National Aphasia Awareness Month - June 2010

This month is National Aphasia Awareness Month. Aphasia, as described on the NAA's website, is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing. Millions of people around the world are effected by Aphasia and yet so very few know what Aphasia is or fail to recognise a person as aphasic. Last year in the UK a man who was later found to be suffering from a stroke was institutionalised and treated for mental illness after he suffered from a sudden inability to speak. Imagine being that man. Imagine being able to understand everything that is going on around you but not being able to speak or write. That man could have been my dad, it could have been anyone you know. That's why it is so essential people are aware of Aphasia and the effect it has on a person.

The majority of people suffer from Aphasia as a result of a stroke but it can also be the result of a head injury, brain tumor or other neurological causes. You cannot generalise Aphasia as there are so many different forms of it and you might never find two people with the same level. NAA describes the following as the main types of aphasia, the names of which are often derived from the area of the brain effected by the stroke or head injury:

Global aphasia: This is the most severe form of aphasia, and is applied to patients who can produce few recognizable words and understand little or no spoken language. Global aphasics can neither read nor write. Global aphasia may often be seen immediately after the patient has suffered a stroke and it may rapidly improve if the damage has not been too extensive. However, with greater brain damage, severe and lasting disability may result.

Broca's aphasia ('non-fluent aphasia'): In this form of aphasia, speech output is severely reduced and is limited mainly to short utterances of less than four words. Vocabulary access is limited and the formation of sounds by persons with Broca's aphasia is often laborious and clumsy. The person may understand speech relatively well and be able to read, but be limited in writing. Broca's aphasia is often referred to as a 'non fluent aphasia' because of the halting and effortful quality of speech.

Mixed non-fluent aphasia:This term is applied to patients who have sparse and effortful speech, resembling severe Broca's aphasia. However, unlike persons with Broca's aphasia, they remain limited in their comprehension of speech and do not read or write beyond an elementary level.

Wernicke's aphasia ('fluent aphasia'): In this form of aphasia the ability to grasp the meaning of spoken words is chiefly impaired, while the ease of producing connected speech is not much affected. Therefore Wernicke's aphasia is referred to as a 'fluent aphasia.' However, speech is far from normal. Sentences do not hang together and irrelevant words intrude-sometimes to the point of jargon, in severe cases. Reading and writing are often severely impaired.

My dad suffers from a form of Broca's aphasia. Immediately after his stroke, on Easter Sunday 2008, he was seen by a speech therapist in order to identify to what extent his speech had been affected and in order to start speech therapy. My dad spoke with his eyes at first and it was through his eyes that we were able to know that my dad was still in there. We had doubts at first but with time we were able to realise that he truly was in there. One advise that I held on from the very beginning was not to compare my dad's aphasia to other's. Being optimistic is a great medicine but being overly so can be crushing for the person going through it and for his/her family too. There are several guidelines that aid in gathering a general understanding on how to communicate with a person with aphasia, the most complete is found on the NAA's website. Here are the main points from my own experience with my dad:

1. Allow time for communication, don't rush for answers, fire away too many questions or cut in the middle of a sentence;


2. Make sure there are no other distractions. I found that if my dad is in an environment with a lot of noise or people around him his attention is not as it normally is and his communication levels suffer as a result;


3. Praise every effort and encourage him to carry on. It must be so frustrating to spend a good 5 minutes trying to say what you are thinking so when the sentence is finally done it feels like a big achievement;


4. Remind him of how he used to be straight after the stroke(head injury etch) and how far he has come now;


5. Don't make references to how he used to be before the stroke because that's not a fair comparison. Focus on the here and now;


6. Most importantly treat and speak to your loved one as you used to. He has not lost his intellect through aphasia. He is still the same intelligent person he used to be. Don't treat him otherwise.

There are no known cures for aphasia and the process to reestablish communication are difficult and lengthy. The main tool that can aid aphasia recovery is speech therapy. There are centers specialised in aphasia all over the world but spaces are often limited and the length of your therapy depends on availability. My dad is lucky to have found a great center that has allowed him speech and group therapy every day for the last year but as I have said he is one of the lucky few and more funding is needed in this area in order to allow the same opportunity to everyone who needs it.

