ALS – My Tobii

I never thought I would get excited about writing the minute I got out of bed but now I can hardly wait until Mark is able to wheel me into the living room where Tobii and I meet every morning. I love writing and I love reading emails because those are the only two things I can do on my own.

Every day I spend about three to four hours with Tobii but we don’t always get along and we’re constantly working on our differences to improve our typing methods. Tobii doesn’t like when light reflects off her screen and is sensitive to some vibrations so we are constantly moving to find the right spot in our home to hang out. If moving doesn’t help and I’m still struggling to type with my Eye Gaze machine we recalibrate my eyes which usually helps and I am back to writing again.

It’s been almost a year since I started using my Tobii for blogging. Now it seems normal that I type with my eyes and not with my fingers. Who would have thought I would be typing with my eyes to communicate. Now it’s time for me to take the next step and use it for talking.

Happy 55th Birthday Vikke

My sister Vikke is tough as nails and as compassionate as Mother Teresa. She will fight for you if she believes in your cause and she sticks up for the weak and cares for the elderly. I have so many noteworthy stories to share today about Vikke but I will keep it to one. It’s about her determination and stamina.

When Vikke was studying for her real estate license we spent quite a bit of time together. We laughed a lot while studying but Vikke was nervous that she wouldn’t be able to pass the difficult test. Vikke passed the test because of her hard work and determination to never give up. It didn’t take long before Vikke became a successful realtor. She loved her new career and was learning a lot but all of a sudden life happened. Vikke was faced with making a very important decision whether to stay in a career she loved and was getting very good at or step up and take care of her grandchildren that she absolutely adored but were a lot work because they were so young. We all know the path Vikke chose and the sacrafices that both Vikke and Bob have made for their grandchildren but we also know the impact she has made on their young lives.

Happy birthday Vikke. I’m so proud of you.

ALS – During the Night

At bedtime Mark carefully picks me up from my wheelchair and gently lays me into our bed. We’ve been sleeping in our bed again not because it’s more comfortable than the couch but because I want to be closer to Mark. Night time can be really scary or lonely with not being able to talk or move. Once in bed Mark rolls me to my side putting one pillow against my back to help support me and one between my legs to better align my hips and legs. He makes sure my hair is out of my face as he adjusts my head pillow and puts my bite splint in my mouth. I’m starting to get hot spots on my heels which could easily turn into bed sores so Mark wraps my heels in a soft material like lambs wool.

I usually fall asleep right away and sleep for three to four hours before I wake up and need to be moved. Before I wake up tired Mark I contemplate whether I can go back to sleep or not. I try to adjust my shoulders by myself but they won’t budge. My legs are the only things I can move to help me get comfortable but they are starting to feel like really heavy limbs. Last night when I woke up my left ear was burning because it was bent over while I was sleeping so I wanted Mark to rub it. I tried to explain for about five minutes before Mark understood what I was trying to say. When he finally guessed my ear he thought I said no and kept naming more body parts until we came back to my ear again.

I want you to understand that I am one of the lucky ones dealing with ALS because I still have a voice. Some ALS patients lose their voice early on and don’t have a Tobii to speak for them or have a companion to sleep next to them. Mark and I have had two years to communicate with each other and work out the bugs so that I am always made comfortable. Some people never get this time.

I am truly one of the lucky ones.

ALS – Emotionality

Yawning, laughing and crying are all accelerated with ALS.

The first time I noticed I was yawning more than usual was at church. My yawning seemed so pronounced with wide, open mouth yawns and they just kept coming. I was a little embarrassed. Later, at my first appointment at U of M, we found out it was a symptom of ALS along with laughing and crying. I can always tell when I’m ready for my yawning pill (Nuedexta) because I start yawning uncontrollably. Yawning is exhausting and sometimes I’m afraid I’m going to dislocate my jaw because my mouth opens so wide.

Another really annoying thing that happens when I yawn is when I exhale my lungs won’t allow me to exhale all at once and it lingers for awhile causing me to make funny sounds until my yawn is complete. These yawns can be both embarrassing and scary because I can’t inhale until I’ve completely exhaled and sometimes the exhale seems to last forever. If I chew gum or suck on a cough drop my yawning stops which is a welcomed relief.

Laughing at the wrong time can be very embarrassing also. Once again while sitting in church I’ve started to giggle and couldn’t make myself stop. I’m sure the people sitting around me thought I was rude but I couldn’t stop. My crying is bothersome because it makes everyone around me feel sad, but sometimes I’m just really sad.

A Glimmer of Hope

We should never give up hope.

Last week, within minutes of each other, both Kelly and Corey sent us an article about a drug that may help modify a gene to help people with ALS and other neurological diseases. Clinical trials on this drug have shown positive results but it’s not yet approved by the FDA and could take three years or more to approve. I and many others may not have three years so I am asking you to consider reading this article and signing the petition to help get this drug approved sooner.