October 13, 2009

Complaints about the infrequency of my updates on Rand are once again filling my email box! My apologies for being so lax about keeping you informed. Rand continues to be my top priority and the rest of my time is spent running errands, taking care of the house, doing all those things both of us used to do. Time slips away so quickly.

In the last chapter, Rand was being tested for possible seizures, which occurred intermittently. The neurologist found no evidence of seizures now or in the past. Whoopie!! He has no idea what occurs and Rand has not had an episode since the one on July 4. If he should have another one, the neurologist has flagged his medical record to indicated that an EEG be done immediately. We’re keeping our fingers crossed.

Rand’s use of Max, the speech-generating device, has come to a screeching halt. After he stopped seeing the speech pathologist, he also stopped using Max and it has been sitting idle in his room since August. He is not willing to give it up, to use it or to donate it just yet, so it collects dust. I hope he will make a decision soon as the technology is getting older as we speak. I don’t want to force the issue but it needs to be resolved. The speech pathologist said that there is no point in Rand continuing with her services as, once again, she is not seeing any progress. She said that his brain is like Swiss cheese and it will never recover. Yet, I can see/hear improvement in his speech – it is slow, uneven, halting, but always improving. Others who have not seen or talked to him for some time also note improvements. I guess it will be for us to encourage and celebrate his progress, as the professionals have to devote their time to those who will benefit most. For instance, Rand had swallowing lessons several times daily for seven months after his stroke and before he could eat again. That issue alone made it possible for him to leave the hospital and live in assisted living.

The big news is that Rand can now walk on his own!! He will always need his quad cane, but he no longer needs Thuan or me holding on to him and no longer needs to wear a gait belt. He can get up from his recliner (which pushes him up into a near standing position) and take off across the room and down the hall! I never thought I’d see the day! I still hover around him, ready to steady him or catch him if he stumbles, but he walks well with good balance and a steady stride. He hasn’t walked outside yet as the sidewalks pose too many hazards – but that will come. It has taken three and a half years for him to get to this point, with therapy every day. I bet the next “step” is not that far away!

Rand’s Adapted Bowling sessions started again last month. It is so fun to watch Thuan, who had never seen a bowling alley before, compete against Rand. They have a great time together and I am the go-fer, ball girl, cheerleader, coach and driver. Think of Rand every Tuesday at 3:30 p.m. PST, as he and Thuan are bowling, hooting, laughing and high-fiving each other!

Earlier in this blog, I mentioned Rand’s physical therapy sessions. Below are some photos of him as he goes through the paces. His legs are tied together just above his knees with a strong plastic band and he has to kick sideways, backward and at an angle 100 times on each leg. Then he has to walk the length of the parallel bars ten times each way. All of this is after he has walked the long course at the PT facility. You can see the determination on his face, the orange band around his legs as well as the struggle he has to complete the session. But he has never given up, never complained, has endured the pain for over three years. The photos are self explanatory and do not need captions.







Keep Rand close to your hearts and in your thoughts. He is remarkable.

Love,
Connie

July 13, 2009

Captain America Update.

This update on Rand is so long over due that I am getting complaints from friends and family! In the last entry I had just found out that Rand’s left artery was completely blocked so vascular surgery is out of the question. After discussing the situation with his doctor, the decision is to keep a close eye on the other artery and see what the rate of build up is. That will decide the next steps.

Late last fall, Rand started having “episodes” now and again. I was afraid that they were TIAs or mini-strokes. They have become more frequent (about twice a month) and the neurologist told me to call 911 whenever Rand had one. Just as we were sitting down for dinner on July 4, Captain America had another episode. We spent the next eight hours in ER where he had a CAT scan and an EKG. Both tests showed that he is not having TIAs, thank goodness, but they suspect he is having seizures. He will have an EEG this afternoon to help determine what is going on. I don’t know when we will get the results, but the doctor said that they might not give him meds to control the seizures because the side effects are so tough and he is already taking so many meds, that they are reluctant to add more. I will keep you informed via this blog. Keep your fingers crossed that it is something that is easy to control.

Rand is once again having speech therapy every week. The therapist is focusing on the speech-generating device (Max, son of Mo) that we got about a year ago. During the almost yearlong process of writing the grant, having it lost, rewriting, etc, Rand’s speech needs changed a lot. By the time Max arrived, Rand had moved beyond it in some ways and in some ways Max was beyond Rand’s ability to use effectively. For instance, it is critical that Rand be able to read and write, at least on a basic level, to use Max. He cannot do either one so Max’s strengths remain untapped. The speech therapy will continue into mid-August. If there is little or no progress with Max, then the therapist has suggested that we donate it to someone who can make good use of it. I had such high hopes for this device, but as the therapist said, Rand’s brain is now like Swiss cheese - there are holes and gaps everywhere,

We have been so busy the last few months but I can’t tell you what we have been doing! The Adapted Golf program that Rand attended went by the wayside when the sponsoring hospital was closed. Rand did participate in the Saving Strokes golf event in May. There may be another golf series starting next spring but that is a wait-and-see proposition. The Adapted Bowling series is on hiatus for the summer as is Recovering Function. His music therapy continues every week and he is doing well. Nonetheless, we seem to be on the go all the time. Captain America is doing wonderful things in physical therapy. His walking improves every session – he is walking very straight and tall, with a good, smooth gait and improved timing. Now he prefers to walk around our house using his quad-cane rather than using his wheelchair. He never ceases to amaze me.


