Update

It has been a while since we have given you a ‘physical’ update of how Dawn is doing. I do not know why we have not done this more often. I know that for me personally one reason is it is simply one way I try to deny that things are getting worse. I know it does not make sense, but then few of my dysfunctions do.

Dawn’s ability to walk is gone. With strong help she can stand long enough to complete the necessary transfers through the day (bed to walker, walker to chair, chair to walker, walker to car, etc). If she is tired, as she often is, even this task is questionable and often involves two helpers.

Although Dawn gets all of her nourishment from her feeding tube, she does occasionally try to enjoy a couple spoonfuls of ice cream with chocolate. Increasingly, however, even this luxury has been taken away as she has not been able to swallow any of this as of late. In addition, the very act of spitting (getting out the ice cream when she can not swallow) is ineffective as very few muscles that enable the completion of this act are working.

We are finding that many of her neck and back muscles are significantly weaker as well. She experiences difficulty in sitting upright in her chair as these muscles no longer work effectively. Often when she reaches for something on the floor from this sitting position, she is unable to right herself. This morning she got ‘whiplash’ from the circle I made with her walker while she was in it. She was unable to straighten herself as her head lay behind her back.

When in bed she is unable to lift her head from her pillow or reposition herself as she has difficulty in even moving her foot high enough to place it on the pillow that on which her leg is resting. Someone else must administer any change of positions while in bed.

Her grip (hands) has weakened significantly that dropping things has become a regular event. Even when she is able to grip something (such as a plastic cup with tea) she experiences difficulty in lifting it. Her eyes also experience much tiredness when she reads a book or emails. This has decreased her time spent responding to emails. However, keep your emails coming. They are encouraging and supportive. Her daily strength enables her to be up out of bed for a total of perhaps 6 hours on a normal day. Any more than this will be extracted in extra necessary rest in the 2-3 days that follow.

We thank you for your continued prayers and support given in so many ways. We have been encouraged through your love and care.