Wednesday, March 29, 2006


The day a small piece in Jan's vascular system broke it was like Alice's fall in a hole that landed her in Wonderland. There, not everything is what it seems. Words could mean something or nothing, and any path you choose will take you nowhere if you don't know where you are going. Maddening, frustrating, surprising, and sometimes plainly clear. Jan has been in the Wonderland of her injured brain where she knows what she wants to say but the tongue, and the lips and the teeth will just not cooperate. In the same land, she knows how to move the right hand and her brain knows what the right hand is supposed to do to play a guitar, but the fingers and the wrist will just refuse to follow any commands and prefer to go on sleeping. Aaagghh! Never mind!

Today, the Speech Language Pathologist spent a long time with Louise, Donna and I, describing the forms of Aphasia that Jan has as a result of the Aneurysm. Aphasia is "the breakdown of receptive and/or expressive language functions", it is the result of trauma to the brain (in Jan's case from a genetic neurological disease). It afects, to varying degrees, a person's ability to:
* understand what is said (auditory comprehension)
*get the right words out. construct an accurate message (verbal expression)
*understand printed material (reading comprehension)
*spell and organize words into a sentence, or draw (written expression)
*do numerical computations (e.g. money matters, telling time, using the phone, scheduling)
*understand or use gestures.

To get out of that Wonderland Jan doesn't need to follow a white rabbit, instead she needs all kinds of rehabilitation therapies to rebuild the broken communication pathways between her brain and the various parts of her mouth. This is why her name is on the waiting lists of three rehab institutions in Toronto: one in Riverdale, one in downtown and one in the Weston/401 area. aS soon as a bed becomes available there, she will be transfered. This could happen at any time.

Given the fact that communication pathways are broken in Jan's brain, the first question for those who visit Jan often is: What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication.

Jan's progress is awesome by any standards. I can see the satisfaction on the face of the physicians when they come to see her. I see the encouragement n the nursing staff. I see the happy smiles from the support staff and the cheering from other fellow patients. Today, Jan expressed with a great deal of clarity her agreements and disagreements with the speech expert's methods. It was wonderful to see her filing her complaints in a logical and precise manner. Some words were missings, but the gaps did not stopped her from getting her message accross. Donna was an excellent "translator" when there was a breakdown. It was just amazing the level of conversation happening in her room for about an hour.

Consider this:
DAY 14 -Feb 24, in the ICU, Jan was unable to speak or sit, her communication was limited ot smiling and holding hands
DAY 18 -Feb 28, I found Jan sitting (slouched) in a chair for the first time. That day the Physio had her standing holding a table for a few minutes -she cried. Later in the day she was moved to a ward.
DAY 20 -March 2, Jan pulls out the NG, IV and catheter. 24-hour sitters are assigned to Jan. Her communication is still facial gestures and hand movements only.
DAY 21 -March 3, Jan starts moving her lips as if forming words but she can only produce small whispers.
DAY 23 -March 5, Jan types in a laptop: Hi and is without any tubes for the first time. Latter that day, she scribbled some words (Please, who) on the log book.
DAY 25 -March 7. Jan says "Hi", and "stop talking, Louise!". Jan is bale to go for Wheelchair rides.
DAY 28 -March 10, Jan is talking more: "I tried the orange juice -tastes awful!" then some garbled words...
DAY 35 -March 15, Jan walked for the first time with the help of a walker. Her speech continues to improve. Her swallowing is almost restored.
DAY 38 -March 18. Jan starts walking with only the help of a hand.
DAY 44 -March 24. Jan gets a weekend pass. Her speech is clearer. goes for a walk outdoors. She is very happy to be outdoors.
DAY 48 -March 28. She has a discussion with the Speech Pathologist...Some words are still missing but there us a dramatic improvement in the last 10 days.



Ret said...

Hi Jan!
Sorry I haven't written anything lately. I've stayed off the computer for the last couple days. One of my LiveJournal friends gave me a rather hurtful lecture about a ranty post so I deleted the whole thing. I've kind of been an emotional basket case this past week.
But enough about me. It's good to know that you are still making amazing progress. I think about you all the time and you are in my prayers every day. I miss being able to talk to you about these kinds of things because you were always a good source of encouragement. But for now it's your healing we need to keep praying about. I want to visit you again sometime soon, but part of it is not knowing where you'll be as you're awaiting a reply from the rehab places.
I'm glad things went well during your visit at home. WIll this be happening on a regular basis? How's your kittycat?
School has been great, I've been busy as a buzzy bee, but I have chosen not to update my journal for awhile. I kind of feel like letting the rest of the world think I've vanished off the face of the planet for awhile, at least for the time being.
Love, 'Ret

sharon said...

Hello Jan & Fede,

I look forward to helping Jan in anyway I can. ***Fede, you mentioned that more info would be provided in this blog via a link how: (I CANNOT FIND THIS LINK, CAN YOU PLEASE CLARIFY HOW I can find it) "What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication."

Jan, I thank God for the miracleous progress you have made of the last couple weeks. You are doing awesome more & more everyday.

It's been beautiful out lately. I remember how disciplined you were with your "mile" walks/run. I miss taking walks with you. But I look forward to making up for this gradually on a "mile" walk however you choose is the best method ie wheelchair, walker, a little walking at the hospital or rehab center with you.

God please continue to provide Jan with the grace to grow through her progress everyday and to know that every step she takes is greatly admired.

You continue to inspire me Jan.

I love you!

Paul from Oregon said...

Fede, be strong and stay well rested. The struggle is going to be a shared one between you and Jan in the months to come. This kind of work is very taxing on the caregiver, which I don't doubt you know by now. I wish you both great strength and the ability to persist at all times. And don't forget; tears are not a sign of weakness when you feel depleted and discouraged, they are simply a release of pent-up frustration. This will be a new life for you both in many ways and it will take immense strength from you both. If any two people can face this kind of challenge, I'm certain it is you and Jan.