[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5324

Hi Anna,

Thank you for your message. I haven’t been on the site for a while and tried replying by my email address without going through the DNA site.

I am so pleased to see the number of members who responded to your situation.

Please email me at w.pearson8@bigpond.com and we can discuss the central coast a bit more.

Kind regards
Wayne

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5134

Hi,
What an absolutely horrific and convoluted journey you have had to reach your diagnosis of dystonia. However, on the brighter side – if there is one – they did get the Widow Maker and some other problems on the the journey. I wish you all the best now you have got your diagnosis and hope that once you see a specialist, life will improve for you.

There is also another wonderful group – a private Facebook Group – Australia Dystonia Support Group. Both these groups have helped me on those very dark days. The people who run both these groups are amazing.

Kind regards,
Wayne Pearson

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4009

Hi Robyn,

I just watched the short You Tube clip you and Peter had made. I was incredibly moved by that clip and I thank you and Peter for making it and putting cervical dystonia out there.

Kind regards
Wayne

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3537

Hi Robyn,

Thanks for your reply. I am still making my way through the posts on the members forum, so I obviously haven’t caught up with your story yet. I live on the Central Coast in NSW and obviously you’re probably in NSW as well, if your neurologist is at St Vincents.

Kind regards
Wayne

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3512

Hi Denise,

I was so pleased to receive your post and as you wrote, it certainly makes a huge difference being able to connect with others suffering the same disease. The sense of isolation and fear of the unknown becomes much less of an issue. Joining DNA has made a big difference to my life as well.

I was extremely fortunate in having a good GP who wasted no time in referring me to my neurologist and I was diagnosed in early 2017. So far, I am up to 11 Botox injections and they are working well. Unfortunately, my CD is complicated by degenerative spine disease as well. My neurosurgeon is now looking at cervical surgery to release the trapped nerves there. I have had the maximum number of steroid injections into my cervical spine, but I am still hoping I can avoid this surgery.

The fatigue is really something difficult to manage and because CD is a disease that is not something others can see, it makes it hard for those close to you to understand. I am also finding my concentration is diminished and I am still trying to get through all the posts on the members forum.

Again, thank you for your post and I look forward to hearing from you again.

Kind regards
Wayne

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3511

Hi Robyn,
Thanks for your reply. Trust us to have the most difficult to diagnose and treat of the dystonias. So far, I have been very fortunate and am well controlled with my current regime. How rare is it to develop antibodies to Botox? I am so pleased DBS has given you back your life as well you know how debilitating this disease can be.

I am not surprised by the number of referrals your neurologist has had. Everybody would be lining up for such a quick, non-invasive treatment. We’ll have to sit it out until they get to the dystonias.

Look forward to hearing from you again.

Kind regards,
Wayne

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3401

Hi Robyn,

Many thanks for your reply. It is greatly appreciated. You and your daughter are obviously in a worse situation than I am. Two people in the one family battling the same disease must be incredibly difficult. I have done some research on DBS and it’s an option, but I am not convinced having nursed several people throughout my career who had had DBS. Obviously, these surgical interventions are always being refined and there was a TV news item a couple of weeks ago about a man with Parkinsons who had this new surgical technique at St Vincent’s in Sydney. The cost, however, like all things new is prohibitive – $30K.

Certainly reading others’ stories has been a great help since joining DNA. I live on the Central Coast in NSW and my nearest support group is Newcastle. That’s a 2 hour drive from home and driving long distances for me now is just too tiring.

I wish we could get more people interested in sharing and updating their journey with dystonia. Sometimes, I don’t think we realise how helpful sharing our stories is.

Take care and kind regards
Wayne.

[w.pearson8@bigpond.com]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3369

Hi,
My name is Kenneth Pearson, known as Wayne. I was fortunate in being referred to a neurologist in February 2017 and was diagnosed with cervical dystonia. My neurologist specialises in movement disorders.

I first had uncontrollable tremor in both my hands. I started Botox soon after diagnosis and it has helped greatly with my tremors. I now have developed tremor in both my legs and some muscle weakness in the legs. I feel the disease is progressing because I now have that awful debilitating fatigue.

My medications are Gabapentin and Diazepam and most of the time these medications seem to help.

Probably the most distressing part of this disease for me is the unknown because so little is know about the disease and it’s prognosis. What frightens me is that there is no prognosis and I don’t know this disease will progress. Sometimes, I just feel so isolated and fearful of the future.

Well, that’s me. Would love to hear from others with similar fears.

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