As both our minds and the weather slowly shift from summer breezes to the slight chill of Fall, the NAA has managed to blend the two seasons easily with the arrival of our Summer/Fall 2011 Newsletter!
Along with the warm, comforting staples of our Group of the Month and incoming mail, we would like to direct your focus to the especially refreshing re-cap of our National Aphasia Awareness Month events, as well as a special article about Cyber Safety. But don't worry - it doesn't just end there! As always, our newsletter is full of surprises and news that will touch all of your emotions, and we are happy to share it all with you.
Last October, Lord Rodgers, 73, was forced to resign the leadership of the Liberal Democrats in the House of Lords after suffering a stroke five months earlier.
With extraordinary courage, he is battling aphasia, a serious language disorder brought on by the stroke.
Bill Rodgers, who has three daughters, Rachel, 44, Lucy, 42, and Juliet, 41, lives in London with his wife Silvia, 73.
Here, he talks about the fight to regain his health.
The consultant was looking at me patiently. 'Can you tell me your name?' he asked. I opened my mouth but the words wouldn't come. It was like struggling to recall the name of a stranger.
Did it begin with an A or a B? Was it short or long? I simply couldn't remember. Where my name should have been, there was just one big hole.
Hours earlier, I had suffered a stroke. And, as I have discovered since, the path back to recovery is extremely slow. Although I have been very lucky in that my physical abilities are unimpaired, I have been left with aphasia - a serious disorder of language which makes simple tasks like writing down a telephone number or reading a newspaper extremely difficult.
The moment that changed my life was utterly mundane. It was 11.30pm on Monday, May 7, last year - a Bank Holiday - and I was sitting up in bed, drinking a cup of warm milk. Without any warning, the mug slipped out of my hand and crashed to the floor.
'How strange,' I thought. 'The handle must have broken.' But, when I looked down, I saw the mug was intact.
After that, everything passed in an almost dreamlike way. I tried telling my wife that something terrible had happened - I didn't then realise it was a stroke - but the only words that came out were gobbledygook. Poor Silvia was looking at me with great alarm.
I assumed I was going to die. It seemed an extraordinary prospect but, strangely, I wasn't scared. I was just curious, thinking: 'Is this really it? Is this what it's like to die?'
I was lucky because my stroke was a relatively mild one. Silvia called an ambulance and I was rushed to London's Royal Free Hospital.
The next few hours are a jumble. I remember I was asked my name and my date of birth. Strangely, although I couldn't remember my name for a few minutes, my date of birth came out in a huge rush: '28.10.28.'
Then I went to sleep - for 12 solid hours. My family had been told that time would be crucial. I might have another stroke or, if luck was on my side, I might start recovering chunks of what had disappeared.
I was extremely fortunate. When I finally woke, my body was working perfectly.
But I was soon to discover that simple tasks I'd taken for granted, such as answering the phone easily, enjoying a dinner party conversation and even buying a pint of milk, were now monumentally difficult.
The next day I remember sitting in bed carefully writing down the names of my six grandchildren. Laboriously, I worked them all out, starting with my eldest granddaughter: Laura, Milly, Jake, Alexander and Isabel. The only name I struggled with was Tom. I was convinced it began with a 'C'.When I finally got it, I shouted it out I was so pleased.
I spent four days in the Royal Free Hospital before being transferred to a special neurological hospital for another nine days.
The doctors there carried out a run of tests and assessments to see how much my brain had been damaged, and monitored my progress to be sure I was well enough to send home.
Once home, I imagined I would carry on improving by leaps and bounds. However, the process of getting back to full health has taken much, much longer than I expected. It has tested my patience and confidence to the limits and put a massive strain on my family.
Last October, I realized I had to resign. I remember writing out a letter, putting down my thoughts. I had to work really hard to get the words and the grammar correct. I knew then that I couldn't possibly go on.
I started speech therapy classes as soon as I left hospital and still attend every fortnight.
Every evening I edit pieces of writing, ensuring that I get the grammar correct, or I tape myself talking. When I play my speech back, I check I am making sense and not muddling my words.
Spelling has never been my strong suit - in fact, I was such a poor speller that at school I deliberately affected virtually illegible handwriting to disguise any flaws.
I think one of the characteristics of aphasia is that weaknesses are exaggerated. So now my
Bill and his wife
spelling and grammar are extremely shaky.
In fact, I have had to relearn English grammar totally. I've had to rediscover how to use subordinate clauses, even where to put verbs - all the things my 13-year-old granddaughter, Laura, is conversant with. It really has been like going back to school.
My speech therapist is brilliant, but it's shattered my confidence and tested my patience.
Although my long-term memory has been unaffected, my short-term memory is very poor.
