back                                                                                                                     Updated Monday October 18, 2004

Medical Update

Mon Oct 18

    by Joe

 Valerie continues to weaken daily.  She is now having fairly severe problems swallowing (dysphagia)  and inhales food and liquids (aspiration) at every meal. Basically her swallowing reflex is so slow and weak she cannot finish swallowing a bite before she has to take a breath. The same nerve that is responsible for swallowing also controls lung function, so she has such a weak cough that it is very difficult for her to expell the food from her trachea.

She is also rapidly losing strength in her arms and legs, and small routine thigs like brushing her teeth or setting the brakes on the wheelchair are getting very difficult for her. That probably comes from the pinched spinal cord nerves. She has for months complained about her "lava leg" that felt sort of hot/cold/electric. Now it only feels cold to her, and more and more frequently it actually *is* cold, indicating that her circulation is failing.

The tumor used to impact only the 5th cranial nerve. It has grown so much it is now affecting cranial nerves 4 through 10. Click on this link to go to a diagram of cranial nerves and the areas of the face and head that they control. But I will briefly give a list here of her symptoms and the associated cranial nerve.

 
SYMPTOM

Vision images rotated out of plane
Numb face, tongue, & mouth;  weak bite
Double vision (divergent)
Palsey of face; numb anterior tongue
Lack of balance and equililbrium - cannot stand or walk
Numb posterior tongue
Weak swallowing, and lung function;
      poor epiglottis functioning;  poor circulation

 

 CRANIAL NERVE

  IV - Trochlear
   V - Trigeminal
  VI - Abducens
VII - Facial
VIII - Auditory
   IX - Glossophyaryngeal
    X - Vagus
  

Every symptom she listed in the September 5th update has gotten significantly worse; areas that tingled or were slightly numb are now totally numb and some sre palsied (paralysed); areas that  were on one side of the body are now bilateral. She cannot lift anything with any weight to it - a plate or an article of clothing is about all she can manage.

Nighttime and early morning seem to be a very low time for Val. She cannot talk intelligibly at all, and has almost no strength at all in her legs. In the two weeks since she fell, my steadying her to the bathroom at 2 or 3 AM has gone from holding her hands, to her elbows, to under her arms. This morning her legs gave way completely and I essentially carried her to the bathroom. From now on we will have to use the bedside commode.   Several days now she has reported that she has experienced a spasm of her throat and lungs at 2 or 3 AM that keep her from breathing for 20 or 30 seconds.
Mentally and spiritually she is more than ready to move on, to "fly free" as she puts it.  Emotionally she is having a little more difficulty since many (most) of us around her cannot always hold back our tears, and she wants to stay for us. She is always caring for others; even now she makes jokes to help others laugh when they are crying.  But overall she is becoming more detached - sleeping  longer in the mornings and after lunch, and refusing visits and phone calls more often.

She is still extraordinary, inviting others into the process of her dying, and fighting to stay acutely aware of all that is going on both without and within her self.

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