It is also essential to know that aphasia can effect anyone, young or old, female or male, of whichever nationality. Shortly after my dad's stroke I started a facebook page called Aphasia Awareness and which has grown from only a few members to 441 members today. We have people from everywhere writing about their own personal experience with aphasia or others like me who need advice on a loved on. Most of the stories are truly inspirational, one in particular is the story of Sarah who had a stroke at the age of 18 and who has aphasia as a result of the stroke. Through her own determination together with the help of speech therapy and a great support system around her she is making terrific progress. Her mom is a member of the Aphasia Awareness group on facebook and I believe she is a truly inspirational woman. Her positive attitude and fighting spirit are just admirable. They have created a YouTube video of Sarah in order to spread stroke awareness and aphasia. Here is the link in case you want to see what amazing progress Sarah is making.

Last year during the month of June I raised awareness through my facebook page and also raised money in order to buy a camcorder for my dad's center. They use the camcorder to record one on one sessions as well as group session and later being able to see what progress has been made and also from the teacher's prospective identify areas of improvement. This year I have no energy so I will have to raise awareness mainly online and this is my first attempt.

If you want to know more about aphasia go to te NAA's website where you will find many links and useful information. It also contains links and advice in other languages. I hope this helps.

Making progress - 100th post!

This is my 100th post! It does feel like yesterday that I started the blog whilst waiting for IVF cylce number 2 and here I am 21 weeks pregnant today. I will never stop saying that life has its ways of surprising you in the most amazing of ways!

Given it's the 100th post I want to make it a positive one. I worked out the courage to buy paint last week. I went on my own as D was working and got about 10 miniature paints that just happened to be on sale. I lined them all up on our kitchen counter and they stayed there until Friday. Friday we have our cleaning lady come over and spend a good 5 hours cleaning the house from top to bottom. As the little cans were in the way I put them in a lovely pink bag and brought them up to Peanut's room. They stayed there until Friday at 11 pm. I was already in bed by then but I could not sleep. D went on his company retreat last Wednesday night and when he is away I never sleep well. So I was tossing and turning and decided to get up and paint instead. I "borrowed" a doctor's mask from the first aid kit at work.. I know, "bad girl"! I put that on and I scared myself when I looked in the mirror.. I would not make a pretty doctor!! How do the people on Gray's do it??? Anyway, I put on the mask, got some paper for the floor and my brand new paint brush and I started. My back started hurting at the end cause I kept on bending over to wash the brush etc but I was happy with the result. I stuck the stickers from the bottom of the cans to check which paint is which and voila'. Nursery colour selection is ready!

Here is proof:






I like the first colour from left and the second from right the most. I tried the colours in the bright light first thing in the morning and at night with the ligths on and off and the two that look the best all around are these two. I sent D a picture of it and he likes the first one from left the most. We shall see what he thinks when he sees the colours in person. He is back tonight and I cannot wait to see which one he goes for. Once we agree I can start preparing the room and he can get started on the paint. I already know which paint to get. I cannot find no VOC paint here but I have found one that is Green Certified with low VOC. I suppose it will have to do. I intend to leave the balcony door open so that we air the room out completely.

In other positive news, I allowed myself the pleasure to go for a pregnancy massage yesterday. I booked it when I went to get my hair cut last time and have been debating it in my head ever since. One minute I was set on going, the next I was talking myself out of it. On Friday whilst the cleaning lady was busy I emptied out my wardrobe of all the clothes that I no longer fit into. Which leaves little or no pre-maternity clothes left in my closet. I spent a good 2 hours tidying up the clothes and then bringing them all downstairs to be placed in one of our suitcases for later discovery. All the work of the day plus the night painting gave my back a run for its money and by the end of the day I was so really tired. That was the deciding factor in going for the massage. I stopped thinking about it and I just showed up for my appointment at 4. I know the spa as I go for my eyebrow threading and hair cuts there but I hadn't tried their massages yet. My masseuse was there to welcome me with some fruit tea which considering the heat outside, went down like a treat. She explained how she wanted me to be lying down and how to move from one position to the next. She also showed me the oil she would be using which is especially formulated for pregnant women. I felt reassured and safe knowing I was in good hands. Once I allowed myself the chance to relax and enjoy, the massage was pure bliss. Isabella enjoyed it too as she was kicking away happily. I left the spa in a super relaxed state of body and mind. Isabella still kicking away but then she always kicks away when I drive. I figure she likes being in the car.. I think the movements and the vibrations from the car must wake her up! She kicks a lot to Razorlight music and Britney Spears... oh dear! The verdict on the pregnancy massage is that I will go back as soon as I feel like I need another one. I am glad I did not allow my fears to get in the way of enjoying this lovely experience.

