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Ataxia Support Network

So i have been writing about what has been going on with me


#1

I find that writing helps with the crushing depression I feel either from my prescription pills or this disease itself. I have a little blog that i started in July to give myself an outlet of sorts. The site is dolo23.com…tell me what you think.


#2

Dolo, I sure didn’t expect to be crying this morning, but after reading your blog, I couldn’t help it. The ataxia has sure made me a lot more emotional. Like you, I do my best to keep it in. I think it was just the recognition of shared feelings. It’s something I don’t experience too often. The rareness of this disease makes it difficult to connect with anyone on a day to day basis who will truly understand what you’re going through. But, that’s not their fault. My family loves and takes care of me very well but that doesn’t stop the feelings of loneliness every now and then.
I don’t read the ataxia forum very often mostly because it tends to depress me, but your blog really connected with me for some reason, probably because I’ve found myself saying/thinking all the same things. Keep it up. -Dave


#3

I am very glad to hear that my blog resonated with you in some way. This blog started out as an emotional release but as i wrote more and more i started to hope other people in similar situations would feel, if anything, that there is another real person dealing with the challenges of this disability. Thank you for your words it means alot that my little blog can reach and touch you .


#4

@Dolo23,

I was checking out LWA as I have not been on for a while and got an updated site email that spurred me on to re-visit!

Browsing about the site, as we do, I came across your (this) thread and went on to take a look at your blog. I must say I like the simple look of the blog and congratulate you on writing it.

Like you, I try to not let my ataxia(s) (and Fibromyalgia) define who I am or what I do. It can be difficult trying to get on with life due to the obstacles in place associated with health conditions - especially when such are rare or ‘invisible’ to others. Trying to keep a happy face or pleasant demeanor when others simply do not understand our problems or are unwilling to believe we have them can be irritating at best. We must try to keep things ‘nice’ though as doing otherwise can lead to all manner of issues that can negatively affect our physical and mental well being.

Reading your blog, I could not help but think ‘That could be me writing the same blog!’ as many of the things you relate are true of me also. I have thought of writing a blog but resist as, like you, I tend to be a reserved person. Instead I occassionally write short stories or (very bad - almost Vogon) poetry - for private consumption!

Any who, keep up the good work on the blog and try not to let things get at you or make you feel down. Kindest regards from me to you.


#5

Always glad to hear feedback from people in similar situations. It means that when i struggle there are others struggling as well. It makes me feel both sad and happy for that fact. Not being alone is a powerful feeling. Thank you for your kind words of encouragement I appreciate them.


#6

Hi, I have just read your blog and you have put into words exactly how I feel ( and I expect a lot of others on this site)
The feeling of an uphill struggle that we work at but can’t improve.
A recent post seems to offer something positive,so let’s hope for the best.
Stay in touch Very best wishes xx


#7

No problem!

I do not write on LWA so much now but do read there from time to time!

I know about the feeling good and bad when reading about others that have similar problems to us. I think that it’s good to talk (read/write) though! It’s even better to realise we are not alone.:slight_smile:


#8

Again I read of the familiar happenings of those who cope with Ataxia. I try to keep my feelings to myself so not to scare loved ones with my pain. Lately I have been so overwhelmed with how my family will accept the changes I have coming soon.
Lately I see me closer to being stuck in a wheel chair for the rest of my life. My heart goes out to those who are there now. I know it’s not the end of life but to me it is the end of my freedom. I’ve given up on my driving and found that when a person does this you can forget about ever going where you would like to go. I am seriously close to giving up on my crafts. No one wants to have to clean up with the vaccum or put up with the mess of a crafter. I am getting to the point in my life that I will never have a say so to where or when, I need to voice what I would like to do or go. It is the end of my time for freedom. Although I am thankful for being able to still live life.
Now to make things worse it has been determined that my younger brother and sister have been diagnosed with the same as I. We all three now have cerebellum ataxia and it is hereditary. This leaves my two older sisters so far not showing any sign as of yet.
At this point in my life I fall a lot due to my eyes casing my head to spin. At night in a car if I leave my eyes open the other car lights are bouncing up and down making me want to keep my eyes closed. It is so hard to understand how life can take such a turn in just a short time.
So many other health issues makes this even harder to keep a positive mind. I have found that so many think they are doctors always trying to make your life easier but yet they fail to realize it’s not happening to them. All advice given is nice they care but, to me If I could I want to ask them to not give no more advice.
At this point in my life I can only keep a clear mind on knowing at least I am still here I just wonder once I can’t do for myself will others be here for me always? Will I be a huge burden and they will soon recent me? I am so upset inside for all coming at me. I seriously don’t want to take away from some ones life to watch over me. It is so hard to thing there is no solution to my thoughts. Writing my fears and thoughts down still gives answers it just gives me the chance to vent.
Besides I don’t know of anyone who has the true answers to our situation I can only be like many others with this problem. We have to believe we can only cope with what ever comes to us and keep our minds thinking it is what it is and we will cope day by day until it is over someday. But I do know that we never asked to have this ataxia and that we get treated as good as if it happened to all eventually. If only each individual knew how it hurts to have to make each change in our lives because there is no cure. If it were you this is happening to there’s no doubt in my mind you would want to be understood and treated with high respect. If only I knew people were reading what I write. I can’t be the only one feeling scared and alone sometimes as if people have no idea. So to all of you who are feeling scared and upset inside but keep it to yourselves I want you to know I totally understand and I can only say this. We have but one choice and that is to keep remembering that it is what it is and we have no choice but to accept what ever comes about. I can’t even have a good cry over things because so much has happened now that my tears have disappeared. My mind is so overwhelmed with sadness for my family it hurts so much inside to think I will become a big burden. I have always been the one who helped where from here is my life turning. How would I ever be there for anyone again. And one other thing is WHEN WILL THERE BE A CURE???


