where to begin?

[WordyCF]

never reached out before...after reading previous posts,dont know if my complaints are insignificant or if I have too many to list...I'm 66 yrs and so far I have damaged myself a good deal (broken bones,etc)from falling down, cant drive because cant feel below my knees,my memory is worthless,I wear depends around the clock, have not had an erection in 12 years(my wife still lets me live at home),I take so much Gabapentin that I have difficulty keeping BMsfrom being too hard or too soft,I have torturous internal itching(which is one reason I take alot of Gabapentin),I am easily confused, my hearing is going, my vision is going, I cannot smell anything,I use canes and or walker but will need to upgrade soon... if I didnt have a busy life with children and grandchildren, I would probably have been institutionalized by now...I would love to talk to anyone about their experiences.

[COwithAMN Administrator AMN EASIER Volunteer]

Thanks for getting in touch. You certainly have a lot to deal with and everyone here will be able to empathise with your problems.

The first thing to say is you have many friends here who can and will help in one way or another. So never feel that you can't ask for help on this forum, and I am so glad that you did.

You don't say where you live except that is the US, but which region or city? You may be near someone who you could meet to talk with.

The next thing to ask is whether you have had a formal diagnosis of AMN, and where that was done? You don't say much about your medical care - can you say something? Have you got a doctor who is helping with your problems?

The third thing is that, with so many issues to think about, it might be helpful to isolate each one and try and work out a plan for each one. If you do this, individual problems may look more manageable. Thinking about all of them together is enough to make anyone feel low. For example, regarding driving, hand controls are very good and many people use them. I am getting them fitted myself soon.

Do not give up the fight, even though sometimes it all feels hopeless. You have made the first move and can build upon that.

Very best wishes

Chris

[monkeybus]

I'll second young Chris. You can't give up hope. Have you had a formal diagnosis? Do you have a half-way decent neurologist? Have you sought second/third opinions?

I dread to think what state I'd be in if I'd stayed with my first/second neurologist.

One plain fact about this disease is the symptoms can be treated, to a greater or lesser extent. A lot of us are on wildly different drugs. Anything has to be worth a try.

And that's not empty rhetoric on my part. Please let us have further details. There is a lot of experience on this site.

Take care. Talk to you soon.

[mariagno]

Keep going just lean on people who may have overcome the same hurdles. Lean on your family.

First off, you need a med check from an independent eye. Second opinion time. Too much of the various medications can cause so many problems with memory, BM's, erections, vitality, spirit, and other things.

I broke 3 ankles, hip, and a vertebrae before I gave in to a manual wheelchair. I use a Tilite that is easy to disassemble and easy to lift. I use to rarely go out because of fear of falling. A trip to the mall was one store and home. Now, I roll all over in my chair. It is great exercise and a great ay to move around quickly.

I drive a Ford Edge using a simple Menox hand control.

youtube.com/watch?v=HFfxFoV...(Not working as expected?)

Erections, I use an Trimix injection. No problems.

I feel your frustration and know how you feel. Been there. I went through depression, allowed doctors to over prescribe, and sunk into a very deep hole. I felt I was losing who I was, my family, and my health.

I minimized the meds, improved my eating habits, found ways to exercise, got out of the house, and stopped searching for cures.

I am 56 years old. I have never been happier in my AMN life period.

From my wheelchair yesterday, I installed some sprinklers and grass seed in my yard. It was 101 degrees and I felt great. Believe me, I climbed out of a very deep hole.

I hope you can make some changes, see improvement, and find a new vitality and purposeful life.

Best of luck to you.