New and an ostrich

[kiwicafe]

Welcome to the New Ostrich, I am so grateful for this site or any site where I can share, cry or vent, pardon the pun. MyMDA site closed and now they are on FB, it's not the same. I am trying to be proactive but some days, moon phases maybe just get me. I also need to pace myself as I continue to believe I can do what I have done for 68 years. A friend from South Africa is riding his motorbike the length of New Zealand next month, 3 day ride and I filmed an interview with him this week, editing is a bit of a challenge but we are getting it done, oops, I am getting it done The proactive comments on this thread are important to me, I have tended to allow my life to simply free flow from childhood and it has served me well to now . . . now I need to plan. Thanks everyone for their comments. Thanks for being there, we are a very small, somewhat isolated community here in NZ and there is the 'English' proclivity to keep "one's problems to one's self" somewhat challenging.

 

[kiwicafe]

I have to be honest and say that, even though my 'official' diagnosis was clear and simple, being diagnosed with mnd/als has been a load off my mind and has given me a sense of freedom I would never have thought possible. My partner and I now live our lives deeper and richer, I was diagnosed last year. We have made our wills, including a living will. I have told my children, my family and slowly I am telling friends. I am more focussed on my creative endeavors than I have been for a while. Just now I am loading a fund raising film for a South African with ALS/MND. I shot the film last week and now it's finished. I can help others through the skills I have, it amazes me to think that I have such clarity. Sure it's a pain in the arse but 30 minutes ago I received an email from a dear friend in LA who's husband has just suffered another massive stroke and they are going to pull the plug tomorrow. He is an old film friend from the mid 70's. My two running pals from my Kiwi years have also gone. Other friends have life threatening illness's and my muy lovely partner just had a successful hysterectomy for Ovarian Cancer. Life is indeed a challenging journey at times and yet it is also magical as well as mystery. We lost 11 Hot Air balloters yesterday. You are not alone on this journey, none of us are. There are great sources of information, there are also many varieties of the condition. You are loved for simply being here, Richard XO