Last week my husband and I decided to go to a couple of new garden centers.  We have several close to us that we have used for a lot of our gardening needs.  But it's fun to go to a new place as they usually have some different flowers or other garden paraphernalia.  I guess we've been spoiled because the local garden centers have the paths that are easy for me to use in my wheelchair.

As heat is a problem for people like me with MS we started early before it heated up. The first garden center we went to was recommended by a friend who works there part time.  Pulling in we realized it was heavily graveled with large stones. We looked at each other knowing this could be a potential mobility problem for me.  But as we are not people who give up without  effort we took out my electric wheelchair and yes the large stone gravel was limiting.

However, the people there were very nice and brought me a chair to sit on as I had to use my cane to get around where the electric wheelchair couldn't go. As my walking distance is quite limited there were many areas that I could not get to. But we did find several plants we wanted and bought them. By the time we were finished I was beat but we still had one other place we had planned to go to. So I rested while my husband drove us there.

The second place was also all covered with gravel. Knowing I would be limited in my electric wheelchair I figured I'd try using my large wheel wheeled walker with the seat. I knew my husband or I could lift it if I got stuck and I could sit when I needed to immediately on the spot. It was easier to get around and I tried to find shady spots between my short distances that I could walk. However it was later in the morning and hotter and suddenly I could no longer walk.  So after resting I found I could take a few steps and added my sideways- backwards walk which brought me further. Normally my next step would be to sit on the seat of my walker and push myself backward. But due to the gravel that was a no go. However with my husbands help and time we made it back to the cashier with our purchases and then to the van.

As we left I looked back with longing as I did with the former garden center. Longing for the sites with flowers, bushes and trees that I could not get to. But I checked out what we had purchased with great satisfaction. They were plants that should fill spots that needed them perfectly.

But as I was planting them with my husband's help in some cases I felt such a sense of sadness. There were some areas I wanted to put some more perennials in. And I have to admit I was really tired and angry when I thought of all that impossible gravel impeding my shopping adventure for my garden.

And as I continued to ruminate on that awful gravel I pictured myself going places where they had gravel in the following wheelchair.

                                                      This is called the TANKCHAIR. This chair was created and built by Brad Soden for his wife who broke her back in an accident. Confined to a wheelchair her life was changed dramatically. She and her husband and their 5 children loved to camp. An incident on a camping trip compelled her husband to create a chair for her. For more information on the TANKCHAIR and why and how it was built go to  http://www.tankchair.com/ 

In this crazy wheelchair gravel would never be a problem for me. I could also go hiking on trails that are inaccessible to me now and just ride across open fields or along the beach. I wonder if I could even climb up sand dunes, hill's or even mountains ?  

My electric wheelchair is meant for going over floors, sidewalks, grass or very fine gravel.  There are standard electric wheelchairs or scooters with larger wheels that could go over larger gravel and some limited open terrain but they are expensive and not in my budget.

But this wheelchair is the max. It's certainly not in my budget. But what a wheelchair !!

                                                                               Look at that expression of utter joy on Pam Soden's face.

What a husband!

What full fun day's of camping this young family will have!

After having fun picturing myself in this TANKCHAIR  going all kinds of places unhindered suddenly my anger at the gravel diminished.           

I glanced over to the chaise area (my special shady nook) on my deck to the plants I had just added there .                                                     The realization that I had almost forgotten the pleasure that I felt from what I did see and had purchased hit me. There's nothing wrong with wanting things to be better. But again the important lesson of appreciating and getting pleasure from what can be can never be forgotten. 

To find current information of new ideas to increase mobility by adapting your wheelchair or a innovative new products go to the Wheelchair Diffusion Blog  http://www.usatechguide.org/blog/category/wheelchair-weird/

Live well and don't obsess on what you can't do.

                                               ellie

Last year my sons put in a raised salad bed.  And then I asked them to write up a detailed description with picture's here on my blog so I could share it as it was just so great.  It can be found on my blog  of 7/29/2009 "How to Make A Raised Salad Bed".

last summer I was able to able to plant, grow and then pick my salad greens most days by myself.  It was so successful that we did not buy one salad green till October. And at the end of the summer we composted the bed to put it to sleep for the winter.

Over the winter we just watched to make sure the snow was not piling up too high on the top of the bed. Periodically we just cleared off the top of it a bit.

This spring (which came early this year) we assessed its condition and it was good.  However my sons decided they didn't want to risk any chance on long-term unsteadiness as it was a keeper. 

So they raised each end, poured in cement for it to rest on to give it utmost security.

Then they prepared the bed for planting our salad greens this year.

This is the fantastic result. 24 different wonderful greens in a patchwork quilt pattern ready to eat in Mid-May. Who needs flowers for beauty! (Oh we have flowers too.) And now with the new ramp they built for me to go down off the bridge "I'm independent no matter how my legs are every day.           Bon Appetite         ellie

The Paralympics Winter Games  officially opened March 12 in Vancouver Canada with a thrilling opening ceremony.

