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DAILY LIVING TIPS
PLEASE FEEL FREE TO TELL US OF ANY TIPS YOU HAVE FOUND USEFUL :
( THESE ARE JUST IDEAS BUT EVERYONE'S DIFFERENT )
When it feels as if you cannot swallow -
Imagine that you have a lolly on the front of your tongue....suck it between the tongue and the front roof of your mouth....this brings almost immediate relief.
Try to relax and know that your body will kick in it's normal responses; when it happens the first few times it is easy to feel a sense of panic.
Ask your doctor if you can be referred to a speech pathologist....I have been visited by a community health speech pathologist at home as my doctor wrote a referral. She tested the level of ataxia in swallowing and is going to put together a kit of foods to avoid eating because of the type of chewing involved plus tongue and mouth exercises that will help. The visits by the community speech pathologist are 'free' as I have a pension concession card.
When you are out and it is buffet style - say I have a neurological disease or Spino Cerebella Ataxia or Cerebellar Atrophy or what you feel comfortable with and have difficulty walking with a plate of food....ask if someone can fill your plate for you....most people are kind and helpful when you explain your difficulties. You will meet the occasional difficult person...IT IS THEIR PROBLEM not yours!
Phone ahead and explain to your host that there are certain foods that you have difficulty eating; maybe a few hints on changes to the menu may be in order.
I go to the same coffee place every time; they know me and understand when I make a mess of the scones on the table and sometimes the many crumbs on the floor....if I drop anything e.g. I have sent scones flying through the air...they will get me a fresh one...no trouble at all. Also, they always find time to chat to me....one day I looked a bit down and the young waiter made a smiley face with the cream on top of the coffee because he said 'it looks like you need cheering up.' It made me smile.
I garden as a form of therapy; it is a slow process but a little bit often can create something beautiful in the long run. I visit the same nursery; they will pot the plant free of charge (I buy the plant and pot); they walk around with me and gather what I need, take it to the check out and then put it in my car. Recently an attendant approached me and asked me if I could help her get up and running a Community Education Program on gardening for people with disabilities. I was thrilled at being asked and said 'YES!'
I was biting my tongue and mouth often when I cleaned my teeth with a manual toothbrush; the dentist suggested an electric toothbrush. I use it all the time and I now don't bite my tongue.
The speech pathologist advised me to take my time eating, even if it is going to take an hour to eat the meal. Also, not to talk while I eat. That is almost impossible with me as I talk the leg of an iron pot and rarely come up for air.
I have difficulty opening and closing my handbag; I was leaving it open when I shop as I felt some shoppers and checkout attendants become impatient with my slowness. The community physio said a big 'NO', it is their problem not yours! Keep yourself safe and don't allow yourself to become vulnerable.
As Drs recommend, sadly walking sticks & frames ARE "badges of honour" & will earn you more understanding in the community
For swallowing and choking difficulties, PLEASE see a speech therapist, but carrying water always, not talking whilst eating, and swallowing with head down, all help
Walking duck-footed ( on your heels, with toes in the air ) may help prevent tripping a little
When carrying objects, lids are a great help to avoid spillage
For sleeping disorders, PLEASE see a Specialist, but many find "Valerian" herb, 2g / night is a great natural herb muscle and nerve relaxant
If you "stab" your toes often, dark felt attached to the base of furniture can soften the blow
In the shower holding onto slippery soap or dropping the shampoo bottle can be a hassle. There is a very easy to install (it basically sticks on with special supplied goo) dispenser that can ease the problem. You can get them online from The Dispenser or you can buy them from Bunnings stores. They come in different varieties, 1, 2, 3, or 4 dispensers in each unit. I've got them in the shower and also a single one over the hand basin and they really do work!
© Spinocerebellar Ataxia Australia Inc