Personailty

[StandByMe2]

Hello all,

I've been recently diagnosed with HSPG7. As well as all the physical symptoms has anyone had a change to a bit of their personality. I'm definitely less patient than I used to be.

[wobblybee]

I’m not diagnosed with SPG7 but….I can tell you that generally speaking most people will find ‘a change’ in their personality…no matter what type of ataxia.

The diagnosis itself ..takes some time to ‘digest’…most types of ataxia are rare, and quite often unheard of to many people, and then there’s realisation that symptoms are likely to progress.

It takes a lot of concentration and energy just to stay safe, and function as best as possible. This inevitably causes fatigue…no wonder we notice a change in personality.

🙂 There’s an upcoming Webinair (October) hosted by the National Ataxia Foundation…re SPG7…I’ll look for a link.

ataxia.org/event/all-about-...

[Tallguy101 in reply to wobblybee]

I was diagnosed with ataxia in 2007 which after 17 years was finally pinpointed to be sca48. As wobblybee said personality alters with all ataxias. I'm less than half the person I used to be, a lot of it is being unable to get the words out quick enough during conversation and being harder to understand so you just end up being quiet instead. I used to be confident, witty, funny etc... but now none of those. Also I think where I only go out twice a week and don't mix, I don't get much to talk about so have less to contribute to a conversation. Plus the huge amount of effort it takes moving around safely affects not only fatigue but lack of confidence when I fall which is at least once a week. Having said all that I'm very rarely down and manage to remain upbeat and laugh at myself too.

[StandByMe2 in reply to Tallguy101]

Thank you. I can definitely recognise myself in that!

[Kauri1 in reply to Tallguy101]

Thank you so much for this. I have been thinking of this all day and you have verbalised what I am thinking but were unable to put into words.i have had SCA6 for 5 years and feel just as you say. Thank you again.

[StandByMe2 in reply to wobblybee]

Many thanks Wobblybee.

[paul456]

I think any long term or permanent illness or injury is going to change who you are because simply your not who you were. It’s an interesting subject. I try to be the best of who I am on the day 😊.

Interesting post.

You take care my friend.

[StandByMe2 in reply to paul456]

Thanks

[weegiz12345]

Hi I agree with wobblybee and the tall guy ataxia changes your personality. I’ve aged since retiring four and a half years ago, the stress and worry of ataxia is the reason. I don’t go out much. Hairdressers once a week because I can’t wash my own hair. After retiring we were going to do all sorts and because of me we don’t do anything. Just glad we did all our travels before I got bad. I have one best friend and that’s it. My mum’s in a home 300 miles away so will never see her again, travelling is too much for me now. Went a couple of months ago for the last time, she’s very forgetful so won’t know if I don’t go again. My husband is the only one who gets how this disease affects you. If you don’t have ataxia you don’t get it. I go to the shops once a week but get online shopping for most stuff. Just for a wee walk but have to rest numerous because I get exhausted. I try to keep my legs going so have an exercise bike in the spare room which I use daily. I’m different since I worked not as talkative as I used to be because of my speech. Quieter and can get quite down. I know there’s people worse than me and that’s the only thing I think about. This site definitely helps though.

Louise. Xx

[StandByMe2 in reply to weegiz12345]

Thank you Louise.

[SCA3gettingup]

Definetly well explained Stand by me2. It's exactly the sensation I feel, and it' s not perceibed from outside, like poor coordination, difficulty to speech.Thank you very much to share it with us.

[Stacpolly]

Yes I am also diagnosed with HSPG7. Yes I am quicker to anger and quicker to cry. I have been offered Counselling by a specialist, which would suggest this is not directly attributable to my medical condition. But resulting from my work life, I have a low opinion of Councellors and have not taken them up on the offer. I am aware of it, cannot contol it, and feel a little guilty (re my nearest and dearest) that I am not doing anything about it. I do however exercise each day to hopefully slow the physical symptoms.

[StandByMe2 in reply to Stacpolly]

Thank you Stacpolly. If you like reading, a good book I've found helpful is called "The Happiness Trap". It's not HSP specific but it's all backed up by science. I've got it on audio-book & listen to it when I'm doing my stetches.