Christmas, 2007

Merry Christmas, Happy Holidays and Happy New Year from us to you. This year has been amazing, filled with progress, challenges, new toys, frustrations, sadness, joy, visits from family and good friends from near and far. I won't go in to all of them as you can review the year's entries on this blog, but I am including some photographic highlights of 2007.


Last spring we started the months-long process of getting a speech generating device for Rand. It is still a work in progress but we are making headway. Love the bureaucracy of managed care! Uff da!


Rand can now walk for about 15 minutes with safety precautions in place but with minimal assistance. Here he is walking, in early December, with help from two therapists. He is not wearing his leg brace and is using a regular cane rather than the quad-point cane. He leans heavily on the cane but his sense of balance is good.


Rand continues to be a demonstration patient for the "Recovering Function" course, which is part of the national certification process for physical and occupational therapists. In this photo a candidate is working on his right shoulder. Notice that his hand is "paddled" to keep his hand and fingers from curling up. He is their star student!


Rand relearned to hit golf balls in the "Saving Strokes" program. The first session he hit very few balls as his balance and stamina were so poor. By the 8th session he was hitting golf balls like mad - his stamina and balance were awesome. Thuan's support was dangerous but critical!


Rand and friends break in one of the eight new "Rand Elness Honorary Handicapped Curbs" on Antigua Drive. Notice the champagne glasses - some of which was used to christen each new ramp! It is so wonderful to have those ramps, especially with the new power wheelchair, Rand can go zooming where ever he wants!


Rand had so many visitors this year - friends from Illinois and various parts of California, Connie's cousins from Norway, his brother from Minnesota, his sister and her husband from Wisconsin, and at Thanksgiving, our niece and her husband, also from Madison, WI. This photo is of Kiki and Michael with Rand and me during a Thanksgiving weekend visit to a local winery.


Last Christmas, my sister Annie and I went on a wonderful cruise to the Mexican Riviera with friends. She will be coming here for Christmas again this month. She and I also spent a week together in Puerto Vallarta, Mexico, in June. I'm not including photos of our hair braiding expedition, the jet ski escapade, or other adventures during those fun times! I also spent a week in Hawaii with my cousin and his wife and ten days in Minnesota visiting friends and family.


Another major highlight of 2007 was buying three new vehicles: a handicap-converted mini-van with automatic ramp for Rand, the electric wheelchair "hot rod" to give him some more independence, plus a bright red Toyota Prius mainly for me. Rand is so good at maneuvering the new wheelchair - he never ceases to amaze me!


Rand and I celebrated our 44th wedding anniversary in August - what a journey it has been. The highs have been fabulous, the lows devastating. As 2007 marched by, we had great joys, unexpected accomplishments and tearful depressions. Next month it will be two years since Rand's stroke and the two of us are still struggling with the realities of it all. Rand's progress in that time has been nothing short of miraculous and we celebrate that every day, yet every day we also have to deal the limitations, frustrations and memories of times past. But who knows - maybe we'll dance on our 45th anniversary!

Thank you for being there for us during another year. We truly appreciate your cards, calls, visits and good thoughts.

We wish you all the good things for the holidays and in 2008 -
HOPE, PEACE and COOKIES!

Love,
Rand and Connie

A Huge Whoopie!!

For the last 1 1/2 years I have had a two car garage with one car in residence. As of yesterday, every time I open the garage door I am shocked to see it filled to the brim with two vehicles. Not only did I pick up Rand's electric wheelchair yesterday, I also brought home the handicapped conversion Chevy minivan. On top of that, the previous week I bought a bright red Toyota Prius for myself. Yikes! Remind me to NEVER, EVER again buy three vehicles in the same week - reading and digesting the manuals alone will kill you! Rand's electric wheelchair is stored in the garage at his house and I have yet to pick up the passenger's seat for the minivan and store it in our garage. Uff da. I see more garage cleaning ahead.

Below are photos of Rand's maiden voyage today in the minivan, "Opplevelse 2", also using his "hot rod" (electric wheelchair) for the first time. What a challenge it was for him but he rose to the occasion and did a stellar job! With Manny's support and guidance, he learned to back his electric wheelchair up the ramp and into the far corner of the minivan. Then he learned to pull forward, making a sharp left turn into the passenger's seat area, positioning himself precisely until the chair "clanged" into the lock position on the power lock mechanism installed on the floor. The power lock clamps onto a rod on the bottom of his wheelchair and holds him tightly in place. When we arrive at our destination, I push a button and Rand has about 3-4 seconds to back up when the lock releases with another "clang" and then start the process in reverse, backing into the corner and going down the ramp facing forward. I was really worried about Rand making this work, but with some practice, he did beautifully! Positioning himself exactly for the power lock to kick in is the problem right now, but Rand will learn to do it precisely, exactly and every time. After three practice runs this afternoon, Rand and I took off for the mall. He negotiated the aisles at Target, the corridors of the mall which were filled with families, strollers, toddlers, oblivious teenagers, walkers and wheelchairs, like a pro! I thought it would be best if I walked on his right side to deflect his running into/over people and things. After he ran that 300 pound electric wheelchair over my foot once, I changed my mind! Actually, on a busy day like today, it worked best for me to walk ahead of him and clear the way - to cut a swath through the crowd for him. When we got home, he was bushed - mentally exhausted from all the concentration, commotion, learning, independence as well as the effort required to negotiate the aisles, being assaulted by all the products, colors, sights, sounds, smells, people, all the things not contained in his normal cocooned world. I also learned that I need to get a bike flag for his chair so I can spot him - he tends to lose concentration, he stops in the most unlikely places and it is easy to lose him in a store or a crowd. We're learning.

All in all, I can't tell you what a relief it was today to not have to transfer Rand from wheelchair to car and back again, over and over. To not have to sling that wheelchair in and out of the back of the SUV was such a blessing. Actually, I think Rand misses it. With the old method, every time he stood up for a transfer, he gave me lots of hugs and kisses - now that he is sitting down and it doesn't work so well! Oh well, we can fix that, too. Practice, practice, practice!

Rand and Manny getting ready to assault the minivan, "Opplevelse 2", with his new hot rod.

Backing into "Oppie 2" with Manny's guidance. Manny's attempt to push the hot rod is futile as Rand controls it totally. The door opens and the ramp lowers automatically as Oppie 2 "kneels" to make it closer to the ground.

More practice backing up the ramp. It turns out that that was the easy part! I'm going to put red duct tape on the left edge of the ramp to make it easier for Rand to see/use that as a guide. I'll also add red tape to the power lock and to the dashboard to give him some targets to help align the wheelchair exactly.

Rand positioned in the far corner/side of the minivan, ready to negotiate the sharp turn into the passenger's area. His knees are strapped together with a wide velcro strap as his right leg flops to the side and there is nothing on the chair to hold it in place. There is danger of his leg and/or pant leg getting caught in the front wheel. He is wearing the arm sling as the armrests are so short that there is nothing to prop up that arm and it would dangle uselessly, dangerously and heavily at his side.

Success!! Randbo is in place, the lock is holding him securely and he's ready for an opplevelse!!

The minivan floor is lowered ten inches to accommodate the ramp, wheelchair and extra headroom that is needed. The driver's seat is sitting up on a platform so Rand and I are the same height, just as we would be in a regular car.

Whew - this has been a busy and intense two weeks, filled with so many uncertainties, lots of "hurry up and wait," questions upon questions, anxiety, nerves, frustration, financial headaches and finally the reality of Rand making it all work. WHOOPIE!!

Keep Rand close - a few months ago this day would not have been possible. Thanks so much for sticking with us on this amazing journey. The progress continues.

Love,
Connie

Woes and Whoopies

WOE: If Halloween doesn't hurry up and get here, I will have eaten all the "Gummy Body Parts" that I bought for the trick or treaters on Halloween! Uff da.

