ELLIE'S BLOG on Living Well with Disability

This is such a wonderful time of the year. This is the time when we visit with our with family and friends. And there may be some that we haven't seen for while.  There may be someone who has had an accident or a progression of a physical disability which was mild when you saw them last.  Or a young child whom you haven't seen before and who has a physical disability such as Cerebral Palsy or Spinal Bifida . Knowing how to react and feeling comfortable and making other people feel comfortable is always an issue. But can be handled well. So at this time hug, hope and love. Reach out to get to know the person.  Let them know of your concern and give an extra hug to them and to their child if that's the case and then move on to a topic of mutual interest that you both can share. If you sense the person wants to talk about the health situation then let them know you're there to listen. But don't push if they don't want to talk about it.

If the event is being held in a restaurant be sure that it's one that is handicapped accessible. Let the people in the restaurant know ahead of time. They  know the best table for a person in a wheelchair. And make sure that the restroom is also handicapped accessible. The rest room should have a raised toilet seat,grab bars and sufficient room to properly accommodate a wheelchair of average size 26/38. And also must have sufficient room for a 40-50 inch turning radius of the chair.  

If the person is able to a walk but is limited in distance.Tell them that also in the restaurant so that they don't have to walk too far to their seat. But then you had also better check the distance from their table to the restroom. And make sure that the restroom is also handicapped accessible.

You should also consider the distance that they might have to walk even before they enter the restaurant.  Where is that the handicap parking?  How is the lighting and the surface of where they would be walking over.  Is the distance they have to walk ok. If it is going to be much longer than they are able to. Then remind them to bring a wheelchair or check out if there is a local place where you could rent a wheelchair for them. If they can walk the distance but walking is very fatiguing for them encourage then to use a wheelchair.  Remember they certainly will enjoy the evening much more if they don't arrive all tired out. And if the person is in a wheelchair or using a walker check out that there are good curb cuts.

I'm reminded of two personal events. Years ago when I was still walking using a cane and my husband's arm for a longer distance's I went to a wedding.  At that time I had not bought myself a wheelchair but when I went to the grocery store or museum's etc. I did borrow a wheelchair because distance was becoming more of a problem. I was not sure of the distance I would have to walk in the hotel where the reception was being held. So I asked to have have a wheelchair available which they did. When I arrived we went straight to the cocktail area which was not very far. Inquiring on the distance to the dining room I was told that it was not very far at all. So I didn't use the wheelchair and preceded to walk with cane and hubby's arm. Well not very far is one thing to a person with no physical problem but it was much too far.  But I didn't give up I stopped three or four times as I was slowing up to a snail's pace and rested.  Of course I couldn't chat with people as everyone else did when they were walking along.  I did finally arrive in the dining room too exhausted to think but I made it.  As I look back now it was so stupid!  I should just have had someone go to get the wheelchair and ignored the people encouraging me to keep going as they did not know what they were talking about!  Somehow using a wheelchair has gotten mixed up in people's minds with the idea that a person is giving up.  Nothing is further from the truth! You give up when you don't listen to your own body and use that wheelchair so you also can participate fully in the event like everyone else.  

The second event that I'm thinking of is when I made a trip to my sister's about 15 years ago. My son drove me there and then after I visited several other family members who live close by my husband was to pick me up.  At this time I was using my wheeled walker with a seat for shorter distance walking in the house. I brought along my manual wheelchair so that I could go a longer distance on highway trips to the bathroom etc. or if I wanted to go out with my family to an event that required distance walking.

At my sister's  when we planned to go out to a restaurant I thought I might need the wheelchair for the distance.  But what we found was my light weight wheelchair wouldn't fit in her trunk. And as I was reassured it wasn't very far  I went with my walker.  My sister had to park a distance from the restaurant and as I walked along my legs again slowed down and then stopped several times.  Luckily my walker was one with a seat so I could just sit and then get up and walk a little further. But when we finally got into the restaurant I again had to sit but this time when I got up I'd just could not take another step so I sat on the seat of my walker and pushed myself with my feet backwards down the aisle to the long distance of where they were sitting to join them.

On the way out of course my sister brought the car close to where the restaurant entrance was.  My sister had seen me walk around the house with my walker so she assumed that I could do it. To her that wasn't a long distance !  But of course that was why I had brought my wheelchair and I assumed she would  know.  When we had all gotten into the car she turned to me and  stated with great concern she could not possibly have imagined that I wouldn't be able to walk that far.

Communication of the exact distance could have prevented the problem as it would have in the prior episode.  Thank goodness my walker had a seat and I was accustomed to periodically sitting and pushing myself backwards when I could not take another step.  When a person has a progressive disease they may not be the same as the last time you saw them. So be sure you check it out, sensitively of course. Obviously a emotion can be high when a person you love loses ability just as it is for the person losing it. 