Two weeks ago today I returned from a month in Italy and the Eastern Mediterranean. What a wonderful trip! My sister and I and two friends spent a week in Rome, then cruised to Croatia, Greece, some of the Greek islands, and Turkey. A friend and I went on to Milan for a few days before returning home. My cousin, his wife and family lived in our house during that time and really saw the Bay Area. It was great to have them here, keeping an eye on Rand and on the house. Rand is happy to have me home!

Love,
Connie

P.S. It is later in the day and the EEG went well. The technician said that she saw no traces of seizures, no evidence that there have been any! WHOOPEE!! We'll get the final report from the neurologist in the next couple of days. I'll keep you posted.

March 31, 2009

Yesterday the neurologist informed me that the CT scan last week showed that Rand’s left carotid artery is completely blocked – not even a trickle of blood is getting through to the brain on that side. Consequently, vascular surgery to clear out that artery is not feasible. In two weeks I will meet with the doctor and find out the implications and options for Rand as a result of that test. I will post a summary of that meeting on this blog. I am not going to discuss the results of the scan with Rand as he has already forgotten about it.

This afternoon we are off to adapted bowling and life goes on.

Keep Rand close.

Love,
Connie

March 24, 2009

Rand celebrating his February birthday.

Recently, during physical therapy at the hospital, Rand suffered a TIA, which is a precursor to a stroke, and he spent several hours in ER. As a result, the neurologist ordered an ultra sound of his carotid arteries. Today we met with the neurologist to discuss the results. The ultra sound showed that the left carotid artery is totally blocked and supplies no blood to Rand's brain. The doctor told us that the ultra sound is not completely accurate and reliable so he has ordered a CTV scan with an iodine contrast which Rand will have this Friday morning. He said that if the CT scan shows that the artery is really totally blocked there is nothing they can do, but if there is even a trickle of blood getting through that artery, then they have some options. The first and foremost option is surgery to clean out/roto-router the artery. That is a dangerous surgery because a piece of plaque in the artery can be easily jarred loose, travel to the brain or other major organs and be fatal. There are other procedures as well, but the doctor didn't discuss them with us. About a week or ten days after the CT scan we will meet with the neurologist again and hear those results. We will then either say good bye to him or be sent on to a vascular surgeon for a consultation and some decision making.

The other day I was telling Rand about the tests that were coming up and that he had gone through similar ones about three years ago. At that time the doctors did not recommend vascular surgery because he was so weak that they did not feel he could survive the operation. When I told him that there might be a similar discussion this time, Rand said, "NO! NO!! NO!!!" After the appointment today, we went out for lunch and I told him again about the procedure on Friday and the options that the results would produce. He listened carefully, had a pained, anxious look on his face but did not say anything.

The neurologist examined Rand and was pleased with what he could do, very interested in what deficits he has and how his processing works. Rand could tell the doctor his name but not mine. He did know that I was not his mother or sister and laughed at both suggestions. When the word "wife" came up he said Yes. Not too long ago he didn't understand the difference between the terms and confused the roles when questioned. When asked to hold up three fingers and point them at the ceiling, he struggled and looked at me to confirm that he was doing the right things, that he had figured out three fingers and the location of the ceiling. After a hesitant and shaky start, he managed to follow the directions correctly and was very proud of himself, emphatically pointing at the ceiling much longer than necessary.

The neurologist also made a referral to the Speech Pathology Dept. It will be interesting to see if they will continue to provide services to Rand after all this time.

He made some comments about quality of life and said that he fully expected Rand's life span to be another 15 to 20 years.

This has been a long, tiring day, filled with anxiety and the unknown. Rand was so tired after lunch that he decided not to go bowling which was fine with me! To top it all off, this afternoon I got a call from the cruise line about our celebratory Mexican Riviera Cruise in April, 2010. The company has canceled all cruises to Mexico and added trips in the Caribbean instead. Uff da. I am back to the drawing board. Oh, well, it gives me something else to think about, look forward to and to keep me out of trouble.

I will keep you posted on the next steps. Please keep Rand close to your hearts and in your thoughts and prayers. It is an anxious time.

Love,
Connie

Three Years Later

January 28, 2009

It was three years ago this morning that Rand’s and my lives changed forever. Rand shakes his head in wonder and I still get knots in my stomach when we talk about that day. An ambulance siren sends shivers down my spine as I think of the next family who may never be the same again.

Yesterday Rand’s doctor also shook his head in wonder as we talked about his amazing progress – the predictions about Rand’s quality of life three years ago are so antiquated as to be unbelievable. Unbeknownst to us, the doctor watches Rand walk around the medical buildings with the therapist and is stunned by what he can do. Last week, I told Rand some of the stories about the first weeks, then months and now years following his devastating stroke. He does not remember most of it, but interestingly enough, he does remember some of the lowest points.

As well as he is doing, Rand has been sidelined by an upper respiratory infection for the last few weeks. The violent coughing has caused some bruising and pulled muscles around his ribs but he is well on the road to recovery now. In fact, we went out for dinner last night because he felt so good. He was getting cabin fever from being cooped up in his room all this time. The infection has sapped his strength and taken all of his energy. His physical stamina is weakened and it will take time to build back up to where he was. As usual, his attitude is great; he works hard and is his usual cheerful self.

My trip to Antarctica was stunning, powerful, arduous, fabulous, wonderful, funny – words and pictures cannot do it justice, although I have over 600 photographs if you want to see them! I can’t recommend the trip put together by Abercrombie and Kent highly enough.

We have settled back into our normal routine. Some relatives will visit us during February and we are looking forward to that.

This update contains a recent picture of Captain America – he’s as handsome as ever! Please keep him in your thoughts and prayers. Stop by for a visit when you can – he loves company. Send an email or card to me and I will pass it on to Rand.

Keep Rand close.

Love,
Connie