Primary progressive MS UPdate in text #1 6/1/08 - let the dificulties be solved easily. See text #3 - Personal - http://maxpages.com/happymspage/The_things_to_expect_in

UPDATE June 1,2008 You may never need a full time wheelchair even in PPMS .
The number of PPMS patients with full time wheelchairing is about 60% eventually .that leaves 40% that will only need a scooter or wheelchair parttime.

UPDATE Sept. 28,2007 Can you ignor that fact you have PPMS?
Probably not.Our lives do lack having a relapse or a remission as do other
MSers have in R/RMS We just slowly develop more disability and have to make
adjustments in mobility and life style.

We usually are successful in this form of MS if we can just put what is happening
aside and concentrate on what we can do.Augment our weak body,with a scooter
or wheelchair. Get extra rest as we usually get massive fatigue daily.
Usually we also get some additional side disease. Our eyes have trouble
with MS as it, MS is without complications.

My doctor tells me of his PPMS patients which are 12 in number ,only two are
walking with any regularity,while the rest of us ,10 are using a wheelchair
or scooter or power chair as our main method of mobility .His average PPMS
patient is over 55 and has been retired early in life as we couldn't manage
working very long after our diagnosis.I personally retired after only two years of
PPMS .I was already using crutches the last two working years.
He also tells me that usually the single ones of his PPMS will need special
or assisted living care in their lives.RET 9/28/07

I was told at the time of my dignosis that what I had would be chronicly progressive.
The term Primary Progressive Multiple Sclerosis (PPMS) had not yet been invented in the 1980s. But my then doctor told me to expect an early need for a wheelchair.

But in my 4 year my walking had already gone from cane to crutches and then
the doctor suggested since I was complining about being over fatigue all the time
maybe I needed a scooter to be my major way of getting places with longer distances.
he still wanted me to keep up some walking with my crutches.He said its good for you to be vertical on your feet a bit each day.

I really loved my first scooter and soon found I was all over our town,and doing much more as fatigue wasn't has great as it had been. It had been at both my wife's and my doctor's insistance I have this scooter.My first scooter was an Amigo which I watch
being made at teh factory in Michigan.The doctor made a good case in his prescription for me with the insurance company as they paid totally for the scooter.
We soon had a hoist by Bruno added to the back of our minivan to make it easier
to get into the car.

You get a real sense of security with a scooter.I have tried power wheelchairs
but never requested one yet .It has been suggested by the doctor I now have since
we moved to Florida.
They just usually will not fit into the smaller cars we will be using with increasing cost of gas.
I have never been shy about going any place on my scooter. Lets fact it
with Primary Progressive MS you soon learn that you will need all the help you can
get with mobility.Your life style will be better and more enjoyable with all
the help you can get.Disney World is just wonderful on a scooter. Reveised 5/8/2008

What PPMS will probably mean to you

This Primary progressive form usually progresses sort of slow for some of us.
It has a very bad reputation,especially with Motor vehicles departments in various
states.I was practically forced in Ohio to get a set of hand controls soon after I
was dignosed.
In Florida where we have lived now 20 years,the restrictions to your Driver's license
are plainly explained on the back of your driver's license
1. corrective lens(in my case I 'm tested by my eye doctor twice a year
in the earlier days the strength of lens got stronger nearly every year.
2. must have automatic transmission
3.Must have power steering
4.a steering grip attached to the steering wheel
5.hand controls,They originally cost me $250 installed but they have been
transfered to every new vehicle I ever owned .They are rugged enought they
never wear out
Besides these basic necisities to drive they have made me retake the
complete driver's test 5 times in 21 years.Every two years my doctor must test my arm and finger strength and report it to the DOE in Florida

The handy side of being PPMS is the insurance never doubts that you need a
new cushion under you on your wheelchair.They also don't doubt that your wheelchair needs repairs or replacement.My braces are replaced every 5 years with out much
in the way of words from the insurance.I could have a brand new power wheelchair right now if I so choose it.Most hardware is quickly approved if you are rated PPMS.

Maybe you didn't realize that men get this form just as often as women
In the other forms of MS such as remission/relapse and Secondary progressive MS
the ratio of women to men is about 3 to 1
So if you are male and had a later in life dignosis ,chances are you have PPMS.

The first year I took the bus to the doctor's office as Akron had a very good
bus service. About at the end of the first year I was still using a cane and
had a lot of trougle walking with it.My doctor saw me coming after I got off
the bus and the first thing he said ,"You are struggling too much and its wearing
you out early in the day just trying to walk.Actually both of your legs are
effected .I recogmend you start using crutches right today.He knew I would
probably have some resistance so he said leave your cane here and the nurse
will get you some crutches to try out for two weeks when I want to see you
again.If you don't think the crutches are not better than the cane then you can
go back to it.
Any way i walked out of his office with a new pair of wooden crutches.Stopped at
the hospital pharmacy and bought a parir of rubber cushions for under my arm pits.
I then boared the bus for home .My wife was surprised with the addition of crutches
but she also recognized I probably needed them.They did straighten out my gait.
Then in the next two weeks I got a call from the doctor and he asked me if I
wanted to continue using teh crutches .I said yes I had used them all the time
since I last left his office.Then he said I don't need to see you today and
make an appointment for 3 months from now.
RET

