Wheelchair users Only - Spinal network have you been there? Update text 1 and also text #4 - Personal - http://maxpages.com/happymspage/Wheelchair

April 26,2008 The spinal network news letter is a place you should look if you are new to being a wheelchair user Google it and learn. There is a lot on health and also on travel
There is also wheelchair humor. Richard 4/26/2008 UPDATE

Would you have requested earlier for a wheelchair than when the physician prescribed it?
I did and was at first turned down.I asked the next time i was at my doctor's and he wrote itThat was in 1995,actually I need it much sooner but some doctors look at prescribing a wheelchair as a failure on thei part to do something for you

Really using a scooter or power wheelchair makes many of us the lucky ones

April 1,2008 Mood swings or What am I doing here in this wheelchair?
Since wheelchairs are not the most common mode of getting about we sometimes feel we are strangers ithis world of walkers.Actually we are ,but we soon realize with out our wheels we would be shutins staying at home and hating our existance being such.
The happier wheelers are doing and going places .
The real happy wheelers are traveling and even going to distant locations either here in this country or in foreign ones.
Eventually us needing a scooter or manual wheelchair learn to accept our desperate need to be seated and try to make the most of it.Even with all the cut curbs and ramps
we still feel getting about has its problems .This is to be expected .

We need activies that we can do well and maybe even better than walkers might do .That is why I love being an artist and painting and drawing or working with clay.There are also sports we can do better like pool as we are closer to the table and don't have to bend our bodies like pretzles a sdo the person standing and making difficult shots . They make me laugh some times when I'm play them them in pool.
We need a home that is easy to get about with our wheelchair,a gentle ramp, and no barriers that stop us.
And lastly we also need friends in wheelchairs as they share similar problems we woul drather not discuss with able boded standing people.RET 4/1/08

RECENT FINDINgS of WHEELCHAIR users;
Update ( March 31 ,2008), Too many people with advancing MS are staying seated
at home and not allowing their desires to do be crushed with the mode of wheeling
and travel much about their town.I received much support from any persons when
I had to reinter the using of daily use of a wheelchair.I had letters both e-mail
and snail mail from friends and relatives i have not heard from in a long
time.It was a great boost for me. i will now try to do the same for some one
who has their doubts when I hear about it now.RET
IF you are PPMS then early on you will need a wheelchair or scooter to back you up on longer distances. The average time after dignosis for us with PPMS till we need a full time wheelchair is about 13 to 14 years.There are no two ways about it so my doctor told me early in the game, you will need eventually a wheelchair so if you find a good carpenter have him build you a ramp.I did just before I was wheeling and saved some money.
He promptly wanted to write me a script for either a wheelchair and/or a scooter
I let him do both.Life was much better after I got them.RET

Over half of them don't have a ramp to enter or exit their home.
Only 12.5% live above the poverty level.A very scant 2% have incomes above $35,000
There are a total of 1,700,000 wheelchair users who are considered full time users.
In that total of 1.7million users only 1/5 are even parttime employed to full time and
usually at minium wages.Also out of that total 43% will be admitted to a hospital
in the next 12 months. Wheelchair living isn't a happy time if you are in poverty!!
Only 155,000 have a power chair and another 142,000 have a scooter.
Females out number males 2 to 1 among wheelchair users
The number of wheelchair users doubled between 1980 to 1990 and is growing just as fast since then.
RET May 19,2006 update

New Update March 25,2007
Many of us will have emotional crying for which we have no explanation the same goes for laughing without cause. Actually its my theory that in the place where that
emotion is controled we have an over stimulation.I get the crying secessions
frequently. Even my doctor missed the clue here as he suspected I'm sorryfull of my advancing MS
Update March 31,2008 My Doctor thinks I'm taking being a wheelchair user as my opportunity to travel and has recently said I'm capable of going nearly any where
in the world as long as I incude my scooter or wheelchair.I figure why not enjoy myself and get out and see what there is to see in this world.

