Dear Friends,

Grant is definitely changing. Since the last message, he has said and done so many new

things I'm afraid I won't be able to remember them all.

First, he continues to speak and say surprising
things. For example, when we put on the Passy-Muir (speaking)
valve and asked him to just warm up his voice and make any old sound,
he came out with "Testing 1, 2, 3". We laughed and laughed. How cute is
that? He has said "I'm sorry I'm not myself" and "You are my lifeline"
and "My legs feel virtual, not real" and "I sometimes feel my life is not worth living"

and "It's good to see you, even if it's only your  outline."

For the years he was apparently "out of it", I continued to talk to him
and tell him what was going on, but I was never sure he was getting
any of it. For example, one of my projects last fall had been to purchase
a mobile home in Florida for my Mom. I'd been telling him all
about it as the plans moved forward. On December 6, the day before
he first started talking, I had just returned from a trip to Florida
to close the deal. One of the first things he said to me on Dec 7
was "Did you buy a trailer?" I was astounded he was so completely oriented and up-

to-date.

My uncle Bernie told me the following joke when I was in Florida. A frugal
pastor is painting the church. He buys what he thinks is enough paint, but runs out
sooner than he expected, so he puts paint thinner in the remaining paint,
and continues the job. The paint supply is still getting lower and lower,
though, so he thins it some more. But the job is  looking worse and worse, so the
pastor decides to ask the Lord what to do. The Lord says "Repaint and thin no more."
I told this joke to Grant, who said he thought it was very funny. A couple of days later I

asked him if he remembered the joke I had told him about the pastor painting the church.

He nodded. I asked, "What did God say?" He answered immediately (using his voice,

mind you), "Thin no more." So we have started telling this joke to people as a team.
I tell the first part and Grant plays God and says the punch line. He has always enjoyed

making people laugh, as you know!

This reminds me, I am going back to Florida Jan 7 – 17 to get the place ready for my Mom.

If you are thinking of visiting Grant, that would be a good time to go. Grant has been pretty

consistently awake for the last couple of weeks. The nurses are happy to put in the speaking

valve, since the more he uses it, the better.

It takes Grant an  extraordinary amount of effort to speak, so he can't do it for long - an hour

tops, and then he starts to get more and more unintelligible. He says speaking feels to him like

shouting at the top of his voice - that's the amount of exercise
it feels like to push air through the valve. But the more he does it, the more he develops his lung

capacity and hopefully, the easier it will get. The doctor is also talking about possibly using a

thinner trach tube, which would concentrate the air more and make talking less effort. As I have

seen now at CM often, the move to progressively smaller trach tubes is also the preparation for

removing the trach altogether and allowing the hole to heal. This opens to door not only to normal

speech, but normal eating. Grant
has not eaten regular food in almost four years. I dare not think too far ahead here.

It is very frustrating for Grant when he starts to get unintelligible. He says he is still  thinking just as

fast, but he is less and less able to say anything because of fatigue.

It's not all good news. His talking has revealed some disturbing things. He says
he cannot see. This explains why he has stopped watching TV or wanting to
read. He can't see photos in front of his face, and moving them to different distances does not help.

He says colors are washed out, and light bothers him. He cannot tell you how many fingers you are

holding up and when you ask him to make eye contact, he generally looks only in your general

direction, but you don't get the sense he really knows where your eyes are. He is going to have a

complete ophthalmic exam this week. He has been on many heavy-duty systemic antibiotics that

have bad side effects on eyes, so I am worried. As Dr. Miner put it, "He doesn't need another disability."

He says he is depressed. He has a sad face much of the time. He can smile, but the smile is just face 

movements. It's rarely a real smile. I asked him if he ever feels cheerful and
happy and he said no. He described his view of his future as "Bleak." His anti-depressants were recently

discontinued, but they have now been restarted. He says he doesn't feel any difference yet, though. He

does not want to talk to any kind of counselor, and his views about religion have not changed in the least,

either. He is like Teflon when it comes to religious arguments. He just doesn't "get" anything appealing there.

(His Teflon is much thicker than mine.)

A third new and worrisome piece of info we've gotten from his talking is that he cannot feel his lower body.

He used to be able to. Now he cannot tell whether or not you are touching him anywhere below his hips.

But there is more good news, too. He is on only 40% of the full dose of the Baclofen, and we are starting to

see some significant improvements in his voluntary movement. It's hard  to tell exactly what he can do, because

he is weak as a kitten from being in bed all this time. But he is moving both arms, elbows, wrists, and fingers on

both hands. His fingers are all gnarled up from joint damage, but he might eventually move all his fingers normally

if the joint damage can be undone. Stretching and moving are very hard for him, but physical therapists are

unstoppable. They are making him bend his arms and raise his hands to his mouth – the movements he needs

for eating. This kind of work was unthinkable a month ago.

Furthermore, although he cannot feel his legs, he seems sometimes to be able to move his right knee up and

down on command. The nerves for sensation and movement are different, and you can have damage to one

group without damage to the other. For most of his illness, he has been able to feel his legs but not move them;

now things seem reversed, and he can move (sometimes) but not feel. He  is moving his right leg just enough to

make me far too hopeful!

If he can keep up this arm and leg movement, and get stronger, he might become able to reposition himself in the

bed, and then we won't have to worry about bedsores – and eventually, (oh, joy!) we might be able to sleep in the

same bed.

He has also started to wink!

Love,
Sandy