!

I do not currently have to deal with chronic pain or choking issues; someday in the future I might. I am sorry to hear that your husband has to deal with that. I can see how the choking could make him or others feel self-conscious in public, which could in turn make it more likely to happen..... If you feel uncomfortable eating with people you might try to cultivate relationships with persons who are more open-minded about such things, until you and they can feel more comfortable. Incidentally, I think I read once about a surgery that could possibly help people who aspirate their food, even if it is due to muscle weakness. I'm not sure but if it were me, I would ask my doctor.

I have heard of a support group for people with MD in the Tulsa area. I used to get invitations to their monthly meetings (which I think were on a Monday evening--not sure). I never went because I live over an hour away and we are busy. You can contact MDA to learn more about that. I am sure it is a great group; I would go if I were not so far away.

Some wheelchair friendly activities: museums, aquarium, some botanical gardens, some ballparks (especially new or newly renovated ones), zoos, parks, movie theatres, community centers..... I am sure there are others. If you are unsure about a particular place you can try calling ahead to see what you can learn. There is always some risk because there is no exact definition of accessible and it doesn't mean the same to any two people anyway! We try to be flexible and have a backup plan sometimes!

I do encourage you to keep trying to socialize as much as limitations allow. Of course your husband is worth knowing, and they will be blessed by the opportunity, and so will you! I just wanted you to know you are not alone! I know it is difficult, but keep trying!

Oh, one more thing, as far as the staring goes.....I have been stared at all of my life. I just try to ignore it. I figure it is their problem, not mine. Or that they are staring because they are jealous or think I'm pretty or something.....

My brother was paralyzed in a motorcycle accident and has both an electric and manual wheelchair and goes lots of places with his friends. His favorite is to ballgames and parks to watch the pro's play and also his friends small children play ball. Church is also another place I would suggest and since most church's have halls for lunches and other things you should be able to visit there. I would explain to people what they can expect when they eat with you and let them make the decisions of whether to go out to eat. You may also be making more out of it due to fear which is what I due when I am with my brother. Things I think are embarrassing is not even what bothers others.

I feel so much for your family. I know this is a hard time for you. I have had several friends in wheelchairs and one who also had choking issues. When they went out to eat they always put him facing the wall, or facing a corner. That way if he choked and...um...spewed it only went in a small area and not over other people. You are right, it is better to go when the place is not busy.

So many people do seem to stare if the person is visibly handicapped. If it's someone who looks normal they just glance and are done with it. I think it challenges their mortality when they see someone who is greatly disabled. I can't help but take a moment and thank God for the blessings I have when I am reminded of the hardships others are going through.

Another of my friends has MS and her house just burned down. She is in a much more access. home now, her old one had 3 floors with multiple levels throughout. She was also forced into retirement a bit early due to her limitations. She drives with her fingers straight and her thumbs hooked around the wheel. Since losing her job and then her home, she has just gone downhill. Her family is all she has and they bring the grandkids over and they come from out of town all the time just to see her.

I also have 2 more friends with MS. Both work in the field of social services. Their jobs allow for them to remain working since it is not labor intensive. One of them bought her home and a brand new car when she was dagnosed so when she does lose her job she won't be destitute. The other is saving her money to retire to the Virgin Islands. She has worked hard and when it's time she wants to live life on the beach and in the water's edge.

As for going to others home, I don't think I would. I do not have a handicapped accss. home and I can only imagine how hard it would be for someone to try and visit me. I would much rather go visit where they can be most comfortable, if they get tired they can go lay down if they need to, or just be able to be mobile and not bump into everything.

I would like to think that Tulsa in a good city with lots of support for your family. There should be some MD support groups there that may have people who are in the same situation as you and could really use a new friend too. I understand what it's like to have struggles and feel lonely.

Please know my thoughts are on you and your family.