16 years on from diagnosis

[aitchsee]

Hi folks,

(I hope it's appropriate to post this here - my apologies if not - I'm new to the site and I thought this might just help someone...)

I was diagnosed 16 years ago. In 2002 I was having falls and finding it awkward to place my feet but I never saw the diagnosis coming. I was just turning 23 and it was the most horrific shock.

Things progressed for about 6 years and I've remained at this stage ever since. I am able to take a few steps holding onto someone. I can't raise my arms or use my hands, but I can speak (although a wee bit slurred). I can eat, drink and breathe on my own, though they are affected a bit. I've never taken any medication. I don't really think about or spend time on ALS (although initially I did a lot of research). That's probably why I've never joined a forum like this. That isn't to in any way disrespect the help and support of forums, it's just something I didn't personally feel drawn to from the start.

I am a huge believer in attitudinal health and healing. When first diagnosed I was lucky enough to read 'Love, Medicine and Miracles' by Bernie Siegel MD which really put some hope in my heart, especially as it brought to my attention Evy McDonald who reversed her ALS! A couple of years later I read 'Power vs Force' by the late Dr David R Hawkins. This book completely changed my life, forever. Another of Dr Hawkins' that is slightly more accessible is 'Letting Go : The Pathway of Surrender'. And it isn't a case of 'read this and you'll get better'...it was after reading them that that's when the hard work began! And it's just what worked for me. I'm a far happier person now than I was before ALS and I'm very grateful for it. That's not to say that it isn't tough some days because it is, but the illness has taught me so so much and helped me so much that I can't honestly say I wish it hadn't happened.

Best wishes!

Hannah

 

[wishmobbing]

Hi Hannah, welcome to the forum!
I'm very happy to hear about your slow to stopped progression and that you can see so much positive stuff through the disease.
I wouldn't have needed for my boyfriend to get sick just to see the value of friends, family and even strangers. The motto was Carpe f**ing diem from the get go. Well...

I hope for you to at least live an epic Hawking-sized life-span!

 

[KarenNWendyn]

Thanks for sharing, Hannah.

I’m trying to view myself as someone living with a disability rather than as someone who is dying. Your post is along those lines as well.

Heck, we're all dying. Nobody gets out of this alive. People who are basically healthy and feel well just don’t think about the dying part so much. The more disabled or uncomfortable one is, the more one thinks about it, and the more work it takes to shift one’s attitude. That’s really what it is — an attitude shift. And it can take a huge amount of practice.

 

[aitchsee]

I hear you Karen! Something just came to mind about the whole positive thinking thing - you might know of Louise Hay and her work on the power of the mind and specifically affirmations. I even find it helpful just trying to always use a turn of phrase in daily life (whether out loud or to myself) that's positive and try to avoid speaking about anything in terms of lack. I don't mean positive in a fake, overly cheerful way though.