Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 HI SHIRLEY WE HAD AN OHIO CONNECTION LAST SUMMER. DON DIDN'T SHOW MUCH INTEREST IN IT AND I DRUG HIM ALONG ANYWAY. IT WAS THE BEST THING I COULD HAVE DONE. ALTHOUGH HE TREATS THE COMPUTER LIKE HE TREATS FRUIT (NONE WILL PASS HIS LIPS) HE DOES NOW ASK AND WANTS TO KNOW WHAT IS GOING ON. HE WAS VERY IMPRESSED BY THE PEOPLE WE MET AND WE EVEN MADE A TRIP TO SEE A COUPLE IN THE FALL. I THINK IT DID HIM A WORLD OF GOOD AND I KNOW IT HAS ME. WE LIVE IN NORTH CENTRAL OHIO AND ARE OPEN FOR ANY GET TOGETHERS THAT ARE NOT TO FAR. (WE DRIVE A GOLDEN OLDIE ) THIS WINTER HAS REALLY BEEN TOUGH ON HIM. HE GETS COLD AND CAN'T MOVE HIS FEET. I END UP KICKING EACH FOOT FOR EACH STEP. WE AREN'T EVEN DOING THE SWIMMING RIGHT NOW DUE TO THE PROBLEMS OF GETTING HIM IN AND OUT OF THE CAR. DON'T GIVE UP ON YOUR HUBBY. COPY OFF WHAT YOU THINK HE WOULD BE INTERESTED IN AND GIVE IT TO HIM. WE HAVE MADE A BOOK UP FROM THE ONES I PRINTED. LOVE TO ALL BONNIE & DON OH Re: Newly Diagnosed > thanks for the information the only problem is that I can not get away for > that long of time to attend but would be interesed in anything that may be > happening in Mich so if anyone knows of upcoming events in Michigan would > like to attend just let me know. I missed the last meeting in Michigan as I > thought my husband would want to go and he at the last minute decided not to > attend so then I was not able to make arrangments for myself with such short > notice. So in the futrue will know not to wait on him. As he seems to show no > interest even thou he is the one with the illness. Will don't want to bore > you to piecies so I will let you go for now. Thank you again for the input. > Shirley > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Bebe (cute name). I have has PLS for over 20 years, but in the beginning it took me almost 3 years to get a diagnosis, going to the best hospitals in Boston. I have found that many doctor's don't know about PLS, and I was fortunate enough to finally find two neurologist who know about PLS. PLS is called " the garbage disease " (that's what I was told), when the don't know what is wrong, PLS. But my diagnosis has been reconfirmed, but it was " hell " until I found out what was wrong. So I know what your going thru and I am sure all these people have gone thru the same thing. It's not fun not knowing, and when you finally get the diagnosis, then you have to take a deep breath, and learn to deal with it. So hang in there,nd this is a great place to be, this is a great group of people, from all walks of life, so feel free to dump on us. Good Luck, and Happy New Year. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Hi: Am new to this chat room because I am new to motor neuron diseases.After 17 tests the doctors are positive that I have a motor neuron disease. However, they don't know if it is an unusual beginning of ALS or PLS. Right now I'm in a " waiting zone " . Playing havoc with my emotions. Would appreciate contact with anyone that might have suggestions or who has had a similar experience. Right now I feel so alone. Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi: This " Newly Diagnosed " lives on Long Island and would be interested in more information regarding the meeting being held here in April. Thanx Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi Friends: Really thought that I was unique in being " newly diagnosed " ....again to find out that I only one of many. Many thanx for those of you that have responded to my call for help. Would like to know if there are any members that are on LI, NY or anything that may be going on within traveling distance. Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi Bebe, Welcome to PLS Friends. I am a 53 year old woman with PLS. My first symptoms were in 2/94 and I wasn't diagnosed until 8/98. My doctor still writes my diagnosis as " PLS vs ALS " since I now exhibit some minor ALS signs as well. I get around with a four wheel walker w/brakes and use a wheelchair for the long hikes. I still drive. I just throw my walker in the back seat and off I go. I take lots of vitamins, baclofen for spasticity and try to do what I can each day without getting over-tired. I also try to stay as stress-free as possible as stress is a big enemy of PLS! Since PLS is a disease of exclusion, it sometimes takes a while to get diagnosed. Hang in there. We'll be praying for you. You've found some good friends here. You will get lots of good advice and help and information here so ask away! Tell us about yourself and again, welcome! Take care. Sue Niquette Winooski, Vermont Newly Diagnosed > Hi: > Am new to this chat room because I am new to motor neuron > diseases.After 17 tests the doctors are positive that I have a motor > neuron disease. However, they don't know if it is an unusual > beginning of ALS or PLS. Right now I'm in a " waiting zone " . Playing > havoc with my emotions. > Would appreciate contact with anyone that might have suggestions or > who has had a similar experience. Right now I feel so alone. > Bebe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Hi BeBe!!!! I love your description of your cane!!! Makes my plain brown wood one sound so dull!!! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Laurel: Two weeks ago I was wearing a purple suit at work. My supervisor walked by my open door and mentioned that purples were my colors. Then she told me about the book " when I Am Old I. Shall Wear Purple. " Sounded like a great book so on the way home I stopped at the bookstore and bought it. However, since I am not able to read more than one book at a time I have to finish the second Harry Potter book. I decided to read Harry Potter just to find out what every one was talking about. I loved the first book and am enjoying the second. Harry Potter is sort of balancing all the PLS research that I am doing on the Internet. Happy New Year Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Dear Beth: Plain brown canes can be decorated with decals or ribbons. I was told about a friends colleague who had to use a cane because of a broken leg. She decorated her cane seasonally....orange, black and pumpkins in October, turkeys for November etc. I might try that at work because I work with some children, not too sure how a group of adolescents will react. I've got to do something to lighten up, the doctor would probably suggest losing some weight rather than decorating up a cane. Bebe Quote Link to comment Share on other sites More sharing options...
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