Today D gets back and I am so excited. It's the first time he goes away on a "holiday" without me. OK, it was not exactly a holiday it was a company retreat but wives and partners were allowed to go so under normal circumstances I would have gone along too. He went to Macau which he did not find to be that impressive, it's like Vegas but all in Chinese. There are historic parts of town but unless you are into gambling you are not going to enjoy it much. Yesterday he went to visit Hong Kong and he fell in love with it. He said it's so clean and modern but with older building and that the streets are like those of London. He spent the day exploring with some colleagues and managed to do some shopping at an open air market. He said that he ate the best Chinese food ever and that we don't even know what Chinese food is like until we have tried the real deal. That made me so hungry and still does as I type!! LOL I cannot wait to hear all about it in more details and seeing the pictures!! I miss him so much when he is gone and for the last 2 weekends and more he has been so busy with work and then this trip and I already know this week is a short one as he is off to Belgium for his brother's wedding on Friday morning till Sunday night. I cannot wait for a weekend just the two of us away from it all. Anyway, he is coming back tonight and he will be all mine for the next 5 days ... that's what counts!! Cannot wait.. I feel like a child!!!

My family - my dad

I have realised I have not spoken about my family yet and felt a sense of guilt so today I want to put that straight starting with my dad.

I come from an air force family. My dad was a pilot in the Italian air force and we were followed him wherever his work took him. We moved pretty often and we lost count of how many different houses we lived in and how many different schools we attended. We made friends just to lose them a couple of years later. We were always the new kids in school. The good thing about being air force kids is that you got to live amongst other kids who all went through the same thing. They understood us and never made us feel "strange" about our gypsy lives. We also had our own private facilities that "civilians" wouldn't have access to. We would have pools and tennis courts, parks to safely play in, officers mess to go eat at and food rations! It was a bit of a life outside ordinary life and the first time I lived somewhere that was not an air force base was when I went to Uni. I still feel a tingling feeling when I pass airbases or when I go visit one, that was our life.

My dad did really well for himself and went up the ranks pretty quickly. He hated desk jobs and loved flying. Whenever the air force stuck him in an office for a couple of years he would go into a depression. His love for flying and for being in that kind of active environment was what made him happy. He had two major crashes in his career but luckily he survived both. The biggest of the two happened when I was just 2 years old and he was lucky to make it safe to the ground minus a couple of bad bruises. He was an amazing leader to his men and people loved him wherever he went. When he came to family life.. he was a military man. He was not a big fan of being called daddy and he didn't believe in hugs and kisses. He was hardly home but when he was home we knew we had to be on our best behaviour. He wanted me and my brother to be competitive at sports and I always felt he thought we were a big disappointment in that sense. He just didn't understand us. He retired early from the air force when they told him he could not fly but still went on to become a consultant to the air force. So he was still going on simulators and teaching students.

This was my dad until two years ago. The dad I know now is a completely different person so in a way it is as if I have two dads. Two years ago he suffered a major stroke which he survived and he is lucky to be alive. After 6 months in hospital he was deemed fit enough to go home. He only stayed home 1 month and then he had to be readmitted because his heart went into atrial fibrillation again. Since then he has undergone heart surgery and with the help of medication his heart seems to be under control. The stroke has changed my dad in many ways. He had to learn how to eat and swallow solid foods, how to walk again and then run. He recovered very well but he still cannot use his arm/right hand but he attends physiotherapy sessions 3 times in order to keep active and hopefully recover more. This hasn't stopped him from getting a modified car and learning how to drive again! I told you he is a fighter

The stroke has also affected my dad's ability to speak. He has Broca's Aphasia. When he first came out of ICU we thought he could not understand us at all but as we researched and learned more about Aphasia, we discovered that Aphasia does not mean a loss of intellect. So as much as his ability to communicate has been impaired, his intellect is intact. He had to learn a new method of teaching his brain how to speak all over again because the impulses that we have as babies and that help us learn how to speak were gone. He attends a specialised center and has formed a great bond with Anna, his speech therapist. He is a fighter in every sense of the word and has gone such a long way from not being able to say yes or no to now being able to be make full sentences. He is still struggling on a daily basis for people to respect the fact that he is still the same person and for others not to treat him differently. He has many ups and downs but overall he is doing so great and I am so proud of what he has achieved and what he aims to achieve in the future. Last year on his 60th birthday he stood up and made a speech to all of us. Needless to say we were all in tears by the end of it. Such a proud moment!