WHOOPIE: Rand is doing well in the weight department, turning down sweets right and left. He hasn't lost any weight but he hasn't put any on in the last six months either.

WOE: Today I called the Durable Medical Equipment Department of Kaiser to find out the status of Rand's speech generating device. They'd never heard of it! Six weeks or more ago, his doctor signed it off and sent it on electronically. It got lost in cyberspace. !@#$%^&*()! It has now been retrieved and is on its way to the Regional Review Committee who will decide if it is "appropriate" for Rand or not - six months late!!

I can't find a Whoopie in that mess!

WHOOPIE: Last week I sent out pictures of Rand driving a rented electric wheelchair - a trial run. He did so well that today I bought one for him! It will be here at the end of next week. It is bright blue with beige upholstery to match the interior of the new minivan that I bought on Wednesday! To see the minivan conversion (floor lowered by 10 inches, electric ramp and doors, passenger seat removed and a power wheelchair locking system in place, kneeling feature, etc.) go to www.braunmobility.com To see Rand's new hot rod, go to www.pridemobility.com and look up the "Jazzy 600." The unconverted minivan can be found on www.chevrolet.com under "Uplander." By Halloween, Rand and I should be cruising all over the place with new found freedom! At some point I will probably sell the Murano and get a small run around car for myself.

WOE: None really, but $$$$ keep my head spinning!

WHOOPIE: My baby sister, Annie, had two stints put in her heart two weeks ago. Two of the three arteries were totally clogged, so bad that the surgeon had a hard time getting the stints into the arteries! The surgeon said she was one lucky lady to have that major problem discovered when she did, through a routine stress test. There are five members of my immediate family and four of them share 13 heart bypasses and/or stints. Yikes! I have a stress test scheduled for next week.

WOE: Hmmmmmmmm - I can't think of any more. Life is good.

Rand is doing so well in the next round of Saving Stokes golf lessons! He's hitting a five iron out there, straight, with a nice loft. Pretty, pretty shots - not long but pretty. Thuan has found the perfect crouching position to keep Rand in place yet allowing his body to move with his swing. By the last lesson, Rand should be driving himself to the tee in his new chair!! Pictures of the new vehicles will be included in the next epistle.

Keep Rand close.

Love,
Connie

October 11, 2007

For several months I have been looking for an electric wheelchair for Rand with the idea that we would then get a minivan converted for handicapped use and my days of slinging a wheelchair in and out of the SUV would be over while I was still in one piece.  I knew that Rand could not operate a traditional electric wheelchair due to his limited spatial awareness, 50% blindness in both eyes, inability to attend to a task, to focus and to be aware of safety issues.  My wheelchair search focused on one with "attendant controls", in other words, one with controls in the back of the chair that another person or I could operate.  To make a long search story short, the only ones available are special order versions that cost in the $10,000 range!  Out of sheer frustration last week, I started talking to myself about who on earth the expert was that said Rand couldn't handle a traditional electric wheelchair.  It was me.  And what do I know?  The answer is NOTHING!  So today I went to a store and rented a regular electric wheelchair for Rand for a week to see how it would work.  Guess what??  

RAND CAN DRIVE!   RAND CAN OPERATE AN ELECTRIC WHEELCHAIR WITH EASE AND A GREAT DEAL OF SAFETY!!  HE'S GOOD!   HE LIKES IT!!  WHOOOOOPIE!!!  AND HERE'S PROOF!!


Out cruising the street


A stop at a friend's house


Catching up on the news at home - the wheelchair fits his room space perfectly!

I am so thrilled!! We practiced inside the house for awhile first and then took it out on Antigua Drive. Rand navigated like a pro. He went up and down the ramp, over obstacles on the sidewalk, around things, out on the street, learned how to regulate the speed and even how to use the weenie horn! I think he even surprised himself! He was amazed at how easily this chair goes over bumps, thresholds, and other things that make a regular wheelchair quake. I am ashamed of myself for doubting Rand's current abilities. On the other hand, it wasn't that long ago that my assessment was right, but he has come a long way in the last couple of months and I just hadn't understood how much progress he has made. I think we are home free and well on our way to being more independent. Just think, last Tuesday for the Saving Strokes golf program, I had to transfer Rand eight times in two hours. With this set up that number would be zero! That saves Rand a lot of grief and saves me a lot of wear and tear on my back and shoulders.

This is not the chair we will end up with. This chair is a rental, it is too low for him, and we need one that is a perfect fit - and has a decent horn! His arm rest doesn't work on this chair so we have to address that issue also. But there is a lot to like about this chair brand and it will take more research to find just the right combination for Rand. I hope I can accomplish that in short order and then we can move on to the minivan search. The next big decision is whether we buy new or used vehicles. There are pros and cons both ways.

Stay tuned - this is a huge milestone for Rand. I truly never thought I would see this day. I'm so happy I could cry!!

Keep Rand close.

Love,
Connie

October 1, 2007

As we slide into fall and Christmas decorations abound, it is time for another update on Rand. All is well and he is as busy as ever. He has occupational and physical therapy twice a month now, as an out-patient at the hospital, down from once a week. I suspect that may end totally before the year is out as he has plateaued physically and Medicare isn't seeing the progress they want in order to keep the therapy going. As I understand it, PT and OT usually continue for six months or so and Rand has had nineteen months, plus the intensive month in Vallejo over a year ago. That tells you something about the tremendous progress he has made. Thuan sees him six days a week as usual, which keeps him limber, active and moving ahead. His new articulated leg/foot brace has also had an impact as he can now bend his right knee and ankle - a real plus when trying to walk.

Rand completed the "Saving Strokes" golf clinic two weeks ago and made so much progress in balance, confidence, accuracy and stamina. Lo and behold, he has been accepted into the program again and starts the next round on October 9, every week for four weeks! He grinned from ear to ear when I told him today! However, I haven't told Thuan yet - I hope he is as enthusiastic! Uff da.

Rand's blood thinning meds continue to be monitored every two weeks and adjusted as necessary. His blood thickness never stays constant - it fluctuates all the time and is hard to pin down. I keep hoping that they will find the magic formula and it will stabilize. Three weeks ago Rand had an nasty neurological episode when we were at the hospital, about to go in for a blood draw. He has these bouts often but not as tough and hard as this one was. He was nauseated, had chills and was gripped in pain. A "Code 44" went out over the speaker system and within seconds Rand was surrounded by nurses, technicians, LVNs, even security! He was embarrassed as the event had passed by that time. He saw the doctor, was declared fit as a fiddle and we went home. Whew!

His wonderful attitude and contentment continue to be a comfort to both of us. I don't know what I would do if he became unhappy and disillusioned with his situation. I still haven't given up on the idea that he may be able to come home to live some day, but in my brain I know that won't happen. In my heart I keep hoping that he will continue to recover sufficiently to make that a possibility.

Last night I returned from a ten day trip to Minnesota with stops in Fargo, North Dakota; my hometown of Owatonna, and in Minneapolis. I also took a day trip to see one of my college roommates whom I haven't seen in 35 years. What a joy that was! We talked like we hadn't seen each other since last week! I also saw two more of my college roomies and a bunch of my high school friends - some of whom I haven't seen in well over 40 years! Wheeeee! I wouldn't have missed that "girl's only" luncheon in Minneapolis for the world! What a great time we had. I also had a good time with my sister, aunt and uncle and made some goodly contributions to the Minnesota economy. Rand understood that he would have been bored to tears on this "girl's trip" so he was very happy to let me go alone. It was a grand adventure for me and I got a glorious welcome home today.

