Friday, 7 December 2012

Update - December 4, 2012

Allison has been home for five weeks since her discharge from the Rehab Centre and has gotten into a solid routine. She has been having two speech therapy outpatient sessions at the Rehab Centre, two music therapy sessions at home, and two fitness sessions with a personal trainer at the YMCA each week. Allison also plays piano, works at Sudoku, does speech and music therapy homework, goes for walks, and has been attending a number of musical performances (Welcome Winter, Bach Christmas Oratorio, Metropolitan Opera broadcasts, Orpheus, etc.). She has also enjoyed musical Sunday afternoons at home with friends. We are hoping for more of these musical Sunday afternoons, as Allison’s music therapist says that music, music and music are all important to Allison’s recovery!

Allison’s speech therapist at the Rehab Centre says that Allison hasn’t hit a plateau, and that she is now making particularly good progress at being deliberate with alternate word selection after recognizing that her initial word selection isn’t correct. This is a big difference from when her outpatient speech therapy started a few weeks ago, as at that time Allison used a lot of jargon and her speech was confusing. This morning Allison aced a few speech therapy exercises that she had struggled with previously, to the extent that the speech therapist accused her of showing off for her husband. However, naming objects continues to be problematic for Allison at times.   Regarding Allison’s continuing good humour, the speech therapist says that she’s told her own husband that if she had to have a brain injury she “would want to be like Allison because her good humour gives her about 50% more function.” Unfortunately the Rehab Centre outpatient speech therapy will not last much longer, and we will begin the search for a private speech therapist soon. However, Allison’s speech therapist says she has recommended that Allison begin receiving occupational therapy at the Rehab Centre as an outpatient in the new year, as her communication skills have improved enough that she will now be able to benefit.

A representative from the Aphasia Centre attended for an initial home visit with Allison last week, and set up a follow-up meeting with Allison at the Centre. Beginning in the new year, Allison will also be able to attend a weekly two hour session at the Centre. The Aphasia Centre representative explained that aphasia affects (1) word processing; (2) reading ; (3) writing; and (4) comprehension in varying degrees, and emphasized that often the effects are not fully apparent in individual cases until well after the brian injury occurred. The speech therapist at the Rehab Centre is encouraging Allison to take advantage of the Aphasia Centre’s group sessions, as the group environment will present new challenges.

The less-good-news is that a bare spot has appeared on Allison’s head, where the incision was made to insert the titanium piece in place of her missing skull section. Dr. Peters, the plastic surgeon we met last week, says that as the titanium piece is no longer sterile it has to be removed, and replaced with a new titanium piece in an operation which will involve skin grafting. Allison’s neurosurgeon Dr. Lesiuk and Dr. Peters have scheduled the surgery for this Friday, and Allison is expected to be in the Hospital for a few days afterwards. Allison’s attitude towards this new development is that regardless of what has to be done, she will just keep dealing with any and all obstacles until they are overcome. Remarkably, over the past twelve or so months there have never been any “Oh woe is me” comments or reactions from Allison.

Marya and Allison have jointly taken on the traditional Christmas treat-making that Allison has done over the years, so no worries about a treat deficit over the holidays. All for now and best for the season!

Monday, 5 November 2012

Update - November 5, 2012

Allison has spent her first full week at home after her discharge from the Rehab Centre! She had two outpatient speech therapy sessions at the Rehab Centre last week and one music therapy session at home.   Allison is making progress (her music therapist hadn’t seen her for a couple of weeks and said she found Allison’s progress “remarkable”). The other good news is that Allison is confident that she can recover her ability to speak coherently, with the benefits of therapy and time.  Her music therapy is being bumped up to twice a week, and so her regular weekly outpatient speech and home music therapy sessions will total four in number. Otherwise, her weekly calendar is still a work-in-progress, as we are waiting for a Home Visit from the Aphasia Centre of Ottawa to find out what programs it has that are recommended for Allison. Once we have the Aphasia Centre programs lined up, and add a couple of weekly personal trainer sessions at the YMCA, she will have a fairly full agenda.

In the meantime, Allison spends her time quite gainfully, playing the piano quite a lot (her favourite activity it seems, and she is playing very well), working on her speech and music therapy exercises, Sudoku, going for daily accompanied neighbourhood walks, reading (although her vision has been impacted, and she is going for an appointment with her optometrist soon to see if her prescription is part of the issue), and catching quite a few naps during the day. When she is well-rested, Allison’s energy and sociability are reminiscent of the pre-surgery Allison, and if you met her casually to just exchange hellos, you would never know anything has been amiss.  

This coming week Allison and Bob are travelling to Western Canada to visit family, including their new grandson Blake.   When Allison is back in Ottawa in mid-November, we are hoping that her full weekly agenda will be soon be in place. Subject to needing time for lots of rest at various points during the day, and getting through her scheduled activities, it will be great if she can have the opportunity to benefit from social interactions with friends. 