The biggest change that I have noticed in my dad since the stroke is how much his behaviour has changed towards us. Whenever we see him he always tells us he is proud of us and that he loves us. He shows a lot of affection towards my mom in a way that he wouldn't before. He is a different dad and a different man and in a strange way he is a better dad now than he has ever been in the past. It is as if he has realised how he could have lost it all and as if the stroke made him realise what's really important in life.

I am so grateful to have another chance at building a relationship with my dad and I am thankful he is still alive to tell him how much I love him.

Wordless Wednesday

Our daughter's face....

I write to you from cloud nine, I have been there since 9.15 am this morning and I have no intention of coming down any time soon!

As you have guessed the scan went really well. Isabella is doing really good and all looks just as it should be. The ultrasound was super high tech and the technician was so sweet and knew what she was doing. She first looked at our baby and took all the measurements that she needed to take, like her head, thigh bone, heart and even her kidneys and many more parts that we didn't even recognise. After she was done measuring and she was sure all was ok she played our daughter's heartbeat and that was great too at 150 bpm. Then all of a sudden she pressed something and from a black and white picture of Isabella we saw her face. I started crying my eyes out. She is the most beautiful , most perfect little girl I have ever seen. The technician made me move to the right, where Isabella normally is so she could getter a better look at her face. It was so quick on the screen but once she printed out the pictures, you can see her features so well. She was sucking her thumb just like I used to do as a baby and she sleeps with her hand to her head just like her daddy does. It was incredible and D and I could not stop looking at her picture. We are so in love.

After the ultrasound we went to see our midwife who guided us through the results of the blood tests I took last time as well as the u/s. My blood work came back all great but my iron is slightly low so I am now on iron tablets for a month. No big deal and to be honest I was expecting this as I suffered from mild anemia for a while before getting pregnant. All the rest looks great and my glucose levels looks great so unless they drastically change I get to avoid doing the glucose test! Happy about that as it does not sound like much fun! She went through the ultrasound results and told us all looks just as it should do and gave us facts about Isabella. She measure 20w3d, my placenta is posterior, the amniotic fluid is just right and all looks great.

It was D's first visit at the hospital so I was anxious to hear his reaction of my choice and he was super impressed. He thought the place is really well organised and uses the highest technology which he is happy about. I can breath a sight of relief. It is a bit strange as it's a government hospital so the men have to wait in special waiting rooms but they really didn't make a fuss and everyone made him feel welcomed. We go back in 4 weeks (at 24 weeks) too check all is ok and then at 32 weeks I have an appointment with my doctor (haven't met him yet) to discuss my birthing plan. That should be fun!

I feel so extremely blessed. Pregnancy has been the most amazing experience of my life so far. I still feel like I am living in one perfect dream. Life does not get better than this. Most nights I am just happy sitting on the couch feeling Isabella moving and seeing my belly button moving up and down forming waves. Knowing that it's our daughter doing this makes it incredible. When I think back about our TTC days and the days when we really thought this would never happen, I just feel extremely lucky to be experiencing all of this magic. To now be able to put a face to our daughter makes it all more real and I truly hope that the worrying about whether this is all real will cease. I am so in love.

Now here are the pictures of our beautiful Isabella Anna:

20 weeks today

Today we are 20 weeks and at the halfway point of pregnancy. It truly feels amazing to say we are halfway there. So many changes have taken place since I got pregnant and as I haven't broken them down yet, in honour of being 20 weeks I thought I would do so today.

Weight gained so far: 7kg (15 pounds) I could not believe it but the scale does not lie!!I have always been a size 10 UK (US 4) and I am now a 12 UK ( US 6). I am happy with the weight I am putting on and have decided to put all my pre-pregnancy clothes that don't fit away until the baby is here in order to make more space for the clothes that do fit me!

Biggest change: my belly of course and my boobs. A friend suggested I buy a bra extender and it's been a life saver. I would be going through bras like there is no tomorrow if it weren't for them.

Best maternity purchase: the Spoiled Mama creams! They cost me a lot but it really was an investment and they really do live up to the hype. My skin is super soft and smooth and no stretch marks in sight.. oh and I smell lovely!!! Oh and also The Expectant Father book I got for D. He loves reading it each month and it has reassured him and me on a couple of occasion! I would highly recommend it!

Movement: started Wednesday the 12th of May with just a few quick movements and it is now getting stronger each day! I can now feel her kick and move from one side to the other. I feel her more at around 3/4 pm, during the evenings after dinner and when I try to go to sleep.