The next big project is to find an electric wheelchair for Rand with the controls in the back for me. So far I haven't had any luck. It looks like I might have to buy a regular electric wheelchair and have the controls moved/modified. Rand can not operate an electric chair safely as his vision, perception, danger zone sensibilities no longer function properly. He would be a danger to himself and others in a chair like that. I am coming to grips with the fact that I can't keep slinging that transport chair in and out of the back of the SUV without endangering myself. Even pushing Rand in his standard chair up and down ramps is becoming a real challenge for me as the whole package weighs about 300 pounds. So far, the best solution as I see it, is to get a minivan, modified with a ramp, kneeling capacity, lowered floor, safety locks for the chair in place of the passenger's seat, and the electric chair to go up and down the ramp and all around the town with ease. Rand agrees. Just getting me to accept that a minivan is the answer is a big step! I wanted a better solution but I guess this is it. If you know of anyone who has a rear-controlled power chair, please put them in touch with me as I have run up against an brick wall. The minivan is the easy part of this puzzle.

Speaking of puzzles, Rand has completed dozens of 200-300 piece puzzles and I've glued each one together. They are proudly stacked in his room and his puzzle supply is down to rock bottom. I asked if he wanted me to find more puzzles for him and he said no - I think he has had his fill! I wonder how he would like water colors, with an easel, drop cloth, etc. Any other ideas for him?

The speech generating device was approved in September by the insurance company - Wheeeeee! That means that they will pay for 80% of the cost including the wheelchair mounting. That is huge!! I haven't heard anything more about it, so I suppose the paper work is slowly grinding its way through channels. Pretty soon I will start hounding them to find out where everything stands. I'm anxious to get my hands on it and start the programming and training process.

Speaking of training, I have taken on five teacher interns this semester, coaching them through the first months of their careers. It is a challenge to say the least. One has already resigned and I'm concerned about at least one more. I have agreed to work with them this semester - we'll see how it goes and if I can or want to stay with it longer. Parts of it are fun but parts are an awful lot like work!

All is well. Rand is as handsome and sweet as ever. Please keep him close in your thoughts and prayers. Do stop by to see him - he loves to go for a walk and to show off the eight "Rand Elness Honorary Handicapped Curbs" on Antigua Drive! Keep those cards and letters coming.

Love,
Connie

Rand at the Beginning of September, 2007

August was a busy month for both of us. Rand got a new recliner (blue of course) that is better in so many ways. It is electric and the back and foot rest operate independently of each other. That eliminates the foot stool and another piece of furniture he has to navigate around as well as gives him more independence and control of a part of his life. You have seen pictures of Rand in the "Saving Strokes" program. That has been so good for him even though he is very hard on himself. The final golf lesson is next Tuesday and is followed by a lunch. His PT and OT sessions continue every other week and the music therapist will begin again as soon as the golf program is ended. Thuan continues to work with Rand six days a week.

We also had company in August in the form of good, old friends from Southern Calif. We haven't seen each other in too long a time and had such fun together.

Rand also had a sprained foot from some near falls in PT, twisting his foot as he began to go down. The doctor confirmed that there was nothing broken or fractured, just a bad sprain. All is well now. Rand also got a new brace for his right leg/foot. This one is articulated and allows him to bend his knee and ankle for the first time since his stroke. We can already see a difference in his gait. He is able to "walk" more normally again after having his leg/foot in a rigid brace since his stroke. Nice!!

Last winter I wrote a letter to our City Council person asking how it was possible for the City of San Jose to permit the establishment of an assisted living home on Antigua Dr. for six mobility impaired adults and not provide the handicapped curbs required by Federal law. I got a visit from the City Engineer telling me that I was right and the curbs would be installed in 2007. They are done!! The "Rand Elness Honorary Curbs" are about to be broken in by Rand himself sometime this week and we will celebrate with champagne! Whoopie!

Last week the excitement around here was that a 10-12 inch alligator lizard took up residence in the kitchen, between the cabinets. It stayed for three days and I didn't know how to get rid of it. FInally it came out into the open and I was able to "escort" it out the door with some help from a magazine. Yuck! They are very snake-like in their appearance - way too much for me!! Uff da.

I may be out of my mind, but I have taken on five intern teachers as their coach/mentor for the semester. We are just getting acquainted and I start with observations on Monday. It could be fun and rewarding, it could also be that I am out of my mind!!

Yesterday I started a weekly exercise class based on the Feldenkrais method. Very interesting - unlike any class I have taken in the past. I felt good when I left. I am doing well on my resolve to take a trip once a month, even for a day, just to get out of town. Last week a friend and I went to San Francisco to see "Jersey Boys." Run, do not walk, to get tickets when it comes to your area. I just loved it! We stayed overnight in SF, ate wonderful meals, rode the cable cars hanging on the outside, had Irish Coffee at the Buena Vista, a night cap at the top of Sir Francis Drake, did all the touristy stuff and had a great time. At the end of Sept. I will be going to Minnesota to see family and friends for ten days. I'm really looking forward to that trip. It is getting easier for me to leave Rand and I think it is easier for Rand to see me go. He is always so sad, but I think he understands, probably doesn't miss me much once I leave and always welcomes me home with open arms. I have monthly "get-aways" planned through the end of February.

The speech generating device for Rand continues to be a work in progress. It seems to have dragged on forever. We were supposed to have the big meeting last week but it was canceled at the last minute. I hope, hope, hope, that it is rescheduled ASAP. Interestingly enough, the SLP that I had a run in with last winter is the one who makes the decision about recommending the device for Rand!! Uff da. Her comments still rankle my hide but I hope they don't color her judgement. I'll keep you posted.


Keep Rand close in your hearts and prayers.

Love,
Connie

"Saving Strokes"

Today Rand had his second golf lesson. Last week he had so much trouble with balance that he rarely hit the ball. Today he hit a ton of balls - some were pretty good shots. It was hot already this morning so he rested frequently, drank lots of water and was slathered in sun screen. Having him hit balls at the driving range is a two person job. Thuan steadies/holds Rand and watches out for his own head while I tee up the ball, make sure his club face is on the correct side of the ball, help with positioning the club (he was using a 6 iron today) and act as the major cheerleader and gofer. The pictures below show Rand in various stages of his swing, Thuan trying to hold him up and still duck for cover, the Pro working with him and Thuan and the PT helping him into the cart at the end of the session.

Rand is very hard on himself and I'm not sure he really enjoys it liked I hoped. His frustration level was high - hitting a golf ball for the first time in almost two years and left handed to boot is tough. He was very critical of himself. Maybe next week he'll feel better about it. I still think it is a wonderful program and I'm so glad he is involved!

Keep Rand close.

Love,
Connie

Rand in mid-August

The most exciting thing happened today - I got the call saying that next Tuesday Rand starts taking golf lessons! He is going to participate in a golf program sponsored by the American Stroke Association called "Saving Strokes." How's that for a clever name? Golf courses around the area donate space, the golf pros donate their time and a limited number of pre-stroke golfers get involved in the game again! Rand is happy, happy, happy! When I told him that I was going to get him involved in this program last spring, he poo-pooed the whole thing. What me golf again? No way. Today when I told him the lessons are about to start, he grinned from ear to ear! He will learn to swing left-handed and from a wheelchair, but it is a start. After the lessons are over (it is a series of four) there is a golf tournament for all the Saving Strokes participants. The most amazing thing is that the coordinator of that tournament is the only student Rand and I both taught in our combined years of teaching! I had her in second grade and Rand had her for history in middle school. Small world! She and I had a good talk recently. Amazing!

Rand will never truly walk again like he used to, but he is getting so much better at walking the way he can now. He uses a quad-cane and has to have at least one person with him to keep him balanced and safe, but in that way he can walk across a room and back. Last week he was molded for a new leg/foot brace - this one will be articulated which should help his gait so much. The brace he has now is solid and rigid - there is no give to it at all. The new one will have an ankle joint so his ankle can bend with each step. What an improvement that will be! The therapists and I are so anxious to see his reaction and how it impacts his walking. The brace will be ready in another week or so. He is also going to get new socks made just for wearing with a brace.