This attitude is present no matter if its around the other side of the world or just in our hometown.There are things to see, ,expericnce and do all over .Most of us wheelchair users are never going to get any better so why be a stay at home ? which used to be called being a shutin.
Most modes of travel air, ship train or bus will help you more that you expect to get a good deal with your travels. RET 3/31/08

Remember your friends really know that you will be long term in your chariot.
But they will enjoy your personality if you are not bitter.Should you
still insist on being bitter that you are different from others, then be prepaired
for family and friends to come see you less and actually advoid you.

Also so have the manual chairs at least the light weight ones are much easier to power
yourself.The ones with very light weight about maybe 20 pounds are what everyone who is
a full time use have.The camber tilts the top of the wheel closer to you and helps
to make wheeling easier.
As you eventually build up great muscles in arms and hands your wheeling will
improve and so will your going out and doing things and so will the distance you can tolerate get greater.
Getting back to my aunt with MS;
She wore out wheelchairs with her constant going some place.Her personality was
sparkling and she was always dressed ready to go some where. While I knew she
had MS and was never a time I didn't want to talk with her.This was my
idea as a boy of 12. Later as i got older I still loved being with her at
parties and without her at parties or at dinner after church the conversations
were generally dull and borning .She kept the topics changing so we didn't
dwell on any thing to an excessive point. Her humor was also her charm,even
more that her jewelry.But she would wear fine clothes and jewelry even into the
barn.

I think you get the idea ,be a bore and you will sit many hours by yourself.
Be a spark plug and you will have a lot of company,people who really love you,
and will enjoy your stories and tales.But don't let them elect you to a job!
Just don't keep pining away about your difficulties. They are not probably
going to go away any how.
My doctor and several others have known the right formula to get me over the
rought spots and get to the point of enjoying my life as it really is and not
the wishfull way I might choose. Don't take your disability too serious. Joke with
kids.If you have a power chair or scooter take kids for a ride until the get too
big.They will still remember you after they are too big for you lap.

I have noticed more wheelers on airplanes and also other forms of transportation?
Like wise more are staying in motels and hotels in accessible rooms.
Now days if you want a wheelchair accessible room you should apply early and have the doctor explain why you need a accessible room. Mine just says he has primary
progressive Multiple sclerosis or PPMS.

Try to keep driving ,as you will probably need hand controls but they are worth it.
I had hand controls very early after being dignosed. I had allready begun using crutches
and my physical therapist insisted I need hand controls.I now have had hand controls over 20 years .The state of Florida immediately required them when we moved here .But I had them already.They are a bit hardnosed with us PPMS patients.
Richard

The best way to get comfortable with being a new wheelchair user is to reason
with yourself and tell yourself you are safer in a seated position,Also you will have more mobility and do more things than the old strained walking with crutches or
a rollator.
You have to let go of the initial fear that comes especially the first year ,actually the first two months were the worse for me.Nobody ever becomes compleately satisfied with being a wheeler,I have been told from those that have even been wheelers for over
20 years .
We look at our selves and see a person who is classified by society as SICK or frequently referred to as confined to a wheelchair.That is the worst thought to penitrate our brain.
We aren't sick in the usual sense of the word. We are unable to make our body walk as it should and we are therefore better off using a device that will improve mobility.
If we were sick we might be able to have the right treatments or medication.But with progressive MS there is little in the way of medication we can benifit from
Also sick people are either going to eventually get well or on the other end get much worse and die. That doesn't cover us .The fact is with the right medical attention
from a good general practioner of medicine wheelchair user are living much longer that they did a generation ago.
Richard April 18 ,2008

. Results in secondary damage and problems that will shorten the person's life. MSer in wheelchair are mostly going to loose about 10% of what would have been their lifespan.
.The MSer in a wheelchair make up the third largest group in wheelchairs.
I feel being one of them now,that my chair is a form of body relief,saving my
energy for a few precious things I want to do .
. Most MSer or for that matter most in wheelchairs for any reason do not have proper homes to be completely wheelchair accessible from the start and many never get a good ramp, and doors that are wide enough.Its a matter of costs.