Friday, 26 October 2012

Update - October 23, 2012

Almost five months to the day since her brain surgery at the Heart Institute on May 28th, Allison is being discharged from the Acquired Brain Injury Rehabilitation Centre later this week! While being discharged from the Rehab Centre is clearly a very major milestone, it is only one step along the road in a long journey ahead.  Allison will be continuing as an outpatient at the Rehab Centre for two speech therapy sessions a week, plus, she will also be having music therapy sessions at home twice a week. The rest of her weekly schedule is still a work-in-progress. It will involve a few occupational therapy and recreational sessions, some of which may be arranged through the Aphasia Centre of Ottawa and/or the Champlain Community Care Access Centre. 

Anyone will tell you who has seen Allison recently after an interval of a few weeks, she has made remarkable progress in a short time. This progress appears to be related to a variety of factors, not the least of which are the excellent therapy she has been receiving, and Allison’s marvellous dedication and her upbeat bearing.

While Allison has been very much looking forward to the day that she can remain at home full-time, she has also been a “real trooper” about going back to the Rehab Centre on weekday evenings. This is partly due to her own formidable constitution, but it is also greatly due I think to the very positive atmosphere that the staff at the Rehab Centre manages to maintain. The daily social interactions that Allison has enjoyed at the Rehab Centre appear to have been large contributors to her progress. Once that daily interaction is off the table it is a whole new ball game.   The plan is to try to build a weekly schedule for Allison that meets both her social and therapy needs, while being cautions to ensure that she also has lots of time for rest.

Allison’s daily regimen while at home on weekends now includes going for a walk, various exercises on an iPad speech therapy program, and playing piano. She has also been doing Sudoku, reading the newspaper and a novel, and restoring some order to the house. This latter activity she carries on quite relentlessly.

 A big thanks to Allison’s sister Linda for her recent visit and splendid contributions to the well-being of the family members. One of these was a terrific turkey dinner, that is still being enjoyed.  

Thursday, 4 October 2012

Update - October 4, 2012

Allison has had another good week, going home for a couple of hours for dinner on a daily basis, and also going home for the weekend.

She and Bob traveled on the weekend to Lac Xavier near Tremblant to stay overnight with friends. This was Allison’s first trip anywhere since the spring, and she said she “adored it.” Her only complaint was that she wanted to sleep in the car, but the fall foliage was so spectacular that she couldn’t keep her eyes closed! The route was a familiar one, and Allison showed good improvement in her long term memory, suggesting they take a back road shortcut, pointing out where they had taken a wrong turn before, and asking whether they would have to walk down the long hill to the cottage.  Allison’s short term memory, on the other hand, has room for improvement.

Apart from memory, Allison’s main difficulty is with speech, although we are noticing continuous improvements.  Allison’s speech-language pathologist at ABI tells us that Allison has made “quite a marked improvement” in her ability to comprehend single words and to find the right words, when given semantic cues (such as carrier phrases) or phonemic cues (such as “um” for “umbrella”).   She says that although Allison is “much improved” on this front, she “fatigues quickly”, and then has a tendency to perseverate on a word she has used previously. Mary adds that this is “quite normal” for someone with the type of head injury that Allison has, and for the level she is at now.  She also says that Allison is “highly motivated” (this is a surprise) and that she managed to convey to her that she wants to work with a music therapist.  Her speech therapist advises that she thinks this is a “great idea” and she has offered to collaborate in any way.

Allison is aware that there was a benefit concert for her, to which a great many people contributed and gave their support. She’s been a little chagrined at times about people making such efforts on her behalf, but when she reads cards and letters from supporters explaining why they are helping, she is very rightly pleased.

Wednesday, 26 September 2012

Update - September 26, 2012

The past week goes down as a most memorable one in Allison's ongoing story. Every weekday she had a few hours of therapy at the ABI rehab clinic, and came home in the late afternoon for dinner, returning around 7:00 P.M. ready for bed, so she would be well-rested for more therapy sessions the following day. Plus, for the first time she had a weekend pass, subject to 24 hour supervision by family, and injections given at home. This went well, but it was not without its priceless moments.

The Sunday evening benefit concert (which Allison did not attend, as we think it would have been overwhelming for her) was successful beyond belief. Marya, with the aid of an exceptionally talented and dedicated group of friends and performers, put on what was truly an extraordinary event. With almost 400 advance tickets sold and a walk-up attendance estimated at around another 200 (with people turned away at the door) the Southminster Church was packed. And people were treated to a gem of a concert.