In another week or so Rand will be getting his new recliner/lounge chair. It is electric, with a much higher seat than the current one so he can get in and out of it easier. The back and built-in foot rest operate via electric controls and independently of each other so he can move his feet and legs by himself and not be stuck until someone can do it for him. It also eliminates the separate footstool which has become a pain as Rand becomes more able to move around his room on his own. It will be one less obstacle for him to contend with in the room. I'm excited!

Last weekend Rand and I celebrated our 44th wedding anniversary! We had some friends over for champagne and cake and we had a good time. With Manny's help, Rand made me a special anniversary card that made me cry. He is so sweet - no wonder we made it together this long!

Rand continues to do well - he's healthy, content, has a positive attitude and is knee deep in 100-300 piece puzzles. Right now, there is something wrong with his right foot. We don't know what happened, but as Manny said, it is wonderful that Rand can feel that it hurts and can tell us where it hurts. Until recently that was not possible. We'll keep a close eye on it. Rand has plateaued in many areas - his occupational therapy will end next month and I fear that the physical therapy will be close behind. Those therapies end when the therapists can't continue to document significant gains for Medicare. He just completed another eight consecutive days as a demo patient for Recovering Function and is scheduled to return in November and again in February. I hope the speech generating device will culminate at the end of this month and that the wheels will start spinning again. Despite his iron will power, he has not lost any weight. But he hasn't gained any either and that's good.

Keep those cards and letters coming - Rand loves every one. Please stop by for a visit - he loves that even more!

Keep him close in your thoughts and prayers.

Love.
Connie

End of July Update

As the calendar turns once again and Back to School sales are in full swing, it is time to give you an update on Rand. In a nutshell, all is well: his blood viscosity is right on the nose, he's healthy as a horse and has been very good about healthy eating. He will be weighed next week so we can see if there is any weight loss. He is a puzzle maniac and has a stack of glued puzzles completed. A friend made a great suggestion and some of the puzzles are now under plastic and used as placemats at the dining table! The other residents get a kick out of seeing which one they get on any given day. He can complete 300 piece puzzles with a lot of help. One to two hundred pieces are best. I think I've bought every one on eBay!

His physical therapy continues twice a month. He is now walking an obstacle course each time - on uneven surfaces, stepping over objects, stepping up onto platforms and down the other side, using both legs alternately to stay balanced and having to use his sense of distance, logic and experience to get from point A to point B. The obstacle course is set up between the parallel bars so sometimes Rand uses that to support himself and sometimes he uses his quad cane. His walking has improved so much in the last couple of months! In occupational therapy he is required to put a lot of pressure on his right hand/arm. We can see some movement in his right bicep and feel some strength in his lower arm, too, when he does that. The therapist has him using his left arm to do tasks while balancing himself on the right. I'm not sure he really realizes how much weight he is supporting with his right side. Either way, he has come so, so far!! Thuan continues to work with him every day. Every Tuesday morning, Emily, the music therapist works with him for an hour. Rand loves it! Rand continues to be the prize demo patient for Recovering Function so gets a double dose of excellent therapy frequently. He is in the middle of another two hour session every day for eight consecutive days.

Today we met with Jennie, the Speech/Language Pathologist, about the speech generating device we called Mo. Her life has been chaotic the last few months plus she has changed jobs, so little has been done about the grant. I think we are back on track and I hope we can submit the paperwork by the end of August. She will not be working with Rand as a speech therapist any more but she will stay with us through the grant process and on into the training phase. So much time has passed since Mo was around that it is hard to assess where Rand is with the whole notion. Jennie is now in the administrative end of the outpatient treatment program so will no longer be seeing clients. We were lucky to have had her when we did.

Friends from another part of Calif. visited us a couple of weeks ago. It was such fun to have them here. Another couple from So. Calif. will be visiting near the end of August. It has been years since we've seen them also, so it will be great to have them here.

Recently, the husband of a former colleague who now lives near Phoenix, died suddenly and unexpectedly. She asked a couple of us to spend a few days with her. It was a tough time, a fun time, a nostalgic time. There were lots of tears, laughs, serious talks, plus some shopping, plenty of time in the pool. It was a healing time for me, maybe more so than for her. I heard myself in many of her comments, laments, and wishful thinking. Meg told me to use her as a gage of how far I have come. Boy, oh, boy - I have come a long, long way in the last eighteen months. I'm proud of myself and how I have gotten through this life changing event. I still have a long ways to go, but I think I'm doing well.

In about two weeks, Rand and I will celebrate our 44th wedding anniversary! I hope we can do something special that day.

Keep Rand close.

Love,
Connie

First Half of July

This is a summary of the first half of the month of July.  I know that I said I would put the Epistle on hold for the time being, but so many little things are going on that I decided to write an update.

Rand has been doing puzzles galore!  He wants each one glued, not returned to the box.  There are stacks in his room and I don't know what to do with them as there is no place to display them - now what!?

Thuan became a US Citizen on July 5 and wore Rand's red, white and blue jacket on the big day.  Rand was so happy and proud of him!

July 14, Bastille Day, marked one year since Rand left the hospital for good.  He came "home" that day to the rainbow/Randbo banner from the Fisher School group and took up residence on Antigua Dr. on July 14, 2006.  Last night, returning from an outing with friends, I asked him if he wanted to come home for dessert.   He said no.  That was the first time ever that he has turned down an opportunity to come to the house.  I guess the transition to his new home is complete - this is no longer home to him.  I hate that.

He's watching his weight with that enormous will-power of his.  He chooses fresh fruit over candy, cookies and goodies every time.  I haven't seen a drop in pounds yet, but that will come.  His blood test results are the envy of all of us - cholesterol, triglycerides, etc. numbers are perfect.  His blood viscosity is still variable and the coumadin is adjusted every two weeks.

Rand's becoming a good solitaire player - when I'm there.  He won't try it on his own yet.  He misses some moves and doesn't see all the possibilities.

I've ordered a new lounge chair for him.  It is electric with separate controls for the back and the foot rest as well as a seat lift.  It is made by Zero Gravity and, again it is in blue.  The company is changing the controls to the left side for Rand so it should be here by Labor Day.  I think it will solve several problems that the current one creates such as being too low to get in and out of easily, letting him raise and lower his legs independently without waiting for help and eliminating the separate foot stool- another piece of furniture that gets in his way.  I am concerned about the electric seat lift as I see it as a safety issue - Rand doesn't know when to stop and I fear that he will go head over teacup as that feature catapults him up and out of the chair.  I'll have to figure something out.  His chair from home worked well until recently, but now he can transfer much easier except that he sits so low in the chair.  When he needed two people to help him stand up from the chair, it wasn't a problem.  Now it is.

We had company for a few days.  They are old friends and Rand loved seeing them and every minute spent with them.  While they were here we called another couple that we used to run around with and had a fun, funny six-way conversation.  The photo below was taken during that phone call.  You can see how Rand enjoyed hearing their voices and laughing at old memories!

This week Rand was a demo patient for Recovering Function - he was the only one and the instructor worked on him in front of the class.  Later this month he will again be a  demo patient for Recovering Function for eight days.   We are so fortunate to have him receive this extra therapy by the best of the best in the nation!

My latest resolution is to take a trip every month.  The trip might only be one day, but I will get out of town and have a change of scenery.  I find that I am rejuvenated, relaxed, and have new energy when I get away.  It is good for my soul as well as giving me something to look forward to. I have two July trips planned - one to an Indian casino out in the middle of nowhere!  It is a one day adventure and I will thoroughly enjoyed myself.  The other is to the Phoenix area to spend a couple of days with a friend whose husband died suddenly and unexpectedly this week.  I hope I can offer her some solace and insight - if not, I'll just be there.


Rand enjoying a phone call from far-away friends.

All is well - Keep Randbo close.

