Marianne Has ALS

On September 11th I had my third clinic visit. Clinic in general is a mixed bag on one hand people who go to clinic tend to have better quality of life, it’s also where you learn that you’re closer to death.

I’ve asked my doctor to not tell me what phase I’m in or if I’m progressing quickly or slowly, I don’t want to know. I don’t want fear to eat up my last years or months of life. Want to live each day present and thankful for the life I have.

Unto the update:

The respiratory therapist said my numbers look the same as they did at my first clinic.

While my speech has slowed and is sometimes slurred the speech pathologist said I was still intelligible and therefore did not need to look into other methods of communication.

We reviewed strategies to prevent choking.

The physical and occupational therapist don’t often show me particulars on what to do with my body, they assist me and maintaining activity – they help me to find accessible ways to do everyday things. This clinic we focused on travel and what I will do come winter.

The nutritionist was happy with my Yolo diet. I have maintained my weight.

Physically there have been some obvious declines, I can no longer walk without an assistant and my arms and hands have continued to decline in strength.

Mentally, I’m ok. I have highs and lows – I miss the old me. The new me won’t let ALS stop me from living. I feel the more love and support than I have ever felt in my life. I have been blessed with Jacob, Jacob’s generous family, a renewed connection within my own family, a renewed relationship with God, true friends / new friends, and the comfort of strangers / friends from our local LDS church.

I have lost so much and yet my life is so full.