As a fundraiser, the event was a smashing success. Host Rob Clipperton announced at the concert that total donations and ticket sales reached $35,000. This is far beyond anyone's expectations and is a huge boost in funding for Allison's rehabilitation and related medical expenses! While the performers all deserve enormous accolades for their wonderful contributions, Doug and Pat MacDonald did a splendid rendition of the Duke and Duchess, with eloquently re-written G&S lyrics featuring Allison and her husband.  This script is available for your reading pleasure here. 

Tuesday, 18 September 2012

Update - September 18, 2012

Allison has had yet another good week and there is a lot of good news to report. On Tuesday last week she moved from the Neuroscience InPatient Unit at the Civic Hospital Campus to the ABI Rehabilitation Centre at the General Campus.  After a short transitional period during which Allison wasn't totally convinced that the ABI Rehabilitation Centre was the right place for her (as compared to home, for example) she now seems to be quite on board with the ABI program, which typically includes several different therapy sessions in a day (Hallelujah!).

Then on the 111th day Allison actually went  home for a few hours on a day pass! She walked in as if she owned the place, stated that "It's so nice to be home," looked around a bit on the main floor, and then promptly sat in her favourite chair. She later went upstairs to enjoy the sunshine on the second floor deck. Realizing some of the furniture was out of place, she quickly re-arranged it, and returned the garden hose to its home.   One of the highlights of the day was that although for the last several weeks Allison hasn't been able to indicate where her passport was in the house, when asked her about it again on Sunday she walked over to and pulled it out of a vase in the living room. This was quite timely as the passport is needed in order to renew Allison's Ontario health card very soon.

Allison is doing very well on the speaking front after only a couple of speech therapy sessions, but there is a lot of work to be done by Allison in re-establishing her understanding of how words relate to objects and the like; however, there is no evidence of her being daunted.  We look forward to seeing the results of the music therapy, which begins this week.

Tuesday, 11 September 2012

Update - September 11, 2012

Allison has had another good week and events are finally moving quickly! Allison had her missing skull piece replaced with titanium mesh last week and she is no longer required to wear a helmet. Plus, the ABI (Acquired Brain Injury) clinic where she is going next for aggressive rehab has had a bed open up much earlier than expected and Allison is moving this Thursday. She isn't thrilled about not coming home at this juncture, but she understands that the therapy work now begins in earnest and that there is a ton of work to be done to re-establish her speech, etc.
In that regard we met on the weekend with Cheryl Jones, a music therapist who has excellent credentials and a wonderful manner. Allison was going to start music therapy sessions with Cheryl right away but now we'll wait and see how the music therapy fits in with the comprehensive ABI program before proceeding.  Some of the training Cheryl received was from the same doctor who trained the music therapist who has been working with Congresswoman Gifford to restore her speech after she was shot.  Cheryl established a rapport with Allison in a short time and Allison is keen about proceeding with the music therapy.

Wednesday, 5 September 2012

Update - September 5, 2012

Allison has had another good week in the Neuroscience InPatient Unit. Because of the large gains she's made in the past while, she's been accepted into the aggressive rehab program at the Acquired Brain Injury ("ABI") Clinic (connected to the Ottawa General Hospital) and she is on a three week waiting list. Allison will be evaluated when she arrives at the Clinic and a therapy program planned for her. We visited the Clinic last week and in Marya's words it looks "hard core". 
We are expecting that Allison's bone flap / skull surgery will take place sometime this week, although it remains subject to scheduling. Allison has recently been walking up a storm - to such an extent that she has to wear an electronic bracelet so the nurses can keep track of her.  When leaving the 7th floor with Allison, we have to check in with the front desk so the alarm can be turned off when she goes by.
Allison has been playing the piano a fair amount lately. Although her playing doesn't meet her own exacting standards, it is thrilling to see her able to concentrate on something for such extended periods. 
All of this is, of course, very positive; however, there is a considerable distance to go. Allison's conversation is quite often difficult to follow, her memory is a work-in-progress, and although she is physically stronger, she has balance and stamina issues which we expect to fade with time.

Tuesday, 28 August 2012

Update - August 28, 2012

The most remarkable thing happened today! Allison has been weaned off the IV that's been administering blood thinner and so her mobility is greatly improved. Marya took her Mom to a piano at the Civic which happened to have a piece of sheet music on it. Allison proceeded to sight-read and play the 2nd movement of Beethoven's Sonata Pathetique. None of us expected her to be able to do this. The rest of this update pales in comparison.

Allison has had another good week in the Neuroscience InPatent Unit. She continues to become physically stronger and is often quite talkative. Her comprehension generally seems to be quite high, and in her own words with respect to how things are going on the cognitive front, "it comes and goes."  Steady work with elementary iPad games has resulted in good improvement in her results. Marya has also had good success giving her Mom some simple dictées. We are hoping this bodes well for her upcoming work with skilled occupational and speech therapists when she is moved to a rehabilitation center.

