About the partner's in this group experience with AMN

[fdonaire]

I have Addison disease since i was 15 years old and i'm taking corticoids to help me on that. I had the AMN diagnosis in 2013 and i was 56 years old, has passed 7 years and my walk capability is a lot worse and i have disturb on urine and intestine, how about the partner's disease evolution what can i wait for ?

[mariagno]

If you are asking what to expect, everyone's outcomes are different.

I was diagnosed in 1995. Went from running daily, to jogging daily, to walking daily, to walking with a cane, to walking with arm crutches, to a wheelchair in 18 years.

Had depression, have bladder and bowel issues, have sexual issues

No Addison disease.

My brain MRI and Spinal MRI have been "non-remarkable" (good) since 1995.

I am in better shape at 58 than what I was at 48. I use a manual wheelchair to stay fit. Not motorized just my arms and my wife's occasional push.

I eat healthy. I do not think I have eaten fast food in 7 years. I lost 50 pounds.

I take Vitamin D, Alpha Lipoic Acid, L'Argentine, L'Cartinine, Oxybuterine, modifinil,and 4-AP. I work out a couple hours a day 4 times a week.

You can control your symptoms but there is no cure for the disease.

Give up your vanity. If you need a chair get a chair. If you need an adult diaper, wear it.

As the person who set this group up told me in 1995, you got to keep moving. Moving is life, when you stop that, life becomes shorter very quickly..

Best of luck! We are dealing with it in our own ways.

[fdonaire in reply to mariagno]

Mariagno

You are a very good example. I'm investing all time as i can in phisioterapy and yoga, i'still work every day 5 hours per day, and i'm spending at least 2 hours in exercises with canadian crutches, 1 hour on meditation and yogue culture that doing very good to me. i'm using adult diaper since 1 year ago, i trying exercises for the perineum to see if help. My intestine costipation got better with 2 to 3 litters of water daily and probiotic yougurt.

What's the Vitamin D dosage you are using ?

Let's keep in touch thanks

[mariagno in reply to fdonaire]

I think Vitamin D is just 2000 IU I live in Texas and get out in the sun a lot.

[COwithAMN Administrator AMN EASIER Volunteer]

mariagno is correct in everything he says. He and I are similar except I am 19 years older. We can show for certain that life can go on well despite AMN.

I have the same bladder and bowel issues. I am planning to write a piece about the bowel issues soon.

On bladder, it depends on how bad things are. At the start, I ignored it. After a few leaks, I found neat stick-on pads from TENA that you can stick inside your underwear. They are good. Three or four years ago things got worse and another chap recommended a urinary penile sheath (not a catheter) which then attaches to a leg bag. All from Coloplast. They are excellent. Wear them all day under your trousers. Change them or empty them if they get too full. I also use them at night while asleep.


The only thing to remember is that the bladder is permanently "full"; the bags catch the overflow. So I also self-catheterise twice a day - morning and before bed - to give it some relief.

So, don’t suffer in silence about bladder and bowel problems. They are not perfect by any means but they can make a difference.