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I had a difficult time starting December 18th when I fell and broke my ankle. This is the only time I have have broken a bone in my life, and it made me totally dependent on my husband, and trapped at home. I had a splint for 3 weeks, then a hard cast for 3 weeks, then finally a walking cast. I...

The first neurologist I saw diagnosed me with Primary Progressive Aphasia. He hadn’t seen the MRI but just heard the technician’s report. I asked for a second opinion from a neurologist that I heard was much more trusted. He looked at the MRI; CT scan; blood tests to rule out other illnesses...

Jo

Since she has been diagnosed, she can start treatment to slow the progression of the disease. I was diagnosed with ALS in June after symptoms for at least 6 months. I was immediately started on Riluzole and have since started Radicava infusions. My doctor got a home health care agency involved...

Still here and able to speak and eat, but I broke my ankle before Christmas so I am pretty much wheelchair bound for now. I will see the Orthopedic on January 6th and hope I have good news. It is frustrating to suddenly be so dependent on my husband for everything.

Hi Chelsea, I was diagnosed with Bulbar onset ALS in June, which significantly affects my speech and some of my swallowing. I had a speech therapist work with me to do “voice banking” which allowed me to save phrases on computer to use when I am no longer understandable. They do have computers...

Laura, so sorry to hear of your situation. I started having some slurring in March and finally had an MRI in April and was misdiagnosed by the first neurologist I saw, then saw one June 9th who diagnosed me with bulbar onset ALS. Since that time, my disease has spread to my limbs as well. I just...

So sorry to hear about your loss. It is so encouraging when you see someone handle a serious illness with such courage. I too have been diagnosed with bulbar onset ALS and one doctor reminded me that I can be a light to others who face challenges. I hop this is true for me as well.

I have started having some finger/hand/arm clenching in one hand, so I was glad to get your instructions.

I am getting very anxious and frustrated that I have not been able to start Radicava yet. I know it is expensive, but Searchlight is working on my case too. My walking has gotten worse-I fell 2 times last week. A friend gave us a walker, which I may have to use soon, and we bought a wheelchair...