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Ataxia Support Network

Making Use of Up Time


#1

Making Use of Up Time

My generation is well into their 70’s almost into our 80’s. We have experienced many downtime situations that have required us to stop our usual routine either to recuperate from a sickness or surgery or to help someone. Many like me are disabled and drive a four-wheeled rollator instead of a motor vehicle.

The reason I am telling you this is because we can use our up time to accomplish some good. I am an independent author. I published my first three books, Two Stepped Out For Him, The Darkness Before The Dawn and The Adventures of Little Buddy and Grizz, through publishers starting in 2005. Since then I have self-published all my books as a hobby. I have written poetry and many articles for anyone and everyone over the years because that is what I love to do. I have 20 paperbacks on Amazon and 21 e-books on my website through PayHip. Now disabled at 79 with Ataxia I find it a blessing to be able to write and continue my hobby publishing my writings as blogs, paperbacks, and e-books.

When my mind and limbs work I love to be on my computer. I don’t have a new computer, I use an HP Compaq system powered with windows 10. I don’t like to use laptops or the new complicated computers. When my fingers allow me to type I use the EZSee keyboard I find the keys which are white larger and easier to use. I use the free Grammarly for my editing. I like to use easy words.

For the last thirteen years, I feel God has given me a gift to write. Starting with cancer and other life-threatening health issues God has always been there for me and I have great stories to tell. Any faith-based reader or writer knows what I am talking about. Now it is time for a change. With my health issues progressing I have now left Facebook and Twitter and will concentrate on writing only on my website at Godafterglow.net and continue to write paperback books and e-books. I still consider my writings as a hobby.

When you read something that jumps out like a scripture reading and God whispers to your heart. He opens a door and speaks through the story to the reader right where they are in life. I love to use my imagination to write fiction and nonfiction paperbacks and e-books about how God can work in peoples lives while being open to all His possibilities. Some stories stay with us forever whether they are faith-based, western, everyday stories or poems. Doing this has given me a better attitude and a better understanding of life. We make better decisions and we don’t worry about the future. The present everyday happenings are enough to maintain.


#2

Excuse my ignorance, but I am from England, you are referring to a 4wheel rollator, do you mean a motability scooter?

You are right, using your time correctly, regardless a degree of your disability…

I am 41, only starting up on a sca2 journey, doing my own cleaning, can do it STILL…

I am not religious, but whatever works for you, stick to it…

My paternal grandma and I suspect her dad had sca2, judging by her “weird” falls, later on drinking…to cover it up…I inherited it after them…But exercise like mad, so my muscles, work their best…using 4wheel walker outside, only up to max 15min.,as my wrists seize up if longer…it is all paying up…


#3

Hi Ladybird, it is just a regular rollator. I went from one cane to two canes, to a wheelchair and because my ataxia is episodic I was better for a while didn’t need the wheelchair. Now it is progressing more and I do not walk without my rollator. When my rollator first arrived I sent a picture out to some friends telling them about my new set of wheels. Have a great day


#4

Amen! Gods love is amazing!


#5

Hi Doggielover, yes God is great! Thanks for reading my post. Have a great day!


#6

Beautiful testimony! Thank you for sharing as it encourages each of us. I’m a caregiver to my husband of 47 years. He has had symptoms of EA2 (Episodic Ataxia 2) for 10 years is is currently on a rolator full time. My current prayers are for him to accept that he needs more from time to time and say “yes” to a motorized chair. Would appreciate your agreement. GOD is amazing. My husband’s faith is stronger than ever. We pray expectantly of how GOD is using our current circumstance, and be glorified when his complete healing does manifest.


#7

Hi Zoe, thanks for sharing. My wife of 50 years is my caregiver I recently gave up my Bible study class at church. I was teaching a class for Senior Women (a lot of wisdom there) I had too much of a problem talking. That was difficult for me I love to talk. Now I sort of live in seclusion. I believe God is using us to communicate with others. We now certainly have the time to do so. I have learned it takes us, men, longer to understand there are many things we can no longer do as we get older and with our health issues. That is where women have to have patience with us men. There is no doubt that God is using you and your husband to further His work. Take care and have a great day!


#8

Hi there so glad I found this site… yes I do believe in God or that the universe is setting me out on a journey I thought I would never take? I am 53 look younger feel in my mind I’m really young lol… my issue is I’m still undiagnosed… the doctor’s call it “functional gait disorder” which means they don’t have a clue… I have been using a rolator… but it has it’s limits like going to the beach the wheels do not like sand! so I discovered this site out of Canada called “sidestix” created by a woman who became an amputee… they are expensive and of course insurance won’t pay for anything “good” or healthy for us… any way I have not ordered yet… because trying to order on line would not let me put in exact measurments… today being Saturday… I called and left message with company… rather place my order with a person… since again expensive… but I think for someone like me who is undiagonosed and besides ambualtion issues… I am praying this will give me back some independence… thank you for letting me share… once I receive “device” I will post wether Yay or Nay!!


#9

“Gait Disorder” is a generic term used like “coughing”, “sneezing” or “rash”. They slap on the word “functional”, when they don’t know the etiology of the disorder. Did you have any genetic testing? I was told by UVA that I have “gait disorder”. Until Johns Hopkins did genetic testing and diagnosed as SCA-6


#10

interesting? so what does that mean you have? I know I have had every test under the sun… including lyme… but I now here there are different types of lyme test… seeing a new doctor “again” lol… we’ll see what she will do or say or try to subscribe me…


#11

Hi there I just googled SCA-6 … no I do not have those symptoms… so that is not it…