My introduction continued

A little bit about my ALS. My ALS was difficult to diagnosis because of my unusual presentation. My first symptom was a hoarse voice. I attributed that to my allergies. However a few months later I began slurring some words, not many but those words were very hard to say. I remember trying to tell someone to fax something tomy office but I couldn't say fax. It came out "fa", no "x" sound no matter how hard I tried. When a co-worker told me I was slurring my words I knew it was time to find out what was wrong.

Thus began the marathon of different doctors and many, many tests. Because my only obvious symptom for quite a while was the deterioration of my voice I was a puzzle. At first I was sent to an ENT (ear, nose, and throat doctor). The theory then was that I may have a rare nervous system disorder called spasmodic dysphonia which effects the vocal cords. This is very treatable. Most often botox injections at the site of the "paralyzed" vocal cords provides relief. No such luck. The ENT said I didn't have spasmodic dysphonia and referred me to a neurologist.

The neurologist, my first, did EMGs, an MRI, blood tests, and physical exams. The possibilities were Myasthenia Gravis or ALS and something else I can't remember. Because I didn't yet have some of the more obvious symptoms of ALS such as weakness in my arms or legs this doctor was willing to give me a definite diagnosis although he said Myasthenia Gravis had been ruled out. Unfortunately an ALS diagnosis is often obtained by ruling out everything else. I asked for a referral to an well-respected ALS expert (neurologist #2) at the University of Wisconsin Hospital in Madison.

Finally I received a definitive diagnosis of ALS, about 16 months after I first sought answers to my voice problems. I felt a mixture of relief and fear. I am a nurse and had suspected ALS for quite a while. As a compulsive researcher I already knew the prognosis was bad. I was and am determined to beat the odds and so far I have. It has been almost five years since my initial symptoms and I am doing better that expected. The common time-frame is ALS patients live three to five years. So far so good!

I still have very good fine motor skills hence my ability to type fairly quickly. That is a big thing because I post on message boards, e-mail, and use a hearing carry over (HCO) tty device to "talk" on the phone.

I have so much more to say. As they say, "The saga continues".

My introduction

Hi! I've never blogged before but here I go.

I use Speechless Mary as my "name" because the first symptom of ALS or Lou Gehrig's disease for me was deterioration of my speech. Major bummer because I liked to talk, a lot. I have a form of ALS called bulbar-onset; more on that later. Now I am speechless in the conventional sense. However I e-mail, write notes, and now this blog. I can "talk" using a small Windows-based device that always me to enter what I want to say and then actually says it in a voice of my choice. Slower than normal speech but at least I can speak, sort of.

If you don't know about ALS a good basic description can be found at: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm#What%20is%20amyotrophic%20lateral%20sclerosis

Loss of speech was just the beginning. I have decreased strength on my left side resulting in very poor balance and a tendency to drop things from my left hand. Before I got a walker and now my fancy power wheelchair I "fell down and went boom" a few times. The last time was in January and I couldn't get myself back up for the first time. My hubby called 911 and several handsome firefighters came to help. The biggest embarrassment for me wasn't falling, it was that I was only wearing a nightgown! That made the whole situation very funny later.

Despite having ALS for almost five years I am trying to as much as I can for as long as I can. We have been to the coast of Maine, gone on an Inland Passage cruise in Alaska, and spent some time in New Mexico. I love to travel and will tell you more about that in the future.

Although being in a wheelchair requires more planning a lot of things are still doable. I even found a big perk. Seeing Stevie Wonder is on my "bucket list" and I never thought I would be able to see him but he is coming to Summerfest in Milwaukee (I live there) on opening day. http://www.summerfest.com/flash/ My hubby got the best seats anyone could get and they are for handicapped people. The seats are in the first row right next to the stage. The area is raised for a better view. We have to be escorted by security under the stage to get to our seats. How cool is that? I am a VIP!

That's it for now. Thinking and typing tire me out, especially the thinking part.

Mary