Usually you can convince some charity that you need a ramp.You also need a decent wheelchair,not one that is available out of a loan closet.Get on ethat really
fits you.Get a light weight one.Remember most of us are on a energy curve
that never gets very high in the graf line and soon dives to near 0 all too soon
in the day. The good fitting wheelchair is a blessing to you!!You deserve the
best if you can any way swing it.

Add on power to your wheelchair.Although I haven't seen it except on their
web site www.Zapworld.com It looks interesting becaue of the ease of application and also the price of $500. It reminds me of my old Wizzer motor I added to my bike in
the 1950s.Which then cost $100.
This device the zap power assist to your wheelchair will allow you to transport your
wheelchair with out a clumbsy huge van that costs like crazy.I'm going to seek it out and check its advantages and disavantages soon.If its all I think it to be ,life in a wheelchair suddenly got a lot easier.
Even a break down scooter takes up space and requires a minivan.I'm tired of
minvans I'm on my 4th with the Bruno lift in the rear.I would like a smaller and less
expensive car.
RET email at RET1000@AOL.com

New information from wheelchair user who send me e-mail Sept.1,2002 Update;
Many have dreded the day they would need a wheelchair full time.But my e-mail has shown
of those who have acclamated themselves to using one after a year they have some perks
they really didn't expect;
1.They have more energy than they expected as compaired with the days they used a walker
or crutches and braces .The legs don't have to work as hard any more.here is where real
fatigue of MS mounts up too much use of our legs .They are the first to go weak
2.many men due to the fact of saving their strength have more to offer their spouse
when its bed time.I too have discovered the same as If I'm in the scooter or wheelchair
all day I can get it hard and keep it that way a while.
3.with stronger arms and propelling your wheelchair your physical health will
be better.Your heart gets its exercise,and your cholestrol will be lower as was mine
recently.Your triglicerates will also drop and your good cholestrol will increase.
4.You many not need as many naps.And pains will probably be lass as your legsmuscles
will not be overdoing their weak power.They tell the post polio people the same thing.
5.your facial expression will reflect you rested look.Some have even been told with
leg rest they started to look younger.
6.If you actively do wheeling then your butt will get shifted enough as to not
develope sores.
7.Looking better from not expending so much energy just getting about your attitude will
sharpen and your brain will work better and faster.Your creativity will
improve.Get teh best wheelchair ,preferred a ultra lightweight style ,and the quick reliesewheels will allow you the ease of getting it into a car.
8. In a survey of MSer who have gone into a wheelchair I conducted a few years ago.
most have found hew vigor in their life after becoming properly orientated to the life
style of complete wheelchair living. It wasn't as bad as they originally expected.
But most also reported they needed a year to get into the swing of wheeling instead of
walking.
9.About the sharpness of the brain and creativity.My best paintings and writings have
occured when I had been pampering my self by staying in the wheelchair or scooter all
day in fact for several days.Actually my depression isn't as deep when I'm wheelchaired.
10;When you are in a public place you really get pampered usually,it doesn't always
work but I have found most of the time it is true.
My wife doesn't like it but I seem to flirt easier with other women when I'm seated in
my scooter or wheelchair
11.My eyes are easily blurred if I'm struggling to walk,it doesn't happen when I'm seated
12.I arrive rested or better than if I had crutched it out all day If I travel
in a wheelchair via the airlines.Let them push you through the airports.My legs haven't
been able to take it for the last21 years.
There are some disavantages to wheelchair lifestyles but that is for another
article.