Love,
Connie

July 2, 2007

Summer vacations have started with a vengeance and I think I will put this Epistle on vacation for awhile, too. Thuan is off to Vietnam, Jennie is on vacation with her family as is Emily, the OT and PT at Kaiser are scheduling Rand in around their time off and our lives are becoming very quiet and predictable. I will start writing the Epistle again when there is something to write about.

In the meantime, you can picture Rand and me spending time together every day, talking, working on puzzles, going for walks around the block, playing cards and eating healthy weight-conscious things! A restaurant called "The Sonoma Chicken Coop" is about to open half-way between our houses. I'm looking forward to taking Rand there for lunch in the near future.

Until then, be well, stay healthy and keep Rand close.

Love,
Connie

Jnue 29, 2007

Oh, my - what an emotional rollercoaster of a day. This morning I went to see a friend and helped her out with some computer issues and she took me out for lunch. We had a good time. From there I went to see Meg, (the therapist who has helped me through this life-changing event) dragging all my baggage, worries and endless questions with me. I can't tell you all the things we discussed, the insights she gave me, but I felt better when I left. From there I went to spend time with Rand. He finished the 300 piece puzzle and we glued it together. A friend came by, the three of us went for a walk and then Rand wanted to start one of the sports puzzles another friend gave him. In between times, he ate a freshly picked tomato from our garden and loved it! He did not mention my absence yesterday, nor did I. I told him that we now have a new fountain and he smiled and nodded with some understanding. We reviewed his schedule for July, as it stands now, finished up the June tractor calendar and flipped over to the July center-fold a day early! Wow - that tractor is a real beauty! When I left I did not mention that I won't be there tomorrow as I have the SJ Rep play in the afternoon. As several have said, Rand lives in the moment and the moment constantly changes and so does his attention. If I'm not there, it probably doesn't occur to him that I'm gone. He was so surprised and happy to see me today - I could have been gone for a month rather than 24 hours.

In a nutshell, Meg and I discussed the fact that I am a "do-er." I have gotten through much of this nightmare by "doing" things for Rand to make him the best he can be. I set a goal, know the steps I have to take to get there, do them, accomplish that goal and move on to the next one. I've done that with all aspects of my life and it is one of the ways I have worked through anxiety during my career, marriage, day-to-day living. Now that I am in the acceptance phase of our lives, I can see the end is in sight for things I can do for Rand. Arranging for his therapy is coming to an end, I've done about all I can do with the speech generating device, I no longer have to take on the medical establishment, call meetings, set the agendas, take notes, run interference for him. All of those things kept me up to my ears, focused and sane for seventeen months and Rand was my full-time job 24/7. That is coming to an end and I have few places left to channel my anxiety and energy. Maybe finding a van with a hydraulic lift, maybe locating a better lounge chair for Rand, but that's easy, piddly stuff. Meg is suggesting, as she always has, that I need to look out for myself. I need to find an outlet other than Rand. I've known the day was coming but it always seemed somewhere in the future - but now it is here and I'm rattling around in my cage not knowing what to do or how to handle it. She also mentioned some "Freudian Slips" that I made in our conversation that indicate my confusion and unsettled state. Sometimes I said "our or we," other times I said "my or I," as in "my house/our house; my car/our car; the tomatoes from our Farm/my Farm," etc. Where does Rand fit into my world? Am I "I" or am I "we?" What will I do when I no longer have to make his well-bring my top priority? Meg is sure that I will be OK, will land on my feet when all is said and done. But anxiety and worry are not something I handle well and my coping mechanism is coming to an end. Now I understand that it isn't worry and anxiety about doing the right things, but anxiety and worry about not having anything to "do." One day at a time, just one day at a time and it will all work out. It always does. But I want to know what to plan for next, I need to know what I have to accomplish in order to be helpful and satisfied, to make Rand the best he can be. The answer my friends, is blowing in the wind - I hate the wind! Will I ever be able to sit back and watch the world go by with out jumping on board and trying to organize it? I wonder - I sure hope so.

Keep Rand close.

Love,
Connie

June 23, 2007

My sister, Annie, and I arrived at our respective homes last night after a great week in Puerto Vallarta, Mexico. We got too much sun, ate too much shrimp, spent too much time in the water, drank some of the best and worst margaritas on the planet, bought too much silver, did so much sightseeing that we thought we'd drop over. All in all it was a wonderful week!

Rand was taken aback when I walked in to his room today - he was so happy to see me but wasn't quite sure what to say. I'm very tan, very sunburned and I had my hair braided by a vendor on the Malecon! Annie had her's braided too - her's is cute but I look like I've been scalped! He got over it quickly but suggested I ditch the braids ASAP! I will do that soon.

Rand and I talked a lot and went for a long walk. He has been doing puzzles like mad and Manny has been taping them together. I got some puzzle glue to bring him tomorrow. I'm not sure what to do with all the puzzles - I was hoping they would eventually be taken apart, put back in the boxes and passed along. No such luck.

The doctor was there this afternoon and pulled me aside to talk about Rand's weight. He's guessing that Rand has gained about 25 pounds. Uff da - he doesn't need to carry all that around. A few months ago I made a half-hearted attempt to suggest that visitors bring healthy snacks and treats for Rand, but now is it very important that we all do that. Please think twice about bringing him milkshakes, cakes, cookies and other goodies. Puzzles, magazines, non-fat coffee drinks, diet soft drinks, fruit chunks, etc. are all necessary choices now. Any food brought to him will be portioned out so he has some at the time and the rest saved until later. I'm the worst offender so it is back to the drawing board for me.

Rand had many visitors while I was gone and we both appreciate the time you took to stop by. Thank you.

It is good to be home - I missed Rand as much as he missed me. I am getting better about traveling alone, having experiences I can't reminisce about with him and not feeling guilty about being gone. Tomorrow is Monday but I will be with Rand - I'll try to take another day off later in the week.

Keep Rand close - he is the Sweetheart of the Western World!

Love,
Connie

June 15, 2007

Rand's blood test results came back and it was 3.5 - way too high. The Coumadin Clinic folks want it at 2.5. Adjustments continue. Rand has stacked up all the puzzles he has done, one on top of the other, all under the green felt puzzle keeper. It makes for a lumpy surface for the newest puzzle - rows and rows and rows of Heinz catsup bottles on a white background! Two friends came to visit Rand today so we got the frame completed and left him with the miserable center! He was in good spirits and thoroughly enjoyed the company. I was glad they were there, too as it made my departure easier. Rand was sad, but it will be OK.

What timing - a tree that was killed by the frost last winter was replaced this morning and the new fountain for the entry way also arrived so I had them delivered at the same time while the landscapers were here. I made banana nut bread last night, used it to feed the landscapers and took the rest to Rand's House this afternoon. It is so nice to have the lighting, irrigation and planting issues taken care of.

This morning when I tried to get my boarding pass to Puerto Vallarta online, Alaska Air wouldn't allow it. The website told me to call Alaska to confirm the flight, which I did. When I was talking to the agent I asked what I had to do to get a boarding pass and she looked it up and told me I was going to be denied boarding - I wasn't going to be allowed to fly!! It turns out that I booked my ticket as Connie but my passport says Constance so the names don't match, no dice, no flying!! EOWZWER! New rule for International travel. I don't know how long I was on the phone - but I finally got my name changed and was allowed to print my boarding pass. In all the traveling we've done, I've always had Constance on my passport and Connie on my ticket with no trouble. Now is its big trouble! What a relief to have found that out a day early instead of at the airport! Whew!

I will be leaving early tomorrow/Saturday morning and will return Saturday evening, June 23. There will not be another epistle until June 24. Thanks to you who are going to visit Rand in my absence. Both of us appreciate it.

Keep Rand close.

