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Wednesday, June 26, 2013

Since Clinic Day - May 15, 2013

We had our field day at the ALS Clinic on Wednesdy, May 15. There are a few things that came out of that visit.

My lung capacity measurement was not as strong as three months ago. They ordered a cough assist device for me which was soon delivered to my house. I'm getting to know this device. The best way I can describe this contraption is by comparing it to a shop vacuum. If you were to put a shop vac in reverse and stick the hose in your mouth, it would blow a bunch of air into your lungs. (I don't recommend this.)  If you suddenly switched it to its normal vacuum mode, it would suck all that air back out (along with whatever). That is essentially what the cough assist does. When the respiration therapy guy brought the device over, he showed me all the settings and taught me how to change the settings and use the thing.  I have used it daily for over a month.  The main benefit of using it at this point is that it helps loosen stuff up so that I can cough it out under my own power.  For sure it "sucks." I fear that the main stuff getting sucked out is my brain. 

They also ordered me a walker with four wheels, a hand break, and a seat. I haven't had any problem using my orthotics or my walking stick. The feeding tube was not a big deal for me - in fact I like it. But the idea of walking around behind a walker does not thrill me.  It doesn't make an impressive fashion statement.  They explained it to me like this.

All of us have a certain amount of energy to expend - an energy budget. If you have ALS, your energy budget is smaller than if you were an Olympic athlete. We all have to budget our energy. So whether or not I use the walker is a question of where do I want to spend my energy budget. If I want to use it by walking around with shaky legs, feeling like I might fall down at any given moment, I can make that choice. But, that is a lot of energy to expend that can't be used somewhere else. So, I picked up the walker from the MDA loan closet yesterday. They had two of them to choose from - a red one and a green one.  I picked the "British Racing Green" because it is the sportier of the two.  I use it primarily around the house.

Speaking of falling down, I gave my friends (John and Jackie Jones, and Mark and Laurie Selman) a show last saturday evening.  I was walking around without my walking stick or the walker.  I went outside to see them off as they were leaving.  I turned to go back up the porch steps and tripped on my toe (or something).  I did my own version of a "face-plant" on the porch steps.  I scraped my leg and hand, sprained my pinky finger, and raised a nice goose egg on my forehead.  They rescued me from myself and helped me back into the house.  (Sorry you guys - but THANKS!!)

Then this last Monday evening I fell backward on the kitchen tile and put a nice goose egg on the back of my head.  So with bumps on the front and back of my noggin, my head is nicely and evenly balanced.  I've decided that if I am going to fall down, I need to plan it better and do it on the lawn.

Back to the clinic - they pointed out the difference in the muscles in my left hand compared to my right hand. My strength in my left hand is not what it was. I notice it the most when I play the guitar, or when buttoning, or unbuttoning my clothes - especially the top button on my Levis (see my previous post). I love to play the guitar, especially with my son, Joey. Heather, my physical/occupational therapist friend wrote me a prescription to go visit the hand-clinic at the UofU orthopedic center. It is possible that they could make me a specialized splint that would help my thumb strength when I play the guitar. I don't think it will help with the other problem mentioned here (the top button problem).

As usual we enjoyed the people at the clinic. Our speech therapist has left the U, so we met a new speech therapist.

My speech is crappy.  Gerrí and I converse mostly with my iPad.  I have a nifty app that allows me to type what I want to say.  I push a "go" button and it speaks whatever I have typed.  It is amazing how this technology has evolved.  The cost for this app is a few dollars.  Not that long ago many people would not be able to afford a speech synthesizer and, if they could afford it, they sounded like a robot.  Anyone who has watched a program featuring Stephen Hawking has heard what the technology used to sound like.  Now I can speak with an American or a British accent.  I can also decide if I want to get in touch with my feminine side.  That's right I can use a female American or British voice if I want to.  I need to make a little video to compare my speech with the video I posted in March and to demonstrate why the iPad does a better job than I do.  Maybe that will be my next post.

We also met a new doctor who has joined Dr. Bromberg in the clinic. Her name is Dr. Summer Gibson. Having another attending physician there means that the clinic will be able to see more patients on clinic day. Dr. Gibson is very nice - we are looking forward to getting to know her better.

Every time Gerrí and I meet someone new at the ALS clinic we ask them the same question. "Why did you choose to specialize in an illness for which there is no cure? Doesn't that get depressing?" Every time we ask this we get similar answers, and the answers remind me of when my Mom was on hospice. The hospice nurse who helped my mom and our family felt that her work was like a sacred calling. Maybe I'm overstating that somewhat, but that is the gist of it. Gerrí and I were touched when we asked Dr. Gibson the same question and we got the same kind of answer. It takes a special person to go to work every day to help people along their life journey, knowing that the results are eventually the same for every patient. We sensed the passion that Dr. Gibson feels for her work. All of the health care professionals at the ALS clinic have expressed the same thing.  Amazing!

Sunday, June 2, 2013

Blessings and Miracles

From Gerrí -

I will admit that I wasn’t sure how I felt about Kevin starting this blog about living with ALS.  I’m a very private person and Kevin has pretty much shared everything about the progression of the disease.  Though it is hard for me to read, I know it’s been a good thing for Kevin to do.  He is very matter of fact about this so I’ve had to encourage him to “happy it up” on some of his posts so it’s not so depressing for everyone to read, including me.

When this whole situation started, we knew quickly that there was a high likelihood of Kevin having ALS.  Still, it was so hard to wrap my brain around.  How could something like this happen to Kevin?  Healthiest person I know.  But time passed with more symptoms and more adjustments in our lives and there was no denying it.  It has been about a year and 8 months since the symptoms started and I am amazed that we’ve gotten through this so far.  Kevin has been amazing throughout all of this.  He has accepted it with no anger or feeling sorry for himself.

I have accepted it too, though it’s broken my heart.  Early on when the doctors were testing for other diseases that, though terrible too, were not as bad as ALS, we prayed for a miracle that he would not have ALS.  But he did have it.  Some would say that my prayers were not answered and wonder if I was mad at God or had lost faith.  The answer is “no” because the miracles did happen and the blessings continue daily.

The biggest miracle is that we have been able to accept this challenge gracefully and even thankfully.  The miracles include the love and concern of so many people; their constant prayers, calls, cards, meals, visits, gifts, messages, cute posters left on the front door saying “we love you Kevin,” emails, an amazing neighbor who shoveled our 3 car driveway each time it snowed all winter (sometimes multiple times in a day,) a neighbor (with a broken foot) and his son who hung our Christmas lights (nice and straight the way I love them,) cute balloons, an amazing original oil portrait of Kevin and me, the continued love of Kevin's work friends, the friendship of Kevin's school buddies, the youth in our church ward doing yard work, cartons of Haagen Daaz ice cream when Kevin could eat it, priesthood blessings for both of us, wonderful supportive and kind medical people including the doctors and specialists at the U of U ALS clinic, sweet Kenya our cute friend who makes sure we get the room next to her desk at ALS clinic, the wonderful people at the MDA, the kind person that set up and continues to monitor Kevin’s bi-pap machine, the love of Violet Crawley, the Dowager Countess of Grantham from Downton Abbey, the friendship and support of all of our new friends who also have ALS and on and on the blessings continue.

I want you to know that though I am so sad that this disease has changed Kevin’s life, I am still happy.  I have the love and blessings of my dear Lord, the love of my sweet Kevin, the love of our children and family, the love of so many friends and my understanding of the Gospel of Jesus Christ.  Kevin is my eternal husband and my best buddy. 

Oooo Baby


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