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My husband's symptoms began in July of 2008 with voice problems. He had been in a horse accident in May & we thought he might have broken his nose. By October, he was having trouble projecting his voice & felt like there was drainage. He had a firefighter physical so we thought we would get some answers. The doctor told him it was just the dryness in Wyoming & suggested we buy a humidifier. We did & nothing changed. We also realized there were some hand & leg things happening that we had thought were arthritis or just getting older. He also had the pseudo bulbar affect which we did not understand. We were all over the internet (Web MD, etc.) and nothing was coming together. We were thinking brain tumor or stroke. Just not sure. My mom is a RN and she was also searching. We did not know what type of doctor to start with so we went to a general practitioner with a timeline and notes in hand. Halfway through the appointment the doctor stopped listening & rolled her eyes. My husband told her that he felt as though his soft palate was falling (classic sign). She told him he had a chronic sinus infection & gave him an antibiotic. I questioned her with the other symptoms, especially the emotional lability. She wrote out a CAT scan order & told us to complete the antibiotics and if it would make us feel better we could get the CAT scan. He completed the antibiotics with no results & I did not think the CAT scan was the right test. I decided that we should just make an appointment with a neurologist. We knew something more was going on. Of course, we could not get an appointment for 6 weeks so I double booked at two different neurologists & got on cancellation lists. The day after Christmas my mom was going through all her medical books, cross referencing symptoms and was led to ALS. She called us immediately and said you better go look up ALS. We went straight to the computer & realized Chuck had classic symptoms. What a relief & tragedy all at once. We cried at the realization but knew that we would learn more at the neurologist in 6 weeks. Chuck's cousin was dating an ER doctor & he recommended that we go to the ER immediately to rule out a bleed, tumor or stroke. He did not feel that we wait 6 weeks in the event it was not ALS. We spent New Year's Eve morning in the ER. We went in saying we think he has ALS, a bleed or tumor. At first they acted like we were crazy but the doctor was very attentive to our concerns. He did a MRI & bloodwork immediately. He ruled out stroke, bleed, tumor & MS but agreed that something big was going on. He told us we were on the right track with ALS or Myastenia Gravis. We explained that we already had an appointment with the local neurologist. He called the neurologist & sent the MRI electronically & they consulted while we were still in the ER. He came back & said the neurologist cleared his schedule & we now had an appoinment Monday at 8:00 AM. The neurologist ran the usual tests & took us into his office. He was very compassionate & asked if the ER doctor had mentioned ALS. We explained that we mentioned ALS first. He seemed relieved. What a horrible job to have to tell people they have this awful disease. We can home & cried a bit. My husband said, "Okay, we have cried. Now we need to get on with life." He had always believed in living life to the fullest & now it took a new meaning. We called family members & our pastor. We have tremendous faith which is so comforting. We both agreed not to be mad. We understand that things happen and we don't understand why. Someday it will be revealed. My husband came up with all these catchy sayings for t-shirts & keeps a list in his pocket all the time. He calls them his "Terminal Tees."

We feel very blessed that we received a diagnosis in one month from seeking medical care. We know that so many PALS have a nightmare in the medical system getting their diagnosis. We owe everything to my mother. We live in a small community and our doctor only had one other patient with ALS. We were referred for a second opinion in Denver at a MDA clinic. The doctor recommended against Riluzole. She suggested he save his money & buy a nice fishing rod!  She also told us about a drug trial for the pseudo bulbar affect (PSA). This trial was a blessing for Chuck. The first dose completely took away the PSA! It improved his quality of life tremendously. He was so excited to be able to tell a joke and get to the punchline without cracking up! 

In July, he was named the MDA Ambassador for ALS in Wyoming & we participated in the Jerry Lewis Telethon. What an amazing experience! They filmed our family for 2 hours & put together an amazing piece for the Telethon. We feel so blessed to have that footage.

We are pleased to say that the disease is progressing slowly. Since we live in a small town, support & services are non-existant. In fact, there are currently only 15-17 PALS in Wyoming according to the MDA. We are thankful for Patients Like Me for support & to learn about other PALS experiences. We hope to connect with many & support one another!