The Waiting Game

We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. – E. M. Forster
Source: Brainy Quotes

Giving up the life you had planned is one of the hardest parts of having ALS. That is why I named my blog Altering Life Expectations (however I changed the spelling to have the initials ALS). There are lots of other reasons that people’s plans are changed. I don’t know what it would be like to be living with terminal cancer, for instance. And countless humans have had dreams shattered throughout history. 

For me, coming from a family with 3 other ALS patients in two generations, I am waiting for the proverbial shoe to drop, so to speak, because the other three had limb involvement. So far, mine is restricted to the Bulbar region – speaking, swallowing, and some diaphragm involvement. It is possible that it won’t spread to my limbs before my diaphragm and other breathing muscles give up. But it is also possible I could lose the use of my arms or legs. Now that I am sleeping longer since my bipap settings were increased, I am dreaming again. The other night I dreamed that I had trouble getting out of the pool (the way we did as kids – right up over the edge). The pools where I do aqua fitness have stairs or ramps, so this did not fit my reality, but perhaps dreams may be helping me get ready for whatever comes. However, I have also been eating and talking in dreams, too, so there is obviously a lot of memory involved in dreams. In the meantime, I will carry on waiting and doing what I can still do.

I am also waiting to start the new drug that was approved by the FDA in May, Radicava. It will be available in one week. We are waiting for insurance approval and a call from a health educator. I will need to have a PICC line inserted. It is hard to have it so close but not know when I can start. And there is no guarantee that it will work, but the chance of having my progression slowing down 30% is worth the chance, if it is affordable. We don’t know what our insurance company will decide to pay. So I wait.

My stepmom, Anita, had her birthday last week when all of us Macdonalds were out of town. This is a picture of her with her son Brian on her actual birthday.

photo by John Saunders

We were able to go out to celebrate with her one week after her birthday.

photo by John Saunders

Joe and Sheila Erlach joined us at Wild River. Sheila and Anita went to high school together. Joe and Sheila and their five kids are the people I stayed with when I first moved to Reno.

photo by John Saunders

I tried to get a photo of the birthday girl at the head of the table but I had not put the lens on correctly. My dad did get a photo of me when I was trying to get a photo.

photo by John Saunders

But here is the birthday girl with her beautiful new bicycle, in front of their beautiful new home.

photo from Anita Saunders

On Wednesday I went to lunch with two fun friends, Melissa and Sabine. It was fun and relaxing!

Photo by Melissa Knight

On Thursday, I walked with Andy to our neighbors across the street, with two intentions. Andy was selling car wash tickets for his cross country fundraiser and I also wanted him to meet Olivia and her mom because he loves kids and dogs and he is willing to babysit to earn money. Olivia is going into 4th grade and she is the sweetest girl. I know her from working at her school. She had a present for me. I was so touched. Her mom said she was going to ask when she could bring it over.  And they said dad’s car needs a wash.

Olivia made the flowers out of pinecones. I will treasure it.

Stan went to a rocket launch at Black Rock Desert Friday to Sunday. I opted to stay in Reno and get our cars washed at Andy’s fundraiser.

I do have a sore throat and that brings up the ALS Emergency Room and EMT Information sheet I carry in my purse.  All of us humans are waiting to die someday. My someday will probably be sooner than I was planning. It covers:

Shortness of breath – do not give oxygen for shortness of breath or low SpO2 unless I have another respiratory condition that requires it. I may need noninvasive positive pressure ventilation to expel CO2.

Oxygen may not help and may mask respiratory failure. My lungs are healthy, but my muscles, including my diaphragm are weak. I am using a Bipap at home so the settings should be the same, or ideally my Bipap from home should be used. If not using Bipap at home, a Bipap with a pressure of 12/6, backup rate of 10 with titration may help. 

Laying me on my back: It may be difficult for me because of the possibility of CO2 retention due to diaphragmatic weakness and aspiration due to poor ability to protect my airway. I may be able to lay on my back if using Bipap or non-invasive mechanical ventilation.

Avoid: Paralytic or general anthesthetics, narcotics or muscle relaxants unless absolutely necessary. If used, the ability to rapidly assist ventilation non-invasively should be available.

I have a gastronomy tube, please use that for administration of “oral” medications.

I am not able to speak at all, but I UNDERSTAND what you are saying.

Speak to me in a normal voice and ALLOW ME TIME to respond.

My caregivers and I are extremely knowledgeable about my condition, treatment needs and equipment. Please work with us.

In addition I have a written request for 

  • no morphine
  • antibiotics
  • nebulizer
  • bipap from home
  • no tracheotomy
  • no invasive ventilation.

All of these requests are to increase my chance of surviving Pneumonia or Flu.

And then to add some humor to my request, I read this today and it was so funny I want it on my advance directive!

My last wishes are to empty a whole jar of pop corn kernels in my feeding tube, so my cremation will be epic.

One thought on “The Waiting Game

  1. Thanks for your last sentence! Having a sense of humor makes life bearable- when all else fails. You are always in my thoughts & prayers. I remember you frozen in time as the little girl I was a nanny for a week in the summer of 1968.

    Liked by 1 person

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