I would enjoy receiving your comments as to your thoughts on this subject.

send to RET1000@aol.com
Richard

We strain to keep from using a wheelchair because of attitudes held all our lives.
They after a few months of using one we soon find they liberate us.I'm going tomorrow to
see a home which was designed and built for a person in a wheelchair from the start.
I hate the expression confined to a wheelchair .I never use it .One is a user of a wheelchair usually by disease and choice.
Yes I said choice ,with out fancy equipment such as modern wheelchair and all their
accessaries most of us would have glum life styles in the older models which were the days of the old and unwealdy wheelchair which were pre war 2.
There has been a lot of evolution in them and many are enjoying themselves even in spite of their disability and its growing progression.
lets face it few of us are still walking after 20 yrs of MS.After 10 to 15 yrs most of us are in secondary progressive MS.By 20 + yrs few can walk very far if at all.
RET 9-4,2002

My new doctor took one look at my attemts to walk with my crutches and braces and said ,
"You love being a marter and suffering and shaking" I was stunned and then she want on to say,"I chalenge you to stay in your manual wheelchair for 90% of your awaking day.And also 95% of your body movement.then she went on to say too often we see exactully what you are doing trying to be as normal as possible.Your are not normal .you have had MS now
22years and it has made you severely disabled and very easily fatigued.
The last time you were in here I signed a prescription for a very ultralight weight wheelchair.why aren't you enjoying it?
She made me think.Yes I have had MS long enough to know how to save energy and remain in control of my body longer in the day .I could get by with one nap instead of two or three a day.
I took her up on the one week challenge of remaining in my wheelchair.It is one of the best built,very light weight.why did I not use it more.Its social pressure.
But I then realized everyone already knows I'm very disabled.why not be comfortable and
have less fatigue and let my brain function better.
Mental fatigue is very definately a part of MS in the SPMS phase.I learned in one week my mental fatigue was almost nil.I did more creative painting,wrote more on the computer.
Had a better appitite as I had been really out and wheeling about the community.I rallyed
in body with vigor I hadn't know in a long time .The poor weak legs are really my worse
part of my MS.Fortunately my arms have remained unscathed and strong.
One of the side effects of being in my wheelchair for a one week challenge was my sexual
appitite increased and this pleased my wife.
It really wasn't as hard a life for one week as I thought it would be as our house is mostly wheelchair accessible.
Then came Sunday.What will our church friends say if they remembered seeing me with crutches and braces now for months and months,and now suddenly in a wheelchair they will think I have a relapse.I was right several asked was everything OK or had I any new troubles.this is the way the world interpets a person suddenly in a wheelchair.But many had seen me out at the mall in either my chair or scooter I haven't walked a mall in over 10 years.
But as some church friends with great observation powers were able to see I was more rested and doing well in the chair.In two days my one week challenge was up.What would
I do now go back to mostly crutches and braces? I told myself I did need more time in my wonderful Quickie ultralight weight.So now I do more time and find even thought I'm only using it 60 % of the day and for the longer distances the benefits of rest can be enjoyable and I now have no fear of ending up being a full time user of this or othe rwheelchairs in the future.I will actually get more done.
Why are we so scared of what the future will bring?RET

March 30.2001 update on wheelchair life.
I don't want to forget you people just because I'm not in my wheelchair 100% of the time now. I have been more successful at getting back on my legs even with my crutches ,or wheeled walker and assisted also by my AFOs.
But I have been doing reasearch with living in a wheelchair.
My type of research is just ta

Getting properly fitted for your Wheelchair

Sept 15,2007 Getting fitted right for your wheelchair is
very important as you will spend many hours a day and many days in it.
Nothing so bad as a chair that you don't fit into and your butt is sore