Love,
Connie

June 13, 2007

The technician who did Rand's blood draw today, drew the cutest angel on the tape that she put over the puncture. She drew it upside down so Rand could see it. Very cute! I haven't heard the results of the blood test - I hope it is back in the normal range. Last time Rand's blood was too thin.

Recently I ordered Rand a pair of slacks online. When they arrived, they looked too small. I took them to Manny and asked his opinion. He took the seams on the sides of the waistband and put the waist band around Rand's neck. The side seams did not meet at the back of his neck and Manny proclaimed them to be too small!! I've never seen anything like it - it is the way to measure a person in a wheelchair, who is bed-ridden, etc. How nifty is that?? I went home and tried it out on myself and it works! Neat-o!

Rand talked a blue streak today but I could only understand bits and pieces. He became frantic this afternoon, trying to tell me something. I couldn't understand what he wanted or was trying to communicate - he kept saying "play" and "Minnesota." Then I remembered - the more frantic he becomes, the closer he is to a panic situation and those occur when he can not remember his name. I told him his name and my name, he breathed a huge sign of relief, then repeated our names over and over, smiling the biggest smile. He was so happy to have his name back.

Rand worked very, very hard in OT and PT again this morning. His legs were shaking towards the end and he was tired. I wish you could see how much progress he has made since he started Out Patient therapy last fall. Now he can lift his right leg/foot off the ground, take normal steps and correct the outward turn of his toe. His legs are getting stronger and stronger - he does squats over and over, his balance is improving and he's standing straighter than ever. Laura, the PT, says that she's afraid that he is exceeding the Medicare criteria for progress and she will have to move him from twice a month to once a month. I just hate to see that happen.

Today we finished off the NASCAR puzzle. Rand waited for me to come because he couldn't figure out the printing on the puzzle - it said "Dale Jarrett" and it made no sense to him. He was in good spirits and lately there has been no moaning and groaning when I leave. Maybe he is making a similar adjustment to mine.

Keep him close.

Love,
Connie

June 12, 2007

A piece of advice, if I may. While you are still going strong and not in crisis, make a folder for copies of critical sections of your Living Will/Family Trust. Make 10 to 12 copies of your Powers of Attorney, Authorizations to DIsclose Protected Health Information, Advanced Health Directives and other pertinent documents for your self and for your spouse, if applicable. File it in a place that is handy, so you can grab it and go if the situation demands it. If you haven't done a Living Will or Family Trust, run - do not walk to the nearest lawyer and get it done now!!

I spent this morning (hours!) sorting out copies and originals of our documents mentioned above. During the time of extreme crises, I had to locate the originals and make copies for every hospital, nursing home, rehab facility, doctor and surgeon that Rand had contact with for seven months. I never seemed to make enough copies so was always making more and more and more. One hospital alone has seven copies as they couldn't seem to keep track of them! The bottom line is that today I finally had to get those papers sorted out, put the originals in the safe deposit box and make sure that there are copies at the house. The sad part is that I no longer have Rand's Power of Attorney with original signatures - but I have a few copies! I'm sure the original got mixed in and I gave it to some unsuspecting medical person somewhere down the line. I went through the safe deposit box again just to make sure, but it is gone. Please don't put yourself in that situation. Take care of it now while the going is good. Thanks.

Keep Rand close.

Love, Connie

June 8, 2007

A couple of years ago Rand bought a great red, white and blue, stars and stripes jacket for himself. When we got home from the trip he discovered that it didn't fit and it has been hanging in the closet ever since. That jacket became Thuan's American Citizenship present with Rand's blessing. He's going to wear it to the swearing in ceremony next Wednesday. How appropriate. Right after the ceremony, Thuan and his wife are driving to San Francisco to get United States passports!

Rand, a friend and I had Happy Hour together tonight. She brought four small bottles of champagne, munchies and we celebrated together! It was such fun. Manny had to break up the party so Rand could go in for dinner.

I made apple muffins for Rand's house today and bought a new flag for the pole on the garage door at his house. The current one is getting pretty ratty. Rand and I will put it up tomorrow.

I haven't heard from the guy from Detroit with the converted Honda Element. I thought he would be here by now. Someone asked about the status of "Mo", if it is a dead issue. Quite the contrary. Jennie, the SLP, is writing the grant to Medicare and Kaiser, which if approved, will pay for 80% of the cost. We have decided to go with the Cadillac version for a variety of reasons, including the fact that Rand will outgrow the VW version too fast. After she finishes the narrative, then we have to go back to the Kaiser SLP and get their evaluations, doctor's signatures, I don't know what all, before the grant can be submitted. Then Medicare and Kaiser have to approve it. All these hoops take time. I don't know when the Caddy will arrive - it could be several weeks or months yet. I'll keep you posted.

Keep Rand close.

Love,
Connie

June 3, 2007

"Life is not the way it is supposed to be. It is the way it is.
The way you cope with it is what makes the difference"
Mark Twain

A friend sent me that quote today and it has real meaning. I hope I am coping in a way that makes a difference for Rand and for me - maybe even for some other people.

Our friendly passenger did not drive "over the hill" with us today - but will join us again tomorrow. I found out today that he is 52 years old - he had a stroke at age 50. That is very sobering. There is a new "demo" patient in the group this time and I doubt that he is 30 years old. He is far too young for that situation and it shows in his attitude. He is angry, argumentative, lashes out at the PT/OTs, is an unpleasant factor in an otherwise upbeat group. The instructors are so amazed at the progress Rand has made since they saw him in January/February. Not only his physical progress, but also his communication has improved so much.

Rand was very quiet today on the ride to and from Santa Cruz. He enjoyed his therapy time and Mason, in particular, worked him hard. When I left him a while ago, he seemed resigned, not happy, just resigned to the fact that I was leaving. He wants me with him 24/7 and his ability to understand that I can't do that comes and goes. I didn't take last Monday off because it was Memorial Day and this Monday we will be in Santa Cruz again. I will take the 11th off for sure.

Yesterday I got the letter from his doctor to be included in our Living Will/Trust/Advanced Health Directives, etc. It is also sobering to read that Rand is no longer capable of making decisions about himself and others. I know that, but coming in medical terms is another jolt. The copies are now all attached to the proper legal documents - another hurdle completed and another step towards peace of mind for everyone involved. I still have a knot in my stomach.

Keep Rand close.

Love,
Connie

May 30, 2007

A year ago today Rand was admitted to the hospital with pneumonia. It was seven long weeks later before he was able to return to his room on Antigua Drive. That was such a difficult time.

Tonight Rand and I drove home from a visit with the ophthalmologist who specializes in neuro-ophthalmologic issues. It was a lovely drive in the glow of a full moon and the best part was that Rand could see it! After all the tests, everything is said and done, the neurologist at Good Sam was right on the nose the day after Rand's stroke. Rand has no vision in the right half of each eye. When looking straight ahead with glasses on, he has 20/20 vision but he does not see anything to the right out of either eye. It isn't like there is a black area for him, there is just nothing there. His eyes are perfect, the retinas are healthy, the optic nerves are great, but the piece of his brain that processes his vision to the right side is damaged and can not be repaired. The ophthalmologist said that the best that Rand can do is to compensate for that vision loss by doing two things - one, make it a habit to always scan to the right to see what he missed and two, concentrate on keeping his eyes focused on an object. His eyes tend to jiggle and wander a tiny bit so things look blurry to him. He can compensate for that by concentrating on holding his gaze still until he sees the details he wants/needs to see. The doctor said it was like trying to see what is behind you. You know something is there but you can't see it unless you turn around and look. That's what Rand needs to do all the time - look to the right, scanning what he consistently misses.

