Last Wednesday evening the York Harbor Inn opened its heartwarming doors to the Blue Light Autism Awareness Fundraiser. The event was complete with food, drinks, dancing, open auction and a silent auction. Yet these were all invisible to the love and understanding in the room. Everyone had a wonderful time; the staff who volunteered and made everyone feel at home, the parents and their children were relaxed and having fun and most important funds were raised for Autism research.
As a volunteer the event made me realized your experience; a stroke; aphasia; brain injury; people are willing to support you and make you feel less isolated and learn to enjoy life again. At some point there will be an Aphasia Awareness event and I can only hope is will be as successful as the Autism fundraiser.
There are times during the recover of a stroke, brain injury and aphasia you feel isolated. A quiet hug can lift our spirits and help us feel better. I remember sitting on the couch with my mother, suffering from cancer, holding hands, without conversation, just that human touch that says I understand and I love you. Survivors of a stroke, brain injury and the frustration of aphasia – sometimes just need a HUG.
Aphasia is the result of a stroke or brain injury. The Brain Injury of Massachusetts offers some wonderful ideas and coping skills.
Aphasia is a complex condition. It affects each person differently and may be hardly noticeable or very severe. A person with Aphasia may find that their communication difficulties can change from day-to-day or even hour to hour. They are likely to be worse when tired, unwell or under pressure.
People with Aphasia have described the experience as being:
“locked inside my own head”
“everything been washed from my brain”
Having Aphasia is often isolating and extremely frustrating. It usually results in loss of work for people under retirement age, with loss of status, social contact and financial security. Roles within the family may change, and friendships and close relationships come under great strain.
Will it improve? Each individual will have a different set of problems and will achieve a different level of recovery. It is impossible to predict how much language the person will regain.
Having the confidence to use whatever language skills remain seems to be even more important than being able to find all the right words. With practice and support, even people with severe Aphasia can continue to express their needs, choices and unique personality.
When you are talking with a person with Aphasia:
- Choose a quiet place with few distractions if possible e.g. (background noise and more than one person speaking at once can make it very hard to follow a conversation).
- Gain and maintain eye contact before starting to speak. This will ensure that facial expressions and gestures will give a lot of clues about the message you are trying to get across, even if he/she finds the words hard to follow.
- Allow plenty of time for him/her to absorb what you have said and to make his/her response.
- Talk with a normal voice but at a slightly slower speed than usual.
- Give only one piece of information at a time.
- Use short sentences.
- Check you have both understood. Don’t pretend you have understood when you haven’t!
- Use familiar words and phrases.
- Make it clear if you are changing the subject.
- Have a pen and paper handy, as some people can read or write better than they can speak. Sometimes drawing the message or using other ‘props’ (pictures, photographs and real objects) can help.
- It is easier to answer questions with a “Yes” or “No” answer (closed questions) than questions that need a fuller answer (open questions). For example, “Do you want a cup of tea?” rather than, “What would you like to drink?”
- It is quite common for people with Aphasia to mix related words when they speak (such as ‘yes’ and ‘no’ or ‘he’ and ‘she’). Sometimes it can help to use gestures (thumbs up or down) or point to a symbol (tick, cross, smiley face, unhappy face) to check the meaning.
- Avoid shouting, interrupting, patronising or ignoring the person with Aphasia. Many people with Aphasia have had the experience of being treated as “stupid”, “drunk” or “mad”, which makes living with a language impairment even harder to deal with.
Good new is that there are new websites that offer tools to cope with aphasia. Hope, Humor and Hard work will improve our disorder.
Just a friendly reminder to be careful with new medications. New medications can take as long as six weeks before a reaction can occur. These reactions can be dangerous; causing fainting; severe dehydration; heart palpitations; fatigue and change in vision. If these or any other changes occur while on the new medication call your doctor or 911 to receive the appropriate care.
This winter has been hard on everyone, especially the snow and ice. We need to be careful, very careful. Some suggestions to stay save:
- Ask for help or hire someone to plow or shovel the snow – you may feel good BUT these can be dangerous resulting in a fall or a heart attack.
- Call your Town Hall for any assistance you made need – heating, electricity, a senior center to stay warm. Ask them to check your carbon monoxide system is working properly. Be careful with the first smell of gas – go to your neighbor and call 911.
- Ask your neighbor, when they go to the store, to pick up a few things you need. If you are computer friendly consider ordering on-line with delivery.
- Make sure you have all the medicines you need. If you run out – call the pharmacy and have a friend get them for you. You may be in your home for a few days . Stay busy with hobbies, cooking or anything you enjoy this will help deal with Cabin Fever and avoid depression.
- MOST IMPORTANT KEEP YOUR MEDICATION AND APHASIA CARD WITH YOU AT ALL TIMES !
Stay Safe, Keep Warm, and God Bless!
SNOW, SNOW, SNOW, SNOW! FRUSTRATION, FRUSTRATION, FRUSTRATION! CABIN FEVER, FEELING ISOLATED AND ANXIOUS. Most people have these feelings especially stroke survivors and people with aphasia. Most aphasiacs have trouble speaking on the phone when nervous or upset which can make these feelings exasperated.
Stop, slow down and go back to the basics. What to do to feel better?
1. Call your neighbor and invite them to your home for a cup of tea and help with anything you need done. Trust me they will be glad to help and will feel better about themselves. This is important especially for medications. Be sure you have enough for four or five days.
2. Be sure to wear your medical alert device.
3. Use the coping skills you learned in rehabilitation.
4. If you need some groceries ask your neighbor to pick them up for you or if you can use the computer order online for delivery I do this frequently – they will bring the food into your home – usually kitchen table..
5. Do not attempt to shovel or walk on the snow and ice alone, ask the person driving to help you. Your walking device can be dangerous in the snow.
6. Watch television, a DVD, knit mittens for your family, crochet a small chair throw, as a gift for your neighbor. My favorite is to work on word puzzles.
7. Read a good book “Finding My Voice with Aphasia”, ” The Unbroken” or a whatever genre you enjoy.
8. Most importantly stay safe but if you are not feeling well or unusual call 911
Remember safety first, take care of yourself and ask for help
He stood 6 feet 6 inches tall but was a gentle man. He came from Ireland in the 1940’s yet he fought for the United States during the war. He married and had ten children. He worked hard, ten to fourteen hours a day to feed his family and to put his children through school and college. Yet, he never complained “No one would listen anyway” he would say. “You do what you have to do and that’s all you can do” was his favorite expression. He was married over sixty years to a woman with a heart of gold and the strength to bring up their ten children together. Through the years he worked long hours and he and his wife watched his children grow and marry. Their home was filled with happiness and love. Suddenly it all came to a stop – the gentle giant had a massive stroke on his left side. Therapy was extensive and gave him hope. When another stroke survivor called him, his response was ‘welcome to the club girl and don’t let it get you down just work hard and never give up.’ As the years passed he became weaker. We lost the gentle, hard working father and friend this week after a nine-year struggle with his stroke. He was 93 years old and fought everyday to salvage his body from his stroke.
‘ just work hard and never give up.’