1.sit down games,cards, board games and a writing a friend either on paper or by e-mail
2. Take a ride in the morning before it gets too hot.I then go swimming we in my community
can have as many as three wheelchair users in our pool at one time ,early.
3.On days when I don't want to do swimming as it tires me fast.I go roll bocce ball
in the shade.
4. Take a ride along the river trail in your chair.Many towns have such a facility.
You meet such interesting people.
5.Do a mall.They are air conditioned when its too hot to do any thing outside.But
watch those stores with narrow aises as they are real wheelchair traps.
6.I find going to church very relaxing,sometime just to look at our very story telling
stained glass windows.
7.Read as long as you can.Usually using my eyes can somedays be as tiring as
trying to walk.
8.There is an long list of places to examine on the internet related to wheelchair living
9.Get into crafts or painting Its one of the things that totally relaxes me.
10.Learn to never become impatient.You will never probably be any better.
11.Take enough with you in the chair to amuse yourself for hours.books,cell
phone.manicure equipment.a bit of candy,a shady hat to cover your head.Extra water.
and I hate to say it several Depends if you use them.I have missed getting to a rest
room too often .
12.Ball games either ootball,baseball or even basket ball are always amuseing for me.
The wheelchair seating in most of the stadiums is now days some of the best seats .
they frequently are in the shade. The tickets are available when the rest of the stadium
is sold out.
13.Food courts in malls are a favorite of mine ,where I just people watch.and sip
a drink.
14.There are some great movies to amuse you but the stadium seating is poor for
wheelchair users as you spaces are usually too close to the screen.
15.Take up a small garden in tubs .The power to grow is a wonder of nature I neve tire
of seeing.
16.Visit a freind who may have also accesibility in their home.If not make a suggestion
you meet somewhere like a resturant to see each other.
17.Attend you support groups,If like some you tire of all the bitching find another
person also turned offand suggest going somewhere to enjoy a drink.
18.Naps are alwya in order with us that tire out easily.
19.Farmers markets are wonder places to see and do,sample and bay a little.
20.Enjoy the nature of a small local park We have one that has a concrete sidewalk
about a interesting lake The path is only 1/4 mile but ther is much to see in that
short span of 1/4 mile.The hill street coming down to the lake with a fountain in it
is always our site where we conduct the local trials for the local soap box derby.
The one winner will make the big one in Akron.Which I used to love when we lived
there.
21.Mybe you ahve some of your own and I would love to hear them.Please e-mail me
RET1000@aol.com RET

June 4,2001 Is your wheelchair expressive of you?Yes in ways it is and others not.
The wheelchairs coming in colors is ment to express you .The bag on the back is also
I have three bags,everyone has a purpose.I want everything to be handy.I want my cell
phone there.I want privacy of my bags, because in one I keep an extra Depend.I don't
mind my water bottle showing but I don't want my method of catching the exit of water
being caught by Depends to be like the adds on TV.I'm not a bill board.
Your wheelchair is a convenience to get about but he doesn't have to be a "tank"
as is the term of old heavy weight chairs which may be easy to sit in but hard to move
as their weight is more that should have been designed into a "working wheelchair"
That term working wheelchair isn't mine but the construct phrase of a person who has
used a wheelchair for many years ,and is an accomplished writer.
The working wheelchair is one you can manage yourself,go places and still feel
comfortable using.Not a clunker.If it's not a clunker then it has some style to it.
That is why they started using colors.RET

May 15,2001 Met a new friend. He had just been jolted with the fact he would have
to give up walking and start a rolling life.He was sad and depressed.For starters I
don't blame him.
It all takes some getting used to being in a wheelchair full time.I have been through
this shock wave three times.In the last 7 years I have gone into using a wheelchair
full time.the first time in 1995 it lasted for almost 2 years,most recently I had 6 to 8 months bouts where you start getting the feeling you wouldn't come out of it.
But my doctor says the next one will be perminent as the plaques are piling up in the
spine.
But getting back to my new friend.He now faces much just geting used to this life
style.

