Helllo...

[DannyJ]

Just a quick HI, My name is Danny from Cambridge England. My 3 uncles died from ALD some years ago, My mother was tested and was found to be a carrier, I was also tested and found to have ALD X linked, at the age of 32.. I closed the eyes to it all, hoping it would just go away.. Well now I’m 36 I’m starting to get some symptoms. Legs/knee pain, balance issues, and tiredness. I read from some of the story’s on here we are all in the same boat.. But just wanted to share anything I can so it might help others and I understand what we are going through. I did see both uncles in their final weeks and its playing on my mind.. But then I have family members who had the childhood onset and never made it or going through treatment now and count myself lucky I have made it this far!

[DannyJ]

sorry 2 uncles died as Adults, 1 died before my time as a child..

[mariagno]

Danny, I am so sorry your family has gone through so much. I can offer you this, outcomes are different for every individual.

I was diagnosed with AMN in 1995. I was 32 and would fall while running. I am now 51, my MRI's continue to show no brain or spinal involvement. I am now in a wheelchair after several years of falling and breaking bones. I had let myself get out of shape. I have lost 40 pounds and have set a goal to get back up on my leg crutches his year. I am married and have two kids. My kids have never looked at me as anything but their dad. I have had to alter my work duties but have had no problem with that.

When I was first diagnosed, I took it as a death sentence. After a couple of years, I realized that I needed to make the best I could and refused to let AMN define who I am. I still have frustrating moments but found out that letting people in to help me through these moments is important.

Anyway, good luck to you. Don't give up. Stay positive.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Mike

Very sorry to hear about your situation also. Mike who has just replied to you is a great example of how to approach AMN - in a word, to think positive, live your life to as full a degree as you can, eat healthily and to take as much exercise as you feel able to.

I have had AMN for 30+ years as you can see from my profile (click on my name). I can still get around a bit with a stick but I need an electric scooter to get anywhere other than short distances. I go to the gym 3 times a week.

You sound very positive about your situation which is great. Having a positive attitude is 90% of the battle.

I live in London so I would be happy to meet up sometime if you can come up from Cambridge. There are also one of two guys in your age group who you could meet who you could probably relate to better than me - I have just turned 70 though I don't usually feel it!

But my experience and Mike's is (hopefully) living proof that you can live well despite AMN.

You may know that ALD Life organises a once-a-year weekend meeting of AMN-ers and families of children affected by ALD. Do try and come to this year's meeting which is near Birmingham. I can get you denials. It's one great way to realise that you are not alone.

All the best,

Chris

[DannyJ]

Thank you Gents, Great words.. Been playing Rugby for the past 20 years, and attend the gym 5-6 days a week. Just the last 3/4 months I lost a little hope and have let me fitness laps, your advice will get my ass back in there!

Being diagnosed before I had any problems/symptoms was too easy, being told what might happen etc., I was able to think “this will not happen to me” and just get on with life. Now things are starting to get real I started to worry.. But seeing both you two working through has raised my spirits.

Spent a lot of time with the experts and councillors before they gave me my results, and have never been one to talk things over, more of a play it my ear kind of guy.. So for the people who I know are in the same boat as me, but can’t bring yourself to face the facts.. trust me.. just a little post on here has made a world of difference to me in just a week…

[Pcutsor]

Hang in there Danny, I know all of what your going through. I,will be 57 in May this year. It,s been a tuff road. I was a very active guy, could do anything, snow ski, ater ski football, baseball. Worked in the Blacksmith trade. Don.t give up! Keep doing what yoIu do as long as you can and have a work out schedule. Make those legs work. I haven,t ever taken any drugs . I lift weights 2 days a week and ride a bike once a week. I used to do a lot more. I use a cane for walking but I wouldn,t call it walking. I hoping they will find some kind of cure someday if I last that long. I lost a younger brother in 96 from this. Pat

[menaborges]

Hi Danny!!! I was tested last year and I am a carrier too! I am 35 yrs old and I think I have some symptoms. How is your knee pain?? For me it hurts a little on the side, squatting really low a d going up. I also think I have bladder issue. Can't wait for your comments!!!