#9

I know whaf you mean i have given up on driving already and i also share your fears. All i was told was maybe not look to the future as much take each day as it comes. This is a progressive disease although nothing is really known about how it is progressed. With me my eyes went first then the balance issues. I had to stop playing sports and being active all togetger because it was difficult to move my body. Then came the tremors and weakness in knees followed by knee pain. As i understand it this is different for a lot of people with sca7. And technically i am still in the early stages. But as far as a cure is converned there is a lot of promising information out and doctors are doing tests and research in SCA treatment. In the next couple years we should have something we can take or use to get better. This is hopeful thinking by me though many people still think we are at least a decade away.


#10

Just before Christmas I picked up a 'bug’:roll_eyes: First it was a heavy cold, then it turned into extreme lethargy, as if ataxia fatigue isn’t enough​:smirk:
Here we are, 4 January, and I feel I’m living in Ground Hog Day. Our immune systems don’t like 'bugs’:wink:xB


#11

:frowning: im sorry that happened to you. I know what its like. Even before my diagnosis i would get sick for almost 2 weeks at a time . Now that i know what i know about myself i take extra precaution. Glad youre feeling better!


#12

You are a good writer, and as a ex-wife to someone who has just been diagnosed it is very helpful for me to read and understand emotions, as well as physically what is happening throughout the stages of this disease. I would encourage you to please keep writing! It is an excellent way for you to release your feelings and thoughts and there are so many of us that need to understand. My thoughts are with you.


#13

Thank you for the encouragement it is always welcomed.


#14

Does having ataxia make you more suseptible?


#15

Some people with ataxia have a weakened immune system.
Usually this is associated with those diagnosed with Ataxia-Telangiectasia Syndrome (A-T), also known as Louis-Bar Syndrome.

Although, generally speaking, many of us do feel we are more susceptible to picking up colds etc. Or, just generally feeling ‘under the weather’.

:slightly_smiling_face:xB


#16

You know what Dolo I am a positive person with a great way of looking at life. But as much as I am sounding in a Negative way I lately find myself saying enough is enough. Way to many health issues I never dreamed would happen to me.
Can you tell I am having a really bad night. We all have bad days sooner or later. So from here I will not go on and on. Anyway [please have a wonderful New Year.


#17

Hi. there. I just wanted to let you know that I also cried when I read your blog. I’ve been thinking of starting one myself – really just to cope with the emotions. I am 58 and was diagnosed last month with Idiopathic Late Onset Cerebellar Ataxia. It took two years and I have pretty much withdrawn from social situations. It has totally changed the way I view sick or disabled people. I’ve lost my best friend due to the moodiness/emotional liability and have also been very depressed as, one by one, the treatable diagnoses have been ruled out. I definitely will use your description of ataxia as a “brain disease.” Keep writing!


#18

I became depressed when I suddenly became dependent instead of the independent person I have always been. In my case,nothing was progressive but all of a sudden I couldn’t walk, talk well, see well, drive, type, or write. Fortunately, my sister, a doctor, recognized my symptoms and started me on anti-depressants which made a big difference. I encourage everyone who is depressed to try to get it treated. I feel so much better now, it is certainly well worth it.


#20

If anyone is depressed, he or she should get treatment for it. There is no reason to be more miserable as if we didn’t have enough problems to begin with. The place to start is your family doctor or really any doctor. It is possible to get medication or talk therapy, or both. There are lots of medications, so if one does not work well, another can. Something to remember is that side effects start right away, but you probably will not notice that you are feeling better for about three weeks. My only side effect is dry mouth, though some men on some drugs report ereceile problems. Feeling suicidal can be considered an emergency. Some symptoms of depression is problems with either eating or sleeping-either too much or too little, feeling worthless and not enjoying anything.


#21

Well i am already on medocation and therapy adding MORE antidepressants isnt good for my body. I tried last year and it had a negative effect on me. The therapy isnt really helping cause i have brought up my depression before and before she dismissed them as part of this disease we barely scratched the surface. So it feels like im stuck.