How does everyone cope with fear regarding this disease?
Of things getting worse?
going cerebral, dying, going in a wheelchair(if ur still not)...
I am having terrible trouble with this.
It's always in the back of my head at all times.
Even when I am having fun.
I imagine myself in the worst case scenario and get depressed.
I also get anxiety attacks too.
any advice??
No one gets off this planet alive and everyone has there own cross to bare while on it. I don't know how people without faith in God carry there cross. Seem impossible to me. If I thought this is all we get and than become worm food it would make my cross to heavy to carry for me. Even with faith it sometimes becomes a heavy load and I find myself feeling sorry for myself. When those times hit just look around and you will find someone worse off and standing tall to bring you back to reality. One thing that drives me crazy is people who worry about getting worse while they shoot themselves in the foot. What I am saying is with this illness we should eat low fat and try to keep active and if your sitting on the coach eating Pizza your shooting. Worrying will not change much and probably make things worse so I pray and do what I can to slow progression. Does it stop all the stress? No, but it gives me a better place to go with my mind. John
In my opinion this is the best reply for anyone going through tough times JohnH. This is my view on all things life throws our way. Faith is all the strength I need. And to see someone else worse off does make you look at your own life and count all the blessings we have. Anxiety is hard to deal with and certainly a chat with your Doctor would be a good step yoshitohinton. Prayer is powerful....God Bless
You may need to speak to your G P, as there is support out there, in the form of CBT or counselling. It may just help you to talk to someone about how worried and concerned you are and although they can't take the condition away from you, they can help you to develop better coping strategies, which will help you on a day to day basis. Personally, I do Yoga and use the relaxation techniques whenever I feel the need. I'm a firm believer in taking each day as it comes and living for today. No-one can predict what's going to happen in the future and even those that appear fit and healthy now and don't seem to have a care in the world can be struck down by other illnesses. Swimming is a great form of exercise as your legs can move freely in the water and the weightlessness enables me to feel "normal" again. I'm using orthotics which have helped with my walking and I'm in the process of trialling FES, which is an electrical stimulation treatment used for Stroke and MS patients. I can provide further details and contacts if you are interested. I will post an update when I have used the device. Hope this helps
I have found that my faith has pulled me through this. It is my belief that my son is sick for a reason and we need to accept it and move forward. I went to a lot of counseling over the years and that did help but I guess it has been God's grace that has brought us through. Life is very difficult.....sometimes you wonder why you were chosen to have such a heart wrenching situation to deal with. I believe that God put my son and myself on this earth to accomplish something and this is the cross that we have to bear. I try to enjoy every moment that I can. It is not easy - it never will be but you have to move forward and understand that there is a reason for everything and God will give you the grace to make it through.
Hi there. Just to let you know I do not have faith to support me and struggle with the threat of cerebral involvement. I lost my brother recently to this and it was terrible to watch. That said I have 6 monthly MRI scans to keep on top of things and also went through all the scenarios I could be faced with including checking insurance policies. Oddly I now don't worry as much because I feel I am back in control. Hope this helps. Mark
Newly diagnosed AMN woman w/AMN son looking for diet/oil advice and experiences. 
33 with AMN - Introduction
More controversial medication. I still don;t care if you are anti.
MIN-102 update: summer 2022