Rand was very down when he heard the news and we explained it to him. I was so happy with the news, because I was afraid that there was permanent damage to his eyes and we would be facing diminished vision as time went on. Not the case! I think I was upbeat and convincing enough about the glories of his sight that by the time we got home, he was happy again. We talked about how lucky he is that he can see - friends, TV, puzzles, magazines, newspapers, the world around us and how tragic it would be if he had lost his vision. He will never be able to read again, but that's not news to me, nor I suspect, to Rand. Tomorrow is a new day, with new therapy ahead, a drive over the mountain and he can soak it all in visually!

Rand had a long hard morning of OT and PT to start the day. His walking has improved so much! He is now self correcting the right foot which wants to turn out. He brings it back forward with each step which is HUGE! The PT is so impressed with the progress he has made. I don't know how far he walked today with his quad-cane, but his legs were shaking by the end of the session. In OT, he stood for a long time, balancing himself, trying to put some weight on his right hand/arm while stacking plastic cones with his left hand. Tough to do and painful. After lunch he slept for hours! Tomorrow we start the next session of "Recovering Function" as a demo patient. We'll drive "over the hill" to Santa Cruz with our friend every day through Monday for two hours of OT and PT.

Keep Rand close. I hope he is sleeping well tonight - under a full moon that he can see if he wakes up!

Love,
Connie

May 22, 2007

This was another busy day. This morning I met with/interviewed another music therapist and hired her to work with Rand once a week starting next week. I feel good about her, her background, philosophy and experience. We agreed that this would be up to a four month trial period to see how it goes. Rand, she or I may decide that it isn't working, isn't appropriate, and terminate the agreement at any time, but I want to give it a solid shot. Rand poo-pooed the idea, rolled his eyes, laughed at the whole notion, but agreed to try it in light of my stubborn Norwegian-ness. I'm not giving up on finding some way to connect with what is going on in his brain and I'm not going to let him give up either. By the time we get well into music therapy, we should know more about the possibility of getting a grant for Mo and getting him set up permanently with Rand. All these irons in the fire do have a common thread and one of these days they should all come together. I told him about the SOP music intonation, music therapy I tried with him almost immediately following the stroke. He doesn't remember any of it - singing Row, Row, Row Your Boat and "singing" phrases as I held his hand and and moved it in rhythm with the words or song, the cds of his favorite songs I played in his room, in the car, trying to get him to sing. The night he first sang "Blue Moon". He remembers none of it. I think recounting all these efforts make him willing to try real, honest to goodness Music Therapy. We'll see.

I attended a luncheon for a professional group that I belong to and then spent the rest of the afternoon with Rand. It was good to see some former colleagues again. Tomorrow I'm having lunch with two former colleagues, one of whom I haven't seen in ages. Should be great fun. Following the lunch today I swung by my old school for the first time in two years. What fun that was!! "My" office looks the same and has held up well. There is wear and tear on parts of the school but my brass placque is still shiny and bright! I didn't even have to polish it this time! There are 12-15 staff members still there and it was wonderful to see them all.

Rand is just fine, no changes. We talked and I caught him up on several things and people, then we went out on the back patio and played solitare. Today we finally won a game!! Whee! That was fun for Rand and he had a good time piling the cards on aces in numerical order. Rand still has to slow down, look carefully as he mixes up the suits, colors and some numbers. He doesn't see all the moves available, so when I stop dealing or hesitate, he goes back to the cards and looks hard again. Often he finds what he had overlooked and corrects himself. We worked on the jigsaw puzzle for awhile, too. I'm impressed that he is keeping at this 300 piece puzzle. If he can do it, then a whole new world of "puzzledom" will open up for him. 150 piece puzzles are hard to find and are very childish in their themes - lots of Barbie and CInderella!

My cousin sent this Norwegian Blessing to me - how appropriate!

"May da ruts alvays fit da wheels of yer pickup - May yer ear muffs alvays keep out da nort vind - May da sunshine varm yer lefse - May da rain fall softly on yer lutefisk - And until vee meet again - May God protect yew from any and all unnecessary Uffdas!!"

All is well. Keep Rand close.

Love,
Connie

May 15, 2007

This was an interesting day with some exciting possibilities ahead! Once again, Rand was invited to be a demo patient in the "Recovering Function" class. This will be his fourth or fifth time and it is always soooooooo good! The class will run for five days from May 31 to June 4. We'll be there!

The other exciting thing that happened was that I got Rand signed up for golf!! A friend's daughter is an OT and sent me information on a program sponsored by the American Stroke Association and the PGA. It is designed to reteach stroke victims how to play golf and is called, cleverly, "Saving Strokes." An OT in Los Gatos runs the local program and golf pros teach it. Rand will start either in June or July, depending on the schedule. He will be taught to become a left handed golfer, will be able to learn right along side other stroke patients who are in the same boat/wheelchairs, and it will be at a nearby golf course. How perfect is that?? I'm so happy and excited for him! His reaction to the news was very ho-hum. We'll see.

I'm also pursuing the PT Cruiser conversion that I mentioned last night. I had a long talk with the folks in Detroit today about a lot of the details. They are sending me information including a video. I don't know if this would replace our other car or become a second vehicle - it is far too early to tell. Rand and his wheelchair might be too big for the car when converted. There is a lot of homework ahead. I'm looking into both new and used versions. Anyway, I still think it is exciting and has such possibilities. When I explained it to Rand, he scoffed. I told him that I won't be able to throw that wheelchair around forever and he laughed and laughed. Why do I even bother to ask his opinion?? As always, I will do what I think is best and the devil be damned!

The weather has been cool and windy - not good weather for walks. Today we sat outside on the patio and played solitaire together. He is getting pretty good but is not ready to play alone yet. The card order is still confusing and he doesn't see the moves available. Yesterday, in my absence, he started another jigsaw puzzle. Mo was turned on and he said he had been using it. Whew!

Keep Rand close.

Love,
Connie

May 14, 2007

Today was my second "Day Off" from seeing Rand and I didn't know what to do with myself. I did some shopping, (the red purse was gone so I got a dark, dark brown one instead), did some stuff around the house, kept looking at my watch to see how much time I had before I went to Rand's Room. I almost succumbed and went over there but forced myself to stay away. By then, Jennie the SLP, was there and I'd just be in the way.

I'm not ready to buy a new car yet, but I've started looking around for alternatives to a van with a lift or ramp built in. Our Nissan Murano is just about right for our needs, except that a week ago I strained my shoulder loading Rand's wheelchair into and out of the back end. It was a not so subtile reminder that I may not be able to do that forever. Last night I ran across a website that really got me going. Check it out at www.fminow.com/index.php Click on the PT Cruiser, then on "conversions." Is that slick or what?? Obviously, I would be looking at one that had the passenger side conversion. It could be an answer to my dilemma. There's a ton of homework to be done, but something like that could be great. Rand and I frequently rented PT Cruisers when we were traveling because of the space, size, etc. A model with all the bells and whistles could be wonderful - minus some of the paint jobs shown! Oh well, I have a couple of years to think about it.

I don't know how I can look forward to a day to myself on one hand and then turn around and not know what to do with it. Uff da. I hate to start planning my days off but I don't want to have another day like this either. I felt discombobulated, like I was wasting time. I had things to do at home that I didn't want to do like ironing, cleaning the kitchen, etc. Hmmmmmmm. I've got to get my ducks in a row.

Keep Rand close.

Love,
Connie

April 27, 2007

Rand is launched! This morning, Jennie and I presented the Speech Generating Device (named Mo) to him and held our collective breaths. (see yesterday's posting for photos) You know Rand, he never exhibits a lot of enthusiasm or excitement - he's a true Minnesota Norwegian, but I could see it in his face and in his eyes. He liked it, he really, really liked it! Jennie and I tried to take him through the pages, step by step, but he took off on his own, leaving us in his dust! I showed him the "Go Back" button on each page and he was off and running. He explored every button on every page, nodded approval at some, looked quizzically at some, laughed at some, seemed relieved at some. All in all, I think it was a success.

