This is not for sissies!

One thing has become abundantly clear to me over the last few months: recovering from a stroke or a head injury is not easy. It is bloody hard! It takes determination, optimism, courage, stubborness and committment to face the repercussions of a stroke or traumatic brain injury. This is most definitley not for sissies.

The hardest reality that I have to help my patients face is that a stroke or head injury is life-changing. They will never have the same life they had before the injury. Helping the inidividual and the family members to come to this realisation is difficult. They need a place to share their pain, disappointment and frustration.

Realising that your life has changed requires a period of re-adustment and a growing acceptance of the new reality. Your life may have changed but it is not over. There are always things to look forward to, ways to adapt old interests, new friends to be made, things to be learnt and shared. The journey of recovery is never travelled alone and there is always someone who has been there before you. But, the process is long and hard and patience is essential.

I find that one of the biggest attributes an individual will learn following a stroke or head injury is patience. If you were someone who was not patient before your stroke, you will learn to become patient whether you like it or not! The recovery process takes time. There is no end point but there is a long, difficult path that needs to be followed. I believe that recovery can continue for years and years after an injury. As long as you are determined to make an effort and do as much as you can for yourself you will continue to improve and grow.

So the recovery process is long and when you are in the middle of it, it seems never-ending. And we all have difficult days when we just want to give up, when we just can't see the light at the end of the tunnel. Those days will happen and they are not nice but they have to be endured. Remember that you are not alone. You have therapists, family and friends, new friends who have been along the journey ahead of you. They are all there to help you through those tough days or weeks.

You also have a choice. You can choose to be happy with the improvements you have made thus far. You can decide that you have gone as far as you would like to go and you are now happy to go on your own. You can decide that therapy has served its purpose and that you are now able to go it on your own. You've made new friends, new interests, learned new coping strategies and put all your therapy into practice. You are content with the new you.

 You can also choose to continue fighting and to persevere through the difficult days or weeks. You may decide that you want to improve a little bit more and reach a slightly higher level of ability, if possible. This requires a little more time and committment but it could be worth it.

I think each time you are faced with a difficult day where the new challenges are too much and the realities of your stroke are too stark, step back and realise you have a choice to make at each point. Sometimes the decision is made without even thinking about it. But either way the decision is noble as YOU are the one living life with the stroke or head injury. You have been brave and faced it head on. That was your choice.




 

It's all about character

I was asked to assess an 81-year-old lady in Neuro ICU. I will call her Mrs. B and she had recently suffered a stroke. I found a little old lady asleep in her bed with tubes attached and machines beeping quietly in the background. I quickly read her file and then tentatively tried to wake her up. "Hi Mrs. B., my name is Claire and I am the Speech Therapist", I said gently. With her eyes barely open, Mrs. B. responded, "My speech is perfectly fine, thank you!". And so our amazing conversation began.

This lady proceeded to reveal a personality with such presence and spunk it was astonishing. She had been preparing for her weekly game of bridge when the stroke happened and it was most frustrating. She told me how she had recently been on holiday to Victoria Falls with her son and how she used to play golf "fairly well, I might tell you although I didn't have my name in the papers". In between these wonderful stories, I was able to assess her swallowing, although she seemed to have it all figured out already. "It is much easier if I drink with a straw as my lips are too weak if I use a cup," she said authoritatively. My job was fairly straight-forward.

Then she said, "I can't believe that this has happened to THE GREAT MRS. B. I will not let the doctor win this round!" And I thought, imagine how wonderful it would be if we all had a self-concept that was so strong and solid as to refer to ourselves as being GREAT. Her essence was one of pure determination and wilfulness and she was not going to let a stroke get the better of her.

Having worked with many individuals with strokes or head injuries, I know that personality is a huge factor in how the person recovers. That, and family support, play very important roles in the recovery process. Mrs. B. is not going to take this lying down and she is going to fight to get better and to get back to her life as soon as possible. She is realistic about some of her abilities that have been affected. For example, she won't be able to drive anymore but she, in close collaboration with her family, has already come up with the idea of employing a driver. Her personality is going to play a huge role in the positive outcome of her recovery.

We can't change anyone's personality but knowing what a person is like does help in setting and reaching realistic rehabilitation goals. For some people, being able to speak and to be understood by family members is all they require. While for other people, the slightest slurring of a sound or word is painful to hear and they push themselves to improve their speech to be as close to perfect as possible.

Some people are determined to return to a fairly active social life and will take every opportunity to join a group, participate in an activity or share their story. While other people are happy to accept the changes their stroke has brought about and relax into a home-based life that is solitary but comfortable.

Everyone is different and certainly, very few people have such a powerful personality as Mrs. B. But, as a therapist, I rely greatly on finding out about an individual's personality and interests in order to direct and shape the therapy intervention. Certainly, interacting with someone who is willing to share their interests, hobbies, ideas and thoughts is easier to work with than someone who is reclusive, lazy or secretive. There again, it is up to me as a therapist to adapt to each personality style and to get the best results possible through our interaction. It might also explains why some therapists are not right for some patients and vice versa. You need to find the therapist that understands you and works well with you because not every therapist is the same, just like not every patient has the same personality or stroke.
 