I can't keep complicated arguments in my head or marshal elaborate sentences. Sometimes I'll forget what I've just said. It's very frustrating.
Telephone conversations are extremely difficult, too. For the first few months, I could talk only to close friends on the phone. Being involved in an unexpected conversation, having to think on my feet and, most of all, having to provide or take down a phone number, were all too much for me.
Even now, I can still get thrown by the unexpected.
In April, I made my first speech in the House of Lords since my stroke. It was a shocking experience. My argument evaporated. It was like driving through impenetrable fog. I had totally lost the thread.
As the pressure built, I felt more and more confused. When I finally sat down, nobody said a word. I felt awful.
Yet the bizarre thing is that when I finally asked a colleague how it had gone, he told me the speech was fine. To reassure me, he suggested I watch it on video - something I didn't even know was possible.
Sure enough, the speech did not look half as bad as I feared. In fact, I noticed only one mistake in my text.
I still don't know what caused the stroke. The doctors can't explain it, although there seems to be anecdotal evidence that you're more prone to a stroke if you're under stress.
I was under a lot of stress at that time. I had been very worried about Silvia, who had spent the previous month in hospital after being diagnosed with cancer. And I had taken on extra responsibilities at work because a colleague was ill.
I am confident I will recover fully - but it takes all my patience and strength of will to keep going. I've been told to take time and rest a lot, but I don't want to waste my life. There's so much left still to do.
The charity Speakability runs an information helpline for aphasia sufferers, freephone 080 8808 9572, and supports a network of self-help groups, tel: 020 7261 9572. The lines are open Monday to Friday, 10am to 4pm.
Primary progressive aphasia comprises a heterogeneous group of neurodegenerative conditions with diverse clinical profiles and underlying pathological substrates. A major development has been the publication of the recent International Consensus Criteria for the three major variants namely: semantic, non-fluent/agrammatic and logopenic. The logopenic variant is assumed to represent an atypical presentation of Alzheimer pathology although evidence for this is, at present, limited. The semantic and non-fluent/agrammatic variants are largely associated with frontotemporal lobar degeneration with TDP-43 and tau pathology, respectively. The applicability of the International Consensus Criteria to an unselected clinical sample is unknown and no agreed clinical evaluation scale on which to derive the diagnosis exists. We assessed 47 consecutive cases of primary progressive aphasic seen over a 3-year period in a specialist centre, using a newly developed progressive aphasia language scale. A subgroup of 30 cases underwent 11C-labelled Pittsburgh Compound B positron emission tomography imaging, a putative biomarker of Alzheimer's disease that detects β-amyloid accumulation, and they were compared with an age-matched group (n = 10) with typical, predominately amnestic Alzheimer's disease. The application of an algorithm based on four key speech and language variables (motor speech disorders, agrammatism, single-word comprehension and sentence repetition) classified 45 of 47 (96%) of patients and showed high concordance with the gold standard expert clinical diagnosis based on the International Consensus Criteria. The level of neocortical β-amyloid burden varied considerably across aphasic variants. Of 13 logopenic patients, 12 (92%) had positive β-amyloid uptake. In contrast, one of nine (11%) semantic variant and two of eight (25%) non-fluent/agrammatic cases were positive. The distribution of β-amyloid across cortical regions of interest was identical in cases with the logopenic variant to that of patients with typical Alzheimer's disease although the total load was lower in the aphasic cases. Impairments of sentence repetition and sentence comprehension were positively correlated with neocortical burden of β-amyloid, whereas impaired single-word comprehension showed a negative correlation. The International Consensus Criteria can be applied to the majority of cases with primary progressive aphasic using a simple speech and language assessment scale based upon four key variables. β-amyloid imaging confirms the higher rate of Alzheimer pathology in the logopenic variant and, in turn, the low rates in the other two variants. The study offers insight into the biological basis of clinical manifestations of Alzheimer's disease, which appear topographically independent of β-amyloid load.
We have just learned that our first Saturday Meeting scheduled for Saturday, September 24, 2001 has been canceled by the Church due to unforeseen circumstances involved with a Memorial Service of one of the Church Parishioners.
The next scheduled meeting at the Church will be onSaturday, October 15, 2011. The Church is reviewingit's schedule to give us a make up date to replace the cancellation.
This may be onSaturday, October 22, 2011and we will tell you as soon as we know.
I know how disappointed you all must feel. Both our Supervisors and Students have adjusted their schedulesto be with us for what was to be our Opening Session for the Fall Season. On behalf of IAM we are sorryfor this inconvenience.
We will tell you of a make up date as soon as possible.
The National Aphasia AssociationAs you know, technology surrounds us and changes by the second. There are many people with aphasia, caregivers and professionals who now rely on communicating via the internet. Below is a listing of aphasia blogs, online support groups and therapy programs.