Now the work begins. I have been slaving over a hot SGD machine for 48 hours and have barely made a dent. Mo is very frustrating in so many ways, primitive in some ways, out-of-date in others, yet it is the only game in town. I keep reminding myself that I rented the VW version and the Cadillac version is probably much better, faster, up-to-date, less frustrating, etc. The goal is to make it user friendly and essential to Rand. Jennie and I have a lot to learn about this whole device and how to make it meet Rand's needs immediately. A case in point was today. This morning I asked Jennie to plug Mo into the power strip on the floor. She did. After our session was over, Rand and I went to his OT session and then to visit a friend in the hospital. When we got back, Rand had lunch and a nap while I ran errands. When I returned to Rand's Room later this afternoon, Mo was dead. It turns out that the power strip was unplugged from the wall socket, the battery ran out of juice and there you are. Rand tried to use it but it didn't respond and he didn't know why. We didn't have time to train the staff this morning and so an opportunity was lost. Foiled by a stupid error. AAAAAAAUUUGH!

But I am pleased overall with Rand's reaction. This is just the beginning of another long road and steep learning curve for both of us. I just hope that I make the right programing decisions for him, that I don't get too complicated, that I am realistic about his abilities, about the way he thinks now, that I anticipate his wants and needs accurately. This is a work in progress for a long, long time, but if I screw up, it will kill off his enthusiasm, his willingness to use it, his view of it as useful in the short term.

Jennie is going to be a great help in this also. She is going to work with Rand 2-3 times a week on Mo and will design some pages just for him to practice words on his own. She is also going to train Manny, Thuan and the other staff on how to use Mo to communicate.

There is one button on each page that says, "Hi - Come in." I wanted that greeting to be in Rand's voice and I thought it would be easy. Wrong. Rand, Jennie and I practiced it over and over, we shortened it, revised it, tried it again and again to no avail. Finally, he said it clearly enough that we got it recorded, but his voice was very soft. Rand was pleased with the result. Later this afternoon, when I got Mo up and running again, I played his statement for him and he shook his head, "no". I agree. He wants to try it again, louder, more clearly, with expression. YES! Go, Randbo, go!! This will be a part of our daily routine - getting Mo to say what Rand wants him to say.

Next time you come to visit, be prepared to use Mo to communicate with Rand. It is a two-way device - and I'll be happy to show you how it works.

Keep Rand close.

Love,
Connie

April 26, 2007

Below are some photos of Rand's new SGD, (Speech Generating Device) called the "Mighty Mo." Hmmmmmmm. Anyway, I wanted you to see it so you have a notion of what it looks like and how it works. Please excuse the messy kitchen table -
Mighty Mo from the front

and from the business side - USB ports, etc.

I am using the top row of four "buttons" on all pages (Hello, HELP, Please Wait, Not Here) and then adding another row of four things just for Rand. For instance, the second row on Rand's says, "PEOPLE", "MANNY", "TALKING", and "OUTSIDE" buttons. Those are the only buttons on his page. When Rand touches "Manny", another screen comes up with four things he might need Manny for - like the bathroom, water, temperature control, and needs. If he presses the needs button, another screen comes up with items he might need: sweater, moving to another chair, the remote, etc. If he pushes the people button, a screen comes up with friends, family and doctor. Push the friends button and your names will come up, same for the family. Today I want to figure out how to put the picture of the person as the graphic on the button with their name. Someday soon, I hope, each person's button will lead to a page devoted to them so Rand can find out about the person's golf game, fishing trip, poker game, whatever. In other words, every single page has to be created, programed, graphics and sound added just for Rand. Big job. The SGD will be mounted on a swing away arm on his wheelchair so it is always in front of him, he can't forget about it or ignore it, it will always be right there. It can be snapped off the mounting and used on a table top whenever that is needed, plus it is portable.

All of the pre-made pages have 16 buttons on them and that's too many for Rand. Four should do the trick for now. I can always update it and increase it as his needs change. Right now, the goal is to have it simple, easy to use, not confusing and to make him successful right off the bat! This is what Rand will see if he touches the "OUTSIDE" button:


Hope this helps you understand what I'm up to and what is going to hit Rand tomorrow! WHEEEEEE! Keep those body parts crossed that this works and keep Rand close.

Love,
Connie

April 26, 2007

Below are some photos of Rand's new SGD, (Speech Generating Device) called the "Mighty Mo." Hmmmmmmm. Anyway, I wanted you to see it so you have a notion of what it looks like and how it works. Please excuse the messy kitchen table -
Mighty Mo from the front

and from the business side - USB ports, etc.

I am using the top row of four "buttons" on all pages (Hello, HELP, Please Wait, Not Here) and then adding another row of four things just for Rand. For instance, the second row on Rand's says, "PEOPLE", "MANNY", "TALKING", and "OUTSIDE" buttons. Those are the only buttons on his page. When Rand touches "Manny", another screen comes up with four things he might need Manny for - like the bathroom, water, temperature control, and needs. If he presses the needs button, another screen comes up with items he might need: sweater, moving to another chair, the remote, etc. If he pushes the people button, a screen comes up with friends, family and doctor. Push the friends button and your names will come up, same for the family. Today I want to figure out how to put the picture of the person as the graphic on the button with their name. Someday soon, I hope, each person's button will lead to a page devoted to them so Rand can find out about the person's golf game, fishing trip, poker game, whatever. In other words, every single page has to be created, programed, graphics and sound added just for Rand. Big job. The SGD will be mounted on a swing away arm on his wheelchair so it is always in front of him, he can't forget about it or ignore it, it will always be right there. It can be snapped off the mounting and used on a table top whenever that is needed, plus it is portable.
This is hat Rand will see if he touches the "OUTSIDE" button:

All of the pre-made pages have 16 buttons on them and that's too many for Rand. Four should do the trick for now. I can always update it and increase it as his needs change. Right now, the goal is to have it simple, easy to use, not confusing and to make him successful right off the bat!


Hope this helps you understand what I'm up to and what is going to hit Rand tomorrow! WHEEEEEE! Keep those body parts crossed that this works and keep Rand close.

Love,
Connie

April 26, 2007

Below are some photos of Rand's new SGD, (Speech Generating Device) called the "Mighty Mo." Hmmmmmmm. Anyway, I wanted you to see it so you have a notion of what it looks like and how it works. Please excuse the messy kitchen table -
Mighty Mo from the front

and from the business side - USB ports, etc.

I am using the top row of four "buttons" on all pages (Hello, HELP, Please Wait, Not Here) and then adding another row of four things just for Rand. For instance, the second row on Rand's says, "PEOPLE", "MANNY", "TALKING", and "OUTSIDE" button. Those are the only buttons on his page. When Rand touches "Manny", another screen comes up with four things he might need Manny for - like the bathroom, water, temperature control, and needs. If he presses the needs button, another screen comes up with items he might need: sweater, moving to another chair, the remote, etc. If he pushes the people button, a screen comes up with friends, family and doctor. Push the friends button and your names will come up, same for the family. Today I want to figure out how to put the picture of the person as the graphic on the button with their name. Someday soon, I hope, each person's button will lead to a page devoted to them so Rand can find out about the person's golf game, fishing trip, poker game, whatever. In other words, every single page has to be created, programed, graphics and sound added just for Rand. Big job. The SGD will be mounted on a swing away contraption on his wheelchair so it is always in front of him, he can't forget about it, ignore it, it will always be right there. It can be snapped off the mounting and used on a table top whenever that is needed.

All of the pre-made pages have 16 buttons on them and that's too many for Rand. Four should do the trick for now. I can always update it and increase it as his needs change. Right now, the goal is to have it simple, easy to use, not confusing and to make him successful right off the bat!


Hope this helps you understand what I'm up to and what is going to hit Rand tomorrow! WHEEEEEE! Keep those body parts crossed that this works and keep Rand close.

Love,
Connie