There is no magic...

On occasion, I have walked into a room in which an inidividual with aphasia has been trying, unsuccessfully, to tell a family member or a caregiver something but the family member is not able to 'get' the message. And so in desperation, they utter the words, "Maybe the speech therapist can tell us what you are trying to say". They all turn to look expectantly at me as I enter the room and hope that I will be able to work out what the individual with aphasia is trying to say. There is an air of frustration and helplessness in the room as the family member tries to guess and the individual with aphasia tries emphatically to make his or her thoughts known.

But, there is no magic training that I have received that helps me to understand the jumbled messages and utterances that a person with aphasia tries effortfully to produce. Sadly, I do not possess a 'special' ability to comprehend gestures, sounds, jumbled words or utterances that are produced with so much effort. If there is any secret to deciphering the message presented by an individual with aphasia, it is as follows:

I take my time. I set aside everything that was planned and I listen. I let the person with aphasia realise that I want to know what he or she wants to tell me. I give them the space and the time to try and construct the message and together we try and work it out. I remove any time pressure and I provide as much support as possible to assist the person to get the message across.

And sometimes this works. Using a combination of guessing, keywords, gestures, pictures, and drawing on family structures, local and international events and everyday situations, we are able to piece together the message. And often it is so simple. We tend to complicate it.

Sometimes, however, it is a good idea to leave it until later. You can find yourselves going round in circles and the levels of frustration for all parties involved seem to get worse. In this instance, the likelihood of identifying the subject and reaching an understanding for all involved is less likely. This is a good time to recognise that everyone is a little frustrated by the break- down in communication and to suggest that the conversation should be put on hold for a few minutes or set aside for a time later in the day.

Often, having a slight diversion for a few minutes can just help everyone catch their breaths and settle down. Make a cup of tea, move from the wheelchair to the couch or change rooms and move to sit in the garden. Then the topic can be tackled again with a fresh perspective and, in many instances, you might find that it had already been suggested but in the heat of the interaction the message was overlooked.

We can get so caught up in the moment and trying to solve the issue when in actual fact the person just wanted to express his or her opinion on a topic or wanted to ask a question about something that has been bothering him. We can  make it more complicated than it is and so we lose track of the actual interaction the person is desperate to experience.

Let it be said that living with an individual with aphasia is not an easy task as you do not always have the time or opportunity to wait and set other activities or responsibilities aside. As a communication partner for an individual with aphasia it is essential to recognise that some conversations are more important than others and that these are the ones that need to be given time. Everyday events or issues can be dealt with quickly but there are some discussions or topics that, by their very nature, require more attention. In this instance, setting aside a good time for both the communication partner and the inidividual with aphasia, is necessary and might take some negotiation.

And when you do work out what the individual with aphasia was trying to tell you, it is magic! It is like helping someone to solve a puzzle that they cannot complete on their own. The essential piece of the puzzle when interacting with a person with aphasia is the approach taken by the communication partner. In isolation, the aphasic can express very little but in combination with a good communication partner, an aphasic person can speak volumes! 
 
Returning Home...
Returning home after a stroke or a head injury is not always easy. You might spend your time in hospital thinking about being in your own space again and looking forward to returning home. You feel that once you are at home everything will be better.

And a lot of things are better at home. You can wear your own clothes, sit in your own chair, sleep in your own bed. You can make your tea the way you like it and eat home-cooked meals again. You have your privacy and your own schedule and things are better.

But it is also difficult because you are different. As a result of the stroke or head injury, you are not able to do things the way you did before. Getting in to and out of bed now requires someone to help you, going to the toilet or washing your hair is something you can't do by yourself anymore. Suddenly, the reality starts to set in for both you and your family. Life has changed as a result of the stroke or head injury.

And it does not affect only you, but each member of your family too. Your family member can no longer pop out to the shops on a whim as you might need assistance at home. Your family member might need to help you get in to and out of bed or to move from one room to another. Their time is no longer their own as they need to assist you with your physical and communication changes.

Having a chat in the evenings, discussing an event or mulling over a worry is different now. Your family member might start to feel a little isolated or helpless at times as the reality of the effects of your injury start to set in. Your interactions are different now and more time and patience is now required.

It is not all doom and gloom though. Everyone can adapt and adjust to the new challenges and situation. Acknowledging that returning home is difficult is the first step. Following the advice and suggestions made by the therapists is the next step and realising that you are not alone is important.

Being at home is important for everyone involved and is a milestone along the path of recovery. Remember that a stroke or head injury is a journey and returning home is one of the stops along the way. Things will get better and the situation will continue to improve so hang in there and enjoy the special moments that are only possible when you are at home together!

    Claire Ashford

    Claire has assisted in the rehabilitation of many individuals who have experienced a stroke or head injury and over the years, these are some of the topics that individuals and families have raised.

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We have a special interest in treating individuals who experience communication and swallowing difficulties as a result of a stroke, traumatic brain injury or degenerative disorder.