May 10,2001

Getting the right ramp. Ramps are necessitys for anyone who also uses a
wheeled walker.Recently a family moved out of our gated village because the husband
didn't want to install a ramp.He looked at mine which I'm very proud of because it
looks so much a part of the home.
I asked him why he didn't want to build a ramp on their home.Could it be the cost?
No they were expecting to enter a assisted living center as she is only getting worse
and will need to get a wheelchair in place of her wheeled walker.But why move?
She can't handle the household chores.He was doing nearly all of them.Buthow
much will assisted living cost you both? I never got a clear and honest answer.
The reason he didn't want the ramp was they devaluate homes.They are harder to sell

If you need a ramp you don't worry about will it sell some day.You get someone to
build it.If it's designed right it will look natural and the future sale of the
property will not be in jeparty.

FEB.13,2001 We have received many inquiries about entry into
wheelchair living. Both Eileen and myself have addressed this problem.
It is something you really never get used to.One woman who has been
using a wheelchair over 26 years told me you just try to do what you can,
try to forget the days when you walked but everyone about me is a
reminder of my former days.The person sitting between two wheels is always
a person who must get used to others gapping at you.I have talked to
wheelchair user from all reasons or diseases.There is a great story
with each. Naturally they loosen up and talk to one of their own who
also uses a wheelchair.A sort of fraternity . In general you will be
more comfortable with another person who is sitting between two wheels.
Your family will not even think of you as the same person . I have
found this out at reunions.

pdate;1-27-2001----- Wheelchairing in a foreign country?
We just got back from a cruise in the Caribbean, the ship was
wonderfully accessible. Th wheelchair room I had was huge and
easy to navigate in. The ship's employees were most helpful
helping me on and off the ship. But once off your troubles
begin. In island nations of the Caribbean accessible sidewalks
are almost not there.I even had trouble buuing Depends.But the
ship's infirmery did comeup with some thick ones which I needed
since I have recently lost all control.

There were many interesting people I talked to who were also
wheelchair users. But only two were MSers.Our fellow wheelchair
users still have the same problems getting about and especially
on the islands.

Update 12-26-2000--- Your attitude to being in a wheelchair
Few would pick a wheelchair just for the hell of it.
But if you are directed by your doctor or you feel it is
time to stop struggling at your walking as it has gotten
very poor as mine did recently to think seriously about
using a wheelchair. Too often I have seen fellow MSer
say they would fight the wheelchair off as long as possible.

Let me say to them, It isn't that bad . I now feel
rested. Not as easily fatigued.If my legs were to get better
I wouldn't mind going back to my crutches and AFOs but
I was too exausted too easily and a danger to breaking bones
as I fell easily.
Your attitude is or should be one of pride in yourself
no matter what assistive devices you need. I know now
I'm on what would be called the "sunny side of wheelchair
use" That is I'm still enjoying strong arms and also enjoy
getting out every day and doing my "wheeling" which is
a roll through the community for about a hour and meeting
people along the way. It is about a mile roll every day.
Being Florida it is a mild winter and easy to get out
every day.
That phrase'sunny side of wheelchair use" was one my
doctor used to describe me. "With your strong arms you
could propell yourself for almost all day with just a small
amount o

Hobbies for us who don't walk much any more UPDATE 5/7/2008

UPDATE April 14 ,2008 Hobbies to lake our lives more exciting.
Life in a rolling chair is for many of us a neccisity and while we are at it we need something to keep our mind and soul involved and happy.The physical exercise can also be a plus factor with these hobby suggestions.
1. I enjoy growing and attending my many African Violets.Hardly a visiting person male or female fails to notice them as my studio is the first room when you enter out home.All my plants ar on plant stands which are 2 and a half feet to 3 feet at the most.I have various interesting pots too as I don't mind spending the money I don't spend on golf or boating since I don't do these expensive hobbies.Boating also I haven't been able to boats
get into a small boat you have to get down into for the last 10 years.
Focus on something other than your wheelchair.There are dozens of things you can do
that don't depend on walking.But get out of the house regularly!!!!Richard 5/7/2008

