Quantcast

Ataxia Support Network

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


#22

As always, once one is being treated, it makes sense to stick with it unless you feel like that person is not helping you. You may be there if you feel depression is being dismissed. I think that even though the underlying disease can not be treated, it does make sense to treat treatable symptoms. For example, even though the ataxia that caused me to fall is untreatable, it made lots of sense to treat the resulting broken hip.


#23

To be honest, I’d reached an all time low by the time I got diagnosed, and it lasted beyond diagnosis.

My Neurologist said I would benefit from a mild antidepressant, I’ve taken 50mg daily of Sertralene since 2011 and it has helped🙂

For several years, I’d gradually cut myself off from communicating socially other people, I lived very much in my head with a vicious circle of thoughts.

Eventually, I reached out to a Women’s Support Group. Each meeting was led by a Counsellor, it was a small group, about 6 of us, we all had different reasons for being there but we quickly bonded🙂 It was totally confidential, what was said in the room, stayed there.

I’m so thankful I somehow found the strength to find something that worked for me, just giving voice to all the pentup frustration, and it wasn’t all ataxia related, was a relief.

One to one therapy doesn’t work for me, it took years for me to realise there was another option🙂xB


#24

Beryl, I’m so glad you found what works for you. We are both examples of “Better living through chemistry”. I made the mistake of going off my antidepressants once I was feeling better and because I didn’t like the dry mouth side effect. My husband said that I was rather difficult then and the old negative feelings came back. I will not make that error again! Fortunately I was never suicidal or it could have been worse.


#25

Thank you Dolo. Your blog is one of the first things I’ve read since being approved to be on this site. You are helping people: you have helped me.


#26

And thank you for sharing i appreciate it.


#27

Vickie, I am reading what you write. I have the same fears and emotions. We are not alone.


#28

Hi Catherine. I have also withdrawn from social situations and have got into some pretty upsetting emotional scenes. I understand what you’re talking about.


#29

So I’m struggling with what to tell people. They are “shocked” when they see me, and I just don’t know what to say. Throughout the long time it took for the non-diagnosis of ILOCA, I was told that “nobody believed” me. Although I really don’t care, I have to say something. I find this part particularly difficult because I’ve spent so much time concealing my illness. Maybe I’m just trying to pretend I can hold onto my old life with lots of friends, etc., but they’re disappearing. One sweet friend offered to travel with me to NYC to visit my daughter, but all I can think about is how much trouble it will be for everyone since I have trouble walking and talking. Her husband even offered a driver.


#30

Have you tried to talk to your friends? I’m not sure they understand the isolation,


#31

It’s complicated. This disease we have, being so rare and progressive not to mention being so likely to pass on to the next generations and incurable, makes me mute about talking about it. It is a mega-downer subject. I have plenty of opportunity to be social, since hubby excels at it. I interact with my Amazon parrots, my sun conures, my cockatiel, and my family of parakeets. They are intelligent, funny, and loving.


#32

I don’t travel. I’ve lost the desire to. I already live in a heavenly place–Oregon. If my grown children want to visit, they have to come here. I know what you mean about “shocked.” My 4-years’ older brother visited last year against my wishes since I really wasn’t up to it having been hospitalized for 2 little strokes a month before. He would rock back and forth while seated because of the pain refusing to take even an aspirin. I was very shocked, horrified, and angry about how badly he walked because no one, not him nor his wife told me beforehand, just sprung it on me, knowing I suffer similarly. He didn’t even bring a cane with him. I had bought theater tickets and baseball tickets not having a clue. He lives in NC. We are now estranged. He made all sorts of demands while he was here, really inconsiderate and I tire so easily. I know I must sound terrible. I have been diagnosed with PTSD from my father’s abuse and it didn’t help that my brother resembles him.


#33

I am so sorry that you have PTSD on top of the ataxia. I might get a dog because I’m here alone most of the time, maybe a rescue.


#34

What a great idea Catherine. My son has a beloved black lab for PTSD.

My Amazons are Terrific company. We go back and forth all day. One of them sneezes and coughs and laughs. He says “See you later and Hello there.” He makes me laugh all day long. Pretty neat, huh. It’s weird tonight. I’ve had some of our in-house beer tonight and what I’m thinking is this disease is like an SNL sketch. I mean, REALLY? Progressive? No treatment? Hereditary in my case? Makes you walk like a zombie? Very rare? Affects your eyes? Emotions? REALLY? This is nuts. We all die anyway. FU fate! I laugh in your face. You can’t upset me anymore. When I lost my father. That was the ultimate.


#35

Catherine_Moss_Grave
http://www.livingwithataxia.org/users/catherine_moss_grave
April 11

I am so sorry that you have PTSD on top of the ataxia. I might get a dog
because I’m here alone most of the time, maybe a rescue.

Visit Topic
http://www.livingwithataxia.org/t/so-i-have-been-writing-about-what-has-been-going-on-with-me/5248/33
or reply to this email to respond.

In Reply To
Oreberry http://www.livingwithataxia.org/users/oreberry
April 11
I don’t travel. I’ve lost the desire to. I already live in a heavenly
place–Oregon. If my grown children want to visit, they have to come here.
I know what you mean about “shocked.” My 4-years’ older brother visited
last year against my wishes since I really wasn’t up to it having been
hospitalized…

Visit Topic
http://www.livingwithataxia.org/t/so-i-have-been-writing-about-what-has-been-going-on-with-me/5248/33
or reply to this email to respond.

To unsubscribe from these emails, click here
http://www.livingwithataxia.org/email/unsubscribe/436ca1e79af7fe282229469d8d4f77edd09ed0789abe7a5b91bff831a3151736
.


#36

This format is a bit confusing. I hope you do get a rescue dog Catherine. Speaking for myself, I find my parrots are better company than humans.


#37

They sound funny! I think I could use some entertainment since I’m in frustrated most of the time!


#38

I don’t “like” that you’re frustrated. I’ll mention what keeps me sane. It’s very corny but I imagine I’m in London during the Blitz, never knowing where the next bomb will hit and the Queen just said, “Keep calm and carry on.”


#39

I like to talk with you using email, will that be ok? My email address is ■■■■■■■■■■■■■■■■■■■■■■■ when you answer me, thank you.


#40

Hi morlando.
email addresses and phone numbers are now hidden automatically to protect members’ online privacy.
However you can easily share contact information via a private message.
Hope this helps,
Christina from Moderator Support