In that regard we met today with Jane, the social worker at the Neuroscience InPatient Unit, to discuss the next steps. Dr. Lesiuk is back at work and the first order of business is that he is planning to replace the missing skull piece. When one sees the great concave on the left side of Allison's head and compares it with the large swelling at that point previously, there is no doubting the wisdom of the neurosurgeons in leaving the restoration until now. Following this procedure, which we are told is uncomplicated and can be day surgery for outpatients, Allison will be evaluated again by doctors from the Acquired Brain Injury Clinic. If she is ready for aggressive rehab at that point, she will be re-located to the ABI Clinic. If slower rehab is required initially, an application will be made to Saint Vincent's and the Civic doctors will do a comprehensive neuropsychological evaluation to identify Allison's rehabilitation needs. In either case, this will be a giant leap forward on the rehabilitation efforts front. Jane also tells us that Dr. Lesiuk emphasizes that these are "early days" in Allison's recovery.

Lately a visit with Allison is rarely a dull affair. Alastair Green reports that when he asked Allison what meals the Hospital prepares best her response was "they don't". Then Allison reflected a bit on this and added "no they don't". This was while she was eating. Allison's good humour and positiveness are front and centre although occasionally (this will surprise you) she likes to have her own way. The nurses say that a degree of feistiness, which is sometimes evident, is better for Allison's progress than complacency - which we don't see.

Tuesday, 21 August 2012

Update - August 21, 2012

Allison has had a good week and seems to have re-gained the ground she'd reached before her various medical setbacks. Her tolerance for noise has improved and she is now in a standard room with two roommates in the Neuroscience InPatient Unit. Having roommates has for the most part been a success.  Allison has had a variety of roommates, including a nice lady by the name of Gloria, who inquired as to whether Bob was Allison's father, and Marya her sister.

Marya has gotten valuable suggestions from a friend's sister, who is a speech therapist working in Montreal, as to how to encourage Allison's progress with language.   When Allison is alert she has become quite chatty again, and she remains possessed of determination and a positive attitude.  One example of this is when Marya told her Mother that "life is tough" in relation to a relatively minor matter, and Allison responded "I don't think so".

We continue to hope that all of the medical hurdles Allison is dealing with will soon be overcome and that she will be able to benefit before long from regular, organized occupational and speech therapy, etc. In that regard we are very appreciative of the enthusiasm being shown for Allison's benefit concert at 7:00 p.m. on Sunday September 23rd at Southminster Church in Ottawa and for the extremely generous donations to her trust fund.

We are also very grateful to those of you who have been able to visit with Allison and do your best to lift up her spirits. Music continues to be a constant companion and joy for Allison and she would be very badly off without it.

Tuesday, 14 August 2012

Update - August 14, 2012

The highlight of the past week is that Allison has been moved out of Acute Care back to the Neuroscience InPatient Unit. However, Allison has not recovered the enthusiasm and steam she had before her recent setbacks and we are looking for this to occur in time.

Dr. Lesiuk has mentioned that he is not certain the ventricle drainage level is correct yet, and he says there is some expert judgment involved in determining this level. His plan is to keep monitoring the size of Allison’s ventricles and he says that if the drainage level is not correct, this will affect her progress.

Several people have left splendid tributes on Allison’s Facebook site, speaking of what a wonderful music teacher she has been and how lucky they are to have had her as their teacher. When these tributes are read to Allison she is clearly moved by them and she truly appreciates what’s being written.

The donations towards Allison’s uninsured medical and rehabilitation expenses have been arriving and they are being deposited in her trust fund. We plan to put this money to very good use, when Allison is in a position to begin receiving regular speech and occupational therapy. She is now once again receiving physiotherapy, although her movement is restricted by medical machines.

Tuesday, 7 August 2012

Update - August 7, 2012

Allison remains in the Neuroscience Acute Care Unit at the Civic Hospital. She had a new shunt installed on Thursday morning and her external drain was removed; however, her non-responsiveness, which began a week ago, continued on Thursday and Friday. A neuro-team visited her on Friday afternoon and said they couldn't detect any neurological (as opposed to neurosurgical) reason for Allison's downturn (beginning on Sunday July 29th).

After this period of non-responsiveness, this past Saturday brought a somewhat brighter day for Allison, which fortunately continued on Sunday.  Allison was also in quite good form at dinner this (Monday) evening, sitting up in her chair and eating on her own for the most part. She was also fairly talkative during dinner. Also, as is often the case when she isn't laid low by one thing or another, she appeared to understand pretty much everything said to her, and she also appeared to remember the events / scenes in some photos showed to her before. Deirdre was greeted warmly by name when she arrived during dinner, and it's also possible that Allison had some instructions for Bob upon his departure.

We continue to hope that Allison will not need to be in the Neuroscience Acute Care Unit much longer and that she can be moved before very long to the Neuroscience InPatient Unit, and then to Saint Vincent's where her rehab work will begin in earnest.