2. Try pool or billards as you in a wheelchair are in a better position to play than the standing person.

3.Paint in oils , acrilics or water colors are easy for us who sit all the time.
In fact I took up art school after I got my first scooter.I had the time to do it and I soon found I was doing better than I expected .My painting mate in art school was also a scooter user and I took her home as she wasn't driving .
4.Travel if you have the money is a hobby which will give you a different place for your photos and your paintings.You might be surprised at the ones you will sell on the spot.
But travel can still be successful within a much smaller area say like your city or county.You will still never run out of subjects in a local frame for taking pictures or painting on site. Richard 4/14/2008

a must book for wheelchair users,full time users

Everytime I go into a mall I continue to see someone In the wrong sized
wheelchair. I saw one just today a poor woman ,not in a mall chair but one that
looked brand new.I remember seeing the same at my last support group.I sat next to a
woman in a fairly new wheelchair.She didn't fit into it either.The pitty was she will
probably in it the rest of her life.Unless they get her one that fits.
Now tell me the truth! after you are settled into a wheelchair that fits you with the best cushion also available,don't you feel more relaxed? Legs no long very hard to move and slow too.
I have never been to Disney World without my scooter since I was dignosed.
I get a floating feeling that lasts all day long.My body then is never in a struggle to move. I can go faster than over 95 % of the people there in Disney.I stranglely enjoyed
every trip to DisneyWorld and other Orlando attractions just floating along.We are not confined to a wheelchair we are liberated and move with great speed and direction with certainity. Richard revised in May 8,2008

It just all goes for a miserable life. Wheelchair living isn't a picnic
but you might as well live in your chair as comfortable as possible.I also see
people in wheelchair ,whom I know aren't just tempory in those chairs with
bad or no gel cushions.My doctor gave me a lecture about the right gel
cushion is more important than the chair itself.

UPDATE:March 25,2007 The right wheelchair for you?
My man who measured me for my first wheelchair said I need to know how
active you will be.It will determine even the style of Cushion,which no money should
be spared when it comes to cushions.Actually your bottoms health depends upon it.
If you go on Spinwheels on the internet ,youwill discover that the options for a
wheelchair will require a lot of personal thoght as "Will be doing a lot of wheeling?
going on busses ,trains and airplanes.Then it needs to be light weight.
Many of my wheelchair using friends like the rigid frame over the folding.

In the beginning life in either in your wheelchair or scooter will depress you.But once you realize there is a necesity of reinventing your self and deciding what now
can I best do in a seated position.
Remember you will still get fatigued even in a scooter or powerchair.That is the sad mystery about MS.
.

The hotels and restaurants we were scheduled to stop at were all called in advance
by our tour guide to set up a table minus a chair for my space to park my wheelchair.
The hotels always booked me into awheelchair accessivle room.I was so happy on both trips I imagined I ws royality.Then I met at Figi Islands a woman who had used a
wheelchair much longer than myself and we hit it up nicely together .I think it
even made my wife a bit jelious.The woman gave me a lot of rree tips on the wheelchair
life.She was actually traveling almost completely around the world by herself.She was very self reliant

But for my choice I would pick the ultra light weight models with the quick removal
big wheels.While they are delacate,they take little strength to operate and are a real
joy to use from a long term standpoint.I see a lot of younger adults using them.It will
cost you as your insurance probably wants you to have a "Tank" so they will not have
to buy you a new one too often.but remember they don't give a damn how good your social
life style is or how easy it is to propell,they are just bottom line minded.

The Ultra light will usually fit into most cars back seat once the wheels are quickly removed and many users are able to stow their own and still maintain a driving of their
own car with the aid of hand controls.
I have seen even small cars as is typically in foreign countries light weight
wheelchairs in the back seat.They are also great to take in airlines with you.
Remember you want to go places and live a grand life style in your chair not suffer
even a worse life style because you are needing a wheelchair.Be happy with your equipment.
RET

UPDATE on my recent trip to Northern Europe and wheelchair accessibility.
Aug.26,2001 Trip to Sweden,Finland,Norway,Denmark and Estonia.
The degree of wheelchair accessibility from one country to the next can't be counted
upon as being cosistent. If you need a wheelchair full time the trip would be almost
imposible.The trip was mainly on the large ship where accessibility is the best if you
have the disabled room.They were easy to get and nice and large.