The Torch was lit then nearly 5000 performers filled the stage .The theme of "one inspires many" was reinforced by all the dancers, singers, acrobats, athletes, and musicians to celebrate the compelling achievements of 506 athletes from 44 countries around the world.

This event was broadcasted live on www.  ParalympicSport.TV, as well as big screen televisions outdoors at Vancouver's live City Celebration Site.

You can watch the opening events as well as the ongoing paralympic sport events on ParalympicSport.TV.

There are live as well as rebroadcast events in Alpine Skiing, Biathlon,Cross-Country Skiing, Ice Sledge Hockey and Wheelchair Curling. Both men and women's events.

    WHEELCHAIR    CURLING              SLEDGE HOCKEY             ALPINE SKIING

 CROSS COUNTRY SKIING                 BIATHOLON                            ALPINE SKIING

 THESE ARE MUST WATCH EVENTS!   BE PREPARED TO BE awed,stimulated,inspired then just involved!!

                                                          ellie

On my last blog which was under MS I talked about being in an MS relapse and what I was experiencing physically as well as emotionally. Well I'm now out of it. And it was short relapse!  Which pleases me no end (my new medicine is working).

I blog under two categories MS and then Disability.  I hope that many of you go to both of them which you can do by just using Ellie. I have MS separately because I have MS and I think it's my personal experience and concerns that I want to share and talk about. I also blog about Disability. I do this because I have a personal concern for all people with disabilities which comes in part as I am a physical therapist who worked with people with disabilities for many years.  And now with MS I am also a person who has disabilities as do other people who have MS.

If you didn't read my last blog which was under MS take a look  I talked about what was happening when I had a relapse. I started with my cognitive loss and fatigue then moved on to the physical loss that I experienced over a period of 2 weeks. During this time issues of ways to compensate for cognitive loss,fatigue and physical loss became important to me. I have become a pro at compensating for fatigue. You rest more!  And I also take a Provigil and drink too much caffeine.  And this is when I usually start meditating again.

The physical part is relatively easy also as I have all of the assistive devices at my disposal. Wheelchair,walker, cane etc..  And I have learned over the years to use them when I need them. No heroics here!  I've tried that!!

So when I see people limping or lurching or even not going out because they can't walk that far it makes me just want to scream!  Being a physical therapist I know that using your body improperly when walking can lead to secondary problems. And letting yourself lose out on life by being stuck in your home because you won't or can't afford the right assistive device is wrong. To be honest I also have had times that I did not want to admit that I needed an assistive device so I do understand the emotional aspect.

But it is really so detrimental to your physical body and your life itself. Why is it that nobody talks about respecting your body and what it's needs are for the physical task you going to perform?

When I was working as a physical therapist whenever the Olympics were on I would be reminded of this.  And tell my patients how even though they weren't athletes their exercise and walking program and what they were doing was an equivalent.  And when you see these Olympics Stars using the best equipment possible so they can use their body to the greatest advantage performing the skilled event you have to question why can't it be the same for a person who has a disability! Why wouldn't it be just expected that they would have and be using the right assistant device so they too can use their body in the best way possible , even if it's just walking across the room !

Do we have our priorities upside down here?  Would we tell these Olympians who choose to use more advanced equipment that would help their bodies perform at a higher level that their giving up or cheating.  No way! And closer to home when I played tennis I chose the best racquet for myself as did most other people I knew.

But do we give the disabled who choose to use an assistive device so they're not lurching or limping or exhausting themselves and preventing future secondary problems the same respect for their judgment?  Or do we think that they must be giving up or cheating by not trying harder? It's odd that we even think they must be getting old if their past a certain age. You don't use an assistive device like a cane because your old. Even if a person is 90 they would use a cane or other assistive device for a physical reason. 

So I propose that we all make an effort to salute and support these people who are respecting their bodies and trying to live their life to the fullest!  And the hell with what other people think. Let's help them get over the fact that it's a negative. Because it is not! It's a positive act!!!

If you have a condition that effects your walking ability that's life. And your life will be much easier when you admit to yourself that that's the way it is. Then you can move on and do what you can to assist yourself to living your life to the fullest. You go get the best assistive device possible to compensate for what your body is no longer capable of doing.  And in the process you will be preventing secondary problems that could be occurring by using your body improperly. You will be respecting your body!  

We didn't do that with polio patients and they now have secondary effects that if we had a different policy things might be different for them now.  But it doesn't have to happen again.  We have the knowledge and also better equipment if we can afford it and the outside world is more available to us thanks to the ADA.

So let's get out there people proudly and feisty with our  walkers, canes,crutches and wheelchairs as appropriate and live!

See you out there!   Ellie

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