How far can someone walk ? Will they be required to walk further than that distance.  Can they climb stairs? How many stairs?  Are there any special needs in the bathroom? Do they have a problem standing up and getting out of chairs? These are questions that have to be answered specifically not just a few steps or not that far is not good enough obviously.  And I don't think most of us have a concept of distance in as specific as how many feet.  But we of us who have a physical disability have to do that . And then it is our responsibility to communicate it to others.

I find that using certain facts are helpful to me in planning and  communicating the distance I can walk.  For example my house is 60 feet long inside.  This morning I could walk back and forth three times 180 ft. However I know by afternoon and evening I will gradually lose that and go  back down to 10-30 feet or less by night time. So if I'm planning to go a restaurant I think of my house and explain it to the person.

Now an outside distance like from a parked car to the restaurant you can use the following stats. The average city has from 15 to 20 blocks per mile, which range from a 264 feet to 352 feet for one side of the block. It Is not precise (NYC is 530 ft.per block) but it's within a ballpark of the average city.

When you I have an event in your own home visitability becomes an issue.  The passage of the ADA in 1990 opened up the outside world of public places, restaurants etc.for people with disabilities.

But your private home is your private home.  Most homes have have been built with stairs to enter them.  These stairs can prevent any person who is in a wheelchair or unable to climb the stairs from entering your home unless modifications can be made.  Having a railing and good solid footing on the steps that are well cleared of leaves or snow as well as the walkway to them will make them safer. If a person can climb stairs with assistance it is a good idea to offer them your arm if two railings or their cane is not available. In either case having a person behind them as well as on the porch is most advisable.  If a person is using a walker they can be helped up the steps in the same manner. Sometimes like myself, they may need someone to lift their leg up. If they request this and this is their practice be sure to place their foot squarely on the upper step. You can place your hands on their hips to steady them as the bring their body up. And again have a person up on the porch. And then the walker can be brought up separately.

If a person is in a manual wheelchair they can be brought up in the wheelchair. You bring the wheelchair up backwards.

1. And you need two strong people.

2 one person in the rear who is in control.  He tilts the chair back to its balance point on the large wheels.

3.  The second person is in the front of the chair and firmly grasps non-detachable part of the front frame and lifts the chair up over one step at a time.

4. Both people reposition themselves on the next step and repeat the procedure step by step.

  Going down would be the reverse.You move the rider forward down the steps.

1.  Again the person in the rear is in control. Tilt the chair back to it's balance point on it's rear wheel and slowly roll the chair to the edge of the top step.

2. The second person stands in front on the 3rd step down from the top and grasps the chair frame . He or she lowers the chair one step at a time by letting the rear wheels roll over the stair edge.

3. Moving down a step you then repeat the process till you reach the bottom. Then return the wheelchair to it's upright position.

If the person that is visiting is not excessively heavy two strong young men should not have any problem doing this.  If you've never done this before you can always do a dry run. I remember when I got my wheelchair both of my sons practiced with the empty chair and then felt confident to put me in it to bring me up and down stairs.  I would not attempt this unless there were 2 strong men or women there to do this. 

I remember when I visited my brother's home his two sons who are strapping young men were quite able to do this.  But as my brother said he would have some hesitation and I would have more than a hesitation to ask my husband .

Then next option is a ramp. And if you have an electric wheelchair which is heavier and can not do a wheelie you would have no choice but to use a ramp. There are however portable ramps which can be used. But at a safe 12 to 1 ratio were talking a very long ramp if you are going to do a lot of stairs like in the picture above.

                   I have a small portable ramp that will do 2 2'' steps.  Last thanksgiving I went to my nephew's.  We had a choice of my using my manual or my electric wheelchair as I was not walking at that time.  As their bathroom door was narrow and my electric wheelchair was narrower we chose that chair.  But they had 4 steps of 2 inches with  a long tread to enter their home.  They said not to worry they would find a way to get me in.  And they did as there were 4 strong men available.  As you can see in the picture we used my ramp for the first part. Then I stood with their assistance and support and had my legs lifted back up till I was inside in the chair.

                I go to an historic church built in 1850. They put an an elevator in the church but the parish house has the stairs in the front like on the picture above. So they are using a portable ramp to go up the 3 4 inch steps in the back.  You can see the  length that is required just to go that distance up. The ramp is portable folds up in four sections and is put out when functions are held in the parish hall.

I think the ideal thing would be if you could rent a ramp so people that you know can visit you even if you are in a wheelchair.  I know I would like it personally. Right now I am able to walk and I can climb up steps with proper support. If my legs give out they can be lifted up.  A few years ago that wasn't the case and I was actually excluded from events of my friends and family because of it. That and MS Fatigue is kind of accepted. Maybe we have to change the thinking ?.then a little creativity with more understanding of the need to physically be with people we know and love will come about.

Be sure to call those who couldn't attend the special events this season and let them know your thinking cap is on.

Have a Happy Holiday Season                ellie