Major purchase for Isabella: the pram. It took me a long time to find it but I believe we found the best one for us. I just cannot wait to receive it now, it should be here in mid- June.

Nursery progress: I can proudly say I am finally making progress. Yesterday, I went to get lots of different small bottles of pain to try out in Isabella's room. I know it's a small step but we are getting there and that is what counts. I will post the pics of how the different colours we are are considering look in her room and also of the one we will pick!

How is D doing: he loves his little girl and speaks to her all the time. He cannot believe how much my body has changed but whether I am having one of those moments or not, he always tells me that I am a "yummy mummy"! He has been very supportive of me and my moodiness and craziness at times. He is worried about being able to support us financially, even if I work too but I think that is a natural phase all expectant fathers go through. We try to talk most of our worries out even though I have noticed that he is trying his best not to tell me his so as not to worry me. From now on I will have to make more of an active effort to ask him how he is feeling and let him know that he can still speak to me.

Sleeping: not so great. My nose gets stuffy and my mouth dries out which makes is harder to sleep. I used to sleep mainly on my belly so now that I can no longer do that I toss and turn a lot (waking up D most nights). I also go to the bathroom once a night which used to make going back to sleep impossible, but by now I am used to it.

Cravings: no major or weird ones yet. I did have a craving for tuna melts last week but that was it so far.

Best moments: we have been blessed with so many in the last 20 weeks that I don't where to start. From the actual "we are pregnant" moment, to the first ultrasound, to finding out that we were having a girl, to the first kick, to talking to her and feeling like she is the best gift in the universe. I could go on because every day is a blessing and a small miracle and we are so thankful for what we have been granted.

Next big step: tomorrow we have our 20 week anomaly ultra sound and we cannot wait. We pray all looks great and that she is developing as she should be. We also hope to be able to see her pretty face because it's been since week 13 that we saw her face last!

Saying goodbye to our Miracle Doctor

Today is a better day. Thanks for all your messages, they made me feel less of a weirdo about feeling the way I do. Last night I spoke to D and he says that we should take it one step at the time in terms of the nursery. We can start by choosing a colour for the room. So this weekend we are going to get some colours to try them on and we'll see where we get from there.

Yesterday was our last appointment at our RE's clinic. Up until we have been so lucky to have been able to be looked after by her exclusively, however even if I trust her 100% I don't trust the hospital she delivers in and the shame is that she cannot deliver in the one I want to deliver in. We made the choice of delivering in the main maternity hospital in the city, the one with the more specialised staff and the one with a specialised NICU. I went to open a file there two weeks ago and then last week I went for my first visit with a midwife and I was so impressed. Everyone is super friendly, helpful and welcoming. So as our insurance does not cover me seeing two doctors I had to make a choice and given the fact that I will deliver in that hospital it makes sense for me to get my check ups there and get to know the staff that will deliver our baby girl.

So that bring us to yesterday's goodbye. Dr.S was so understanding about our decision, she completely respected the fact that we felt more comfortable in that hospital and that we wanted to become familiar with the staff there. She recommended a doctor for us to see whom she knows so that if she needs to provide him with any updates during the delivery they can be in touch. As it was our last visit with her and given the fact that we last saw her 3 weeks ago she did a quick u/s to check on Peanut and to make sure all is ok with her. She looked so much bigger, her head was right under my belly button and her legs were near my bladder. We saw her long spine and her lovely hands which are always around her face. We were able to only get a glimpse of her lovely face but she was shy so we have to wait for that. She also confirmed with this cute u/s picture that Peanut is indeed a girl! She measured her head and for the first time she is right on schedule for a 10/10/2010 delivery!

After the visit we sat down for a goodbye chat and I begged Dr.S not to retire because we want to come back for baby number 2 with her. Dr.S and her husband own the clinic she works in, her husband was also a RE but he has now retired. She said she is looking to hire more doctors to carry out the work and for her to have more of a supervisory role with more . We also asked the delicate question about our embryos. I won't go into it now as this will take a whole post on its own right but it's not great news. We thanked her so much and said that we will keep her updated on our progress and definitely be in touch. I can see myself going back if I am not satisfied with the level of care I receive at the hospital or if I am not happy with some results I get or just to pop by and say hello. I truly hope she will be working when we start thinking about baby number 2 because she truly made our miracle happen, she is our Miracle Doctor with a big heart and no matter what happens in the future she will always hold a special place in our hearts.