Recent content by lisatsmith13

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...

I was shown a way to “ramp” the biosphere pressure gradually so ask the person who set up the machine how to do this. I have a Triligy machine which is said to be better than others.

I started having hoarseness a year ago, but it was assumed to be related to my chronic sinusitis and periodic infections. In March I started having slurring. By the time I saw a really good neurologist in June, it was obvious and I was diagnosed with bulbar onset ALS. Despite taking Riluzole, my...

My Pulmonary Function is 70%. My doctor plans to put me on a Triligy at night, Does this really help to have more energy in the day and fewer headaches? Does the doctor do the fitting of the mask and setting?

My neurologist sent me to another doctor who is planning to do a muscle biopsy in my leg. Just what will this tell the doctors? I have Bulbar onset ALS, but even before those symptoms started, I was having problems with falling. Since then my leg muscles are definitely weaker. Is the test a way...

I was diagnosed with Bulbar onset ALS June 9. I am 65 yrs old and just retired when I began to have these issues. I am still able to speak but slur a lot, especially later in the day. I am anxious to be evaluated by a speech pathologist so we can keep track of any changes and work on...