Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi, Norma : I have given up driving, voluntarily, before my neurologist ,Dr. Strong (at the University of Western Ontario) was forced to turn me in to the Provincial authorities, an action that would cause me a great amount of inconvenience. Although , I have to have my wife ferry me around, I have much more peace of mind, and besides that my wife smiles when I 'must' drive in an emergency. In place of my car; I use my scooter. It's not prestige, at this stage - but common sense and safety. all the best, NKBnormie@... wrote: Dear PLS Friends, Thanks to Flora, Maureen, Susieq, Judith, Sue, Tawny and for sharing with me about your driving and early symptoms. I have been back to the ALS Clinic at Duke twice now. I was dreading both visits but am very happy with the out come of both. I guess my official results will be discussed when my husband and I go back on 5/2 for my appointment with Dr. Bedlack. My EMGs that I had done were very extensive and while not painful were uncomfortable - however, the great news if I understood correctly is that there is not lower motor neuron disease at this time. My driving test which I was dreading the most was actually a fun time with two very nice young occupational therapist. They will be recommending that I get hand controls but for now I still have my license and will take the challenge to learn to drive with hand controls. However, I probably will not being driving alone for any distances. My understanding is that I have upper motor neuron dominant ALS at this time and to be PLS I will have to go several years with no lower motor disease. Can I still be apart of your group?? Thanks, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Eva, You made me chuckle!! You are right about the MDA -ALS clinic. It has been helpful and the resources are great. So far we have borrowed two books which have provided useful information and clarified some things for me. -Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Eva, You made me chuckle!! You are right about the MDA -ALS clinic. It has been helpful and the resources are great. So far we have borrowed two books which have provided useful information and clarified some things for me. -Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 >Norma, Sure hope the test results come out for the best that they can be!! You are always welcome in this group. We are family and we don't kick you out--like the song " Hotel California " says " You can check out, but you can't leave! ;o) Best Wishes! Sue Me > Can I still be apart of your group?? Thanks, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi Norma - I think that is great news. The wait can be up to 6 years if you have speech involvement. But remember there are advantages---if the DX has ALS anywhere in it: *you get quicker SSDI *you can be included in any ALS research *you get to reap the benefits of ALSA clinics, loaner closets, support group, and literature. *you get to reap the benefits of MDA-ALS as well. Once it changes to PLS you get a lot of 'what's that' I say---market the verbage of your DX well. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi Norma - I think that is great news. The wait can be up to 6 years if you have speech involvement. But remember there are advantages---if the DX has ALS anywhere in it: *you get quicker SSDI *you can be included in any ALS research *you get to reap the benefits of ALSA clinics, loaner closets, support group, and literature. *you get to reap the benefits of MDA-ALS as well. Once it changes to PLS you get a lot of 'what's that' I say---market the verbage of your DX well. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi Norma - I think that is great news. The wait can be up to 6 years if you have speech involvement. But remember there are advantages---if the DX has ALS anywhere in it: *you get quicker SSDI *you can be included in any ALS research *you get to reap the benefits of ALSA clinics, loaner closets, support group, and literature. *you get to reap the benefits of MDA-ALS as well. Once it changes to PLS you get a lot of 'what's that' I say---market the verbage of your DX well. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Norma! Congrats! I too am still awaiting some time to pass without the lower motor neuron symptoms----Duke is a bit more hip with dx cause well, duke rules hee hee. Welcome again to the group!! Tawny NKBnormie@... wrote: Dear PLS Friends, Thanks to Flora, Maureen, Susieq, Judith, Sue, Tawny and for sharing with me about your driving and early symptoms. I have been back to the ALS Clinic at Duke twice now. I was dreading both visits but am very happy with the out come of both. I guess my official results will be discussed when my husband and I go back on 5/2 for my appointment with Dr. Bedlack. My EMGs that I had done were very extensive and while not painful were uncomfortable - however, the great news if I understood correctly is that there is not lower motor neuron disease at this time. My driving test which I was dreading the most was actually a fun time with two very nice young occupational therapist. They will be recommending that I get hand controls but for now I still have my license and will take the challenge to learn to drive with hand controls. However, I probably will not being driving alone for any distances. My understanding is that I have upper motor neuron dominant ALS at this time and to be PLS I will have to go several years with no lower motor disease. Can I still be apart of your group?? Thanks, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 hey norma, that is great news about your driving! i am so happy to hear that!! and i'm glad you like the clinic; i really like the people there. now we can get together:-) sarah > > Dear PLS Friends, Thanks to Flora, Maureen, Susieq, Judith, Sue, Tawny and > for sharing with me about your driving and early symptoms. I have been > back to the ALS Clinic at Duke twice now. I was dreading both visits but am > very happy with the out come of both. > I guess my official results will be discussed when my husband and I go back > on 5/2 for my appointment with Dr. Bedlack. > My EMGs that I had done were very extensive and while not painful were > uncomfortable - however, the great news if I understood correctly is that there is > not lower motor neuron disease at this time. > My driving test which I was dreading the most was actually a fun time with > two very nice young occupational therapist. They will be recommending that I > get hand controls but for now I still have my license and will take the > challenge to learn to drive with hand controls. However, I probably will not being > driving alone for any distances. > My understanding is that I have upper motor neuron dominant ALS at this time > and to be PLS I will have to go several years with no lower motor disease. > Can I still be apart of your group?? Thanks, Norma > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.