Hi Judith Ann! I had no trouble walking almost normaly with them or driving with them right away. It's so much easier walking because it allows you to walk heel first rather than toe first like you do with foot drop. You also dont have to use your upper leg to do the high step you do with foot drop so that your toes don't drag tripping you. So it takes much less energy to walk. I have started using a walker full time since the first of the year for safety. My balance is really bad without the walker. Are you having problems with yours or are you considering getting some? Mine are made of carbon fiber and very light weight. I highly recommend them.
Oh I like my power naps too Walker for me for long distances...seriously thinking of getting AFO's to help me out so I don't trip so much. Also looking into wheelchairs now for best deals and what my insurance will cover. legs definately getting much weaker...going to Disneyland in a couple of weeks and will definately be using a wheelchair. Do you have a manual or pwc? and if so what kind?
Thanks for the howdy Judith Ann...how are you doing? i am keeping busy with the Treat Us Now committee and it gives me a sense of purpose....I have always been a fighter for causes....injustice gets under my skin and I want to do something about it. Tell me how you are....love you
Hi Judy, I just got back from a Women's conference with my mom and sisters. This is something we have been talking about for a long time but possible ALS kind of made sure we booked it sooner than later. I have an apt. scheduled at an ALS clinic at the end of April. I just started thinking about insurance and wondering if its too late to get long term care insurance or disability insurance. Do you know anything about that? I'm glad you dont have the cramps, do you have any pain? wishing you a great day! Cindy
Hi Judy, I have had blood tests, EMG, NCS & MRI of neck and spine from the first neuro. He talked to me about ALS and said he wanted to call in the big guns. He sent me to a Dr. who he trained under at LSU Medical in New Orleans. This Dr. examined me looked at results from other tests then did another EMG or NCS (whichever one is with the needles). THen he said that it is a motor neuron disease, that there was no need for any further tests, that he could not say that it was ALS or not ALS but they had enough to want me to start on Rilutek and that they would just have to watch the progression. Then he sent me back to the first neuro who explained that they would not diagnose as ALS unless it was affecting my speech, breathing or swallowing. Then he said he would see me in 3 months. I could call if I needed anything before then. What is your pt doing with you? Are you doing any kind of exercise on your own?
Judy, I am still going between thinking this is all in my head to I know its real. I have been having these cramps for so long and I am still able to get around and do almost everything I ever could. However, most mornings I roll out of bed with cramps in my feet, toes pointed down and I have to push from the wall to get them flat again. Today is the first time I couldn't get them flat. . .I fell over and then pulled them flat. Is this par for the course with MND or ALS? Reminder. . . I have been told by two neuros it is MND but they are not sure what form. They also said there is no need for further test. Shouldn't I be doing something besides waiting for next apt. in 3 months? Thanks for responding. Hope you are well today! God bless, Cindy
Sorry it took me so long to reply. I went to a neuro in Little Rock. In the beginning they thought I might have MG or MS. This neuro did testing that he said ruled out those things. I began having other symptoms and his exam was not very thorough at all. So I asked for a referral to UAMS in LR. Saw a neuro there who specializes in EMGs and treats ALS patents. She says I don't have ALS for which I am thankful!! but offers no real explanation for my symptoms. I have been to a psychiatrist and am awaiting an appointment with a rheumatalogist. There is an ALS clinic at UAMS in LR so guess I could go there if the need arises. I have considered going to Mayo if none of these avenues pan out. It is hard knowing things are going on in your body and not knowing why, but I KNOW it is NOTHING compared to the hardships you endure everyday!! I'm glad you have found a good doctor. Thanks for sharing your info with me. Hope you are doing well-----KITT
I was just diagnosed with MND this month. I have a million questions but, I too have a strong faith in God and trusting Him to carry me through. Thanking Him for this forum. Are you doing Physical Therapy?