When I was told I could longer drive due to the short term paralysys / paraparesis in my legs, fine I bought a mobility scooter, now that the paralsys is effecting my arms and hands as well, there goes my independence, my beloved wife has to take me everywhere.
I can no longer use my scooter as it presently is, as I would be unable to control it if an episode occured.

Also I have a mobile / cell phone for emergencies now I cant use it and will have to have it modified to work on voice recognition.

It seems to me that I take 1 step forward and 2 steps back.

I am receiving help and support from paraquad, and without that I would be lost.

Sorry if I sound negative, because I dont mean to I just need to talk to people who know what these diseases do to you because unless you have walked a day in my shoes you haven't got a clue.

Most of the other problems caused by this disease are fairly well under control, and for that I am truly thankfull.

lurks in the background of many of us...I appreciate my limited mobility more due to incidents last year and this year involving broken and sprained feet and wrists. Little things, such as discovering the kitchen counter is suddenly at nose height or having the wheelchair NOT fit thru certain essential doorways are well.... not uplifting experiences.

Soo many basic actions of and in life are suddenly, well, VERY different!

My worst day...almost was when the doc signed off on what I thought was to be a new 'temporary' capper tag, changing it to 'permanent'. I looked at him and went: "well, that gives me an idea of what's ahead down the road for me". His reply was: "You can always turn it back in, if you don't need it". Sigh!?

We all have to fight whatever fight we can, as best as we can... No one else will do it for us, will they?

Good thoughts and good heart to you! - j

BTW: What's paraquad? Sounds like a support organization?

Hi Dorvad, Its good to read that the other aspects of PN are under control though it must be very difficult for you to come to terms with these limitations you have.
Don't be sorry about sounding negative, geez who wouldn't be, sometimes it helps a little to let out some of your frustrations as you know there are many here that truly do understand.
I haven't heard of " Paraquad " either, who are they mate, i live down south of you, in Victoria.
Brian

i found 2 links. first one is USA..the second an Aussie one for you brian.

www.paraquad.org/

www.paraquad.asn.au/

short blurb on what they are:

Paraquad is a private, 501(c)(3), community-based Center for Independent Living. Founded in 1970, we provide independent living services to adults and children with all types of disabilities. Our work with the community seeks to effect real positive change by removing not only physical barriers, but the intangible barriers as well. Open entry to services, education, employment, housing, and health care means that people with disabilities can lead independent lives through choice and opportunity.

Dahlek,
What is a "Capper tag"?

i'm just full of info tonight..lol..might be on empty tomorrow...

a capper tag is a handicap parking tag. once a dr says perm..then you can get the plates for your car. ( that might be different in different states )

Thankyou very much Curious

you are very welcome.

. . . at least that's what I think. Somedays I get through the day just fine and other days I get this enormous sense of fear of the future. Dorvad, I'm so sorry that you have lost the ability to drive your car and your mobility scooter. I hope something can be done to help you soon! And you can PM me anytime you need someone to talk to !

My hubby ordered me a scooter so that we can start to go to some things in the evening when my feet are very tired and the pain is setting in. It's not here yet but I can't wait. We live 90 miles from Vegas and I have missed some great art exhibits as they traveled through plus I love the theatre, (I majored in Speech and Theatre Arts.) and there is no place like Vegas to see shows. But getting through one of the hotels is like walking 4 blocks, something I just can't do anymore.

Well, I hope that something good comes your way soon. And by the way, what size are your shoes, perhaps I can walk in them !

Please take care,
nancyh

expanding what has become your zone or circle of comfort! It truly gets HARD and often complicated doesn't it?

THAT and what always seems like CONSTANT WAITING for the other shoe to drop [in which direction?]. As nancy-h said about your shoes, I truly believe not only your shoes, but your heart are far bigger than mine in terms of courage. It IS courage you know, meeting it all and adapting to it.

I believe it's places like this, and the internet as well that can open up parts of our worlds as other parts close or get smaller. There is also that immense POWER of our MINDS that can help us achieve, on any level, things we never could have imagined doing or being before!

Vent away! It's far healthier than keeping it bottled up inside and eating away.

Curious: thanks for elaborating on things.. Am sending some electronic super-dark chocolate to ya!

Nancy & Dorvad: please, please tell me all about your scooter decisions...why you got Z brand over a different kind; what works, and doesn't; ramps into and out of house, etc. All that practical stuff! I don't need it now...but....when I do, I don't want to go about it being dense as a fence post!

May we all find at least ONE thing truly stupid or absurd in our lives today! It's usually always something different! - j