Most of us with PPMS will eventually need a wheelchair

UPDATE April 8,08 I soon learned life with this form of strangly progressive damage constantly but slowly accumulating we owe it to ourselves to stop worrying about taking the hard way out.We will reach that way to happier days sooner than we think.
I wanted years ago to have my scooter as I express this need in the next paragraph.I knew I need help besides just teh crutches.I wanted to go may places but my legs had different ideas.I also hated the idea of constantly getting overly fatigued with just a block of walking with crutches.
____________________________________________________________________________________
May 17.2008 You will need a good ramp.My first ramp was 16 feet long and dropped
12inches from top to bottom.It was 5 feet wide and with wrought iron black railings.
It had on the stree side a brick planter that would be not only beautiful but something I could manage to take care of from my wheelchair.On the house side I also had a planter
which i planted plants that could get along easily with weak sunlight.The original cost
in 1990 was $600 .It had a thick 1 inch outdoor plywood and treated for termites.The plywood was covered with outdoor carpet.I was always happy with it ,But finally we moved.
Richard

My doctor told me for what seemed like years that I should look upon a wheelchair
or scooter as a friend in our mobility quest. I did any way and greatly appreciated my
first Amigo scooter.I watched it being made in the factory in Michigan.We took it home
in our van .We had traveled a bit that summer.I still had my manual wheelchair
in the back It least it folded and there was still room for the scooter .I have
had two other manual wheelchairs since then.The ultra light weight one I have
now is the best 20 pounds with out the gel cushion.

After we got home for the longest time I never touched the manual wheelchair as I discover the fun
of easy mobility and actually for several miles at once .I tried to test my
scooter about our block to see how far I could reasonably depend upon the batteries.
In this new scooter I could easily get over 10 miles.
I never fought the idea of any mobility devices my doctor told about to me
I really feel sorry about the MSers who hold back and never go any where as they
don't want to be seen in a wheelchair.RET
Most men that get MS and if its later in life say after 35 or 40 we usually get
PPMS RET10/8/07
Update 1/7/2008 The using of a wheelchair or scooter is what will make your life much easier.I have seen PPMS affected persons still forcing their legs still carry them with
the help of crutches .They really put themselves through much misery and unnecessary fatigue.
I was like this once and my neuro doctor keep pushing the Idea I desperately needed
to stop walking except for very short distances and rest easily in my scooter or
wheelchairI finally took his constant advice and stay longer in my scooter .I find I'm
much less tired and can get by with only one smaller nap.
UPDATE April 8,2008 My doctors all would drop over if they ever would see me without my scooter or wheelchair.They both wright notes to say to any mode of travel I need a wheelchair now 100% of the time.It never fails to get me the disabality room at hotels, motels and on my travel orders the travel agency twpes on my agenda and usually the boarding passes.
You get so used to being pampered as a wheelchair user that you become spoiled eventually. RET update April 8,08

Loving life as we have to as do we have a choice?

Living and moving with PPMS.
Clonising or uncontrolled jerking of legs can be embarrising as it will happen even if you are using AFO braces and sitting in your wheelchair.I figure I can't take too much anti spastic meds as they make me too sleep.But hitting a ever so slight bump will set off clonising .I have had it happen at the same time I'm having crying gaggs or uncontrolled laughing gags.Its not the kind of signal I wish to show to the general public ,especially in a dinner theater.But it happens !

I still not ready to give up travel.I have done a lot of travel with either
my wheelchair or scooter. I like the scooter the best but its hard in foreign
lands that don't have our current to recharge the batteries.My arms are still
strong therefore the ultra light weight wheelchair is idea .The plane luggage
handlers and and the bus drives like the low weight as they have to do the
lifting.
Many airlines have a lot of problems with mobility equipment so be ready for
it by protecting yours as best as you can.
Don't try to travel much distance alone.There just too many problems that will
catch up with you.I usually have days when i need a push.I can't do luggage so its porters needed frequently.Have money ready for them.
I use a chair jockey as I call them when in a air terminal.They know their
way around the terminal I have had some really nice wheelchair jockeys.
I try to tip them according to the amount of time they spent with me.I figure
at the rate of $10/hour.Usually they will spend about 20 to 30 minutes to get me
to the gate I need .
Once in Atlanta I had the 2nd VP of AirTrans lines push me as nobody came to do it
and I had to make connections in quick order.He refused any money,but I still
insisted he buy his children some icecream.That was back in 1993.
Wheelchair MS makes us very dependent on others so be nice and speak gentlely with
them as they really are there to help you.It really turns me off when I see an
other person who is a wheelchair user being sour or bitter.I can only imagine
how it will effect those that really are in duty to help us.REt 9/28/07

Eileen Lukeman and Richard Tanner

FL.

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

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Page Updated Wed Jan 8, 2003 8:21pm EST