One post polio person in a wheelchair full time only left the ship twice in 7 countries.
The streets in most European countries are narrow,with cobble stones which can start
your legs to clonsing or shaking out of control It is difficult even if you have a pusher.
One person in a power chair went further.But the museums in all cases were not accessible. While I did use a wheelchair in several museums,there were hangups and things you had to skip.You are better off to stay in the USA if you are full time wheelchair
user.
But if you like me depend upon crutches and braces most of the time then the trip was
really a ball and I did it all.The palaces in various countries which are open to the
public are loaded with steps.Some elevators are being installed.Denmark and Sweden are the most accessible as they also have large numbers of MS and other disabled people.
The cruise ships all have 110 volt current so charging the batteries for the day was no problem.RET

WHEELCHAIR CARE: Your wheelchair regardless of make,needs maintaince.Some things
need weekly attention while others only seasonal or yearly attention.
You will have to probably do the dusting and keeping it look nice.Many of the other
things will possibably be done by someone else.
Remember when you go out in your wheelchair or scooter.It is a part of you.You may
have spent a lot of time gusseing up to look nice,but if your scooter or wheelchair
looks terrible it reflects on you.
Weekly Chores:Dusting and cleaning.A sponge or wet rag will do to go over the wheels
and spokes if you have them.The other type of wheels minus the spokes are easier to clean.
The front wheels also need some cleaning.the frame and the seat upholstery.A common
dusting spray creaner on a rag will do OK.
The bearings need some lubrication,maybe just a little .Too much will just attract dust.
Probably the tires need air regularly.The air seems to just pass through the walls of
the tires themselves.Mine have no leaks you could fix but it does leek out.
Then seasonally or yearly a expert needs to fine tune the wheelchair unless you want
to play mechanic.I don't choose to do such.

"How To Live Longer with a Disability"
written jointly by Elle F. Becker, and
Robert Mauro. Elle is a paraplegic from an
accident. She is a certified counselor.
She counsels individuals and familys.
She has also written " How To live with
a Spinal Cord Injury" , "Female Sexuality
and Love" and Where to Find It and How to
Keep It".
Robert is a polio person from 1951, on a
respirator, has a degree in socology, has
sols about 200 plays, poems articles, short
stories and two books . He edited "People
Net. wrote " Computer Literacy By and for
Disabled Persons . And Finding Love and
Intimacy.
The general topics in the book are Making
Your life Easier, Medical considerations,
Benifit Programs, Physical, Social and
Psychological Aspects , and personal
experiences. The Paper back edition Is
$11.50 from Accent Reprints call them at
1-800-787-8444 during Central Time
business hours to order.
They discuss some real issues and gut
level stuff. If you haven't read this one

do so.
Since none of us ever get out of MS,I figure you
might as well be comfortable in this disease.This is why
I have unbashing enjoyed a scooter since first being
diagnosed.I have gone through 5 of them in 20 years.
All were or are Amigos .I didn't actually wear them all
out, just managed to trade up on some of them. If you
keep your eyes open to advertizing you can pick up
used scooter cheap from estates .I once bought the
little "yellow Amigo" the one that is a front wheel drive
for $300. It even had a mechanical raising seat. I used it for
a year and found the opertunity to sell it for $500.
Recently I had the a E&J light power chair.Bought it out of an estate.
. I used it for only 5 months and found Original price I payed $2000
a buyer for it so I sold it for $2500. I almost at one time
was considering being a used wheelchair sales outlet.
Revised 4-9-2000 RET.

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

Visitors: 17687

Page Updated Thu Jun 26, 2008 8:21am EDT