Probably unjustified. But got my goat.

[LessThanRich]

So a fella contacted me on facebook yesterday claiming to suffer "ALD" and in his fifties been suffering for like 2 or 3 years.

I told him its a shame he suffers, but he was lucky that he had lived his life before this struck, he said he didn;t think he was lucky. He also sent me 4 "ALD awareness" articles about him in which I found inaccurate information (as far as I know) and pretty irrelevant as it was a lot of his life story and not so much about AMN. I don;t know where they had been published but nowhere important or interesting I imagine.

I asked him if he had a wheelchair, he said "no". I told him you can beat almost all the symptoms of AMN instantly if you get a wheelchair and take your legs out of play. He is gonna ask his wife.

I don;t what it was that got to me. I know this isn;t a competition and "I am sicker than you". Not at all. And as a lot of you know I am more than happy to talk to anyone anytime about AMN. But I seriously don't have time for uninformed people, who don;t help themselves and publish inaccurate articles raising inaccurate awareness and don;t know the actual name of the disease they suffer from.

Sorry if this seems unjustified. Venting is healthy.

[AussieBob]

Why don’t you publish those articles here for others to support their veracity or otherwise

[LessThanRich in reply to AussieBob]

patientworthy.com/2018/04/1...

I don't know where the other ones have gone, but they were all pretty much the same

[LessThanRich in reply to LessThanRich]

After re-reading this one, its not as bad as I thought, but still..

[monkeybus]

Michael Conway. Don't we know him? Isn't he a member? Rings a bell.

[LessThanRich in reply to monkeybus]

Wouldn;t surprise me, he was perfectly pleasant too. I am grumpy I think.

[SongStream]

This was a good read and I appreciate all who speak out and spread awareness.

[LessThanRich in reply to SongStream]

This article isn;t so bad. The other ones were worse, I learnt all about his family and their various non-AMN ailments. I am willing to talk to him and offer advice. But our cases are very far removed. It shouldn;t have annoyed me and I think its me not coping very well in general. I am a terrible handicapped person overall.

[Aaron98]

"I told him you can beat almost all the symptoms of AMN instantly if you get a wheelchair and take your legs out of play."

I'm sorry, LessThanRich, but I'm going to have to disagree with you on this one. Maybe our symptoms are different, but I know that I have many symptoms that a wheelchair would not resolve. Fatigue, urinary and bowel symptoms (urgency, frequency), leg spasms, severe nerve pain (probably my worst symptom), brain fog, sexual effects (decrease in sensation), etc. None of these would be resolved simply by adding a wheelchair to the equation.

I respect the fact that you love your wheelchair so much, and believe that it has given you more freedom than you feel you had prior to using it. That's wonderful. My grandfather, who had AMN and eventually died from it, used a wheelchair and motorized scooter for the last 20+ years of his life. It's a reality that many of us face, and it is certainly nice to have the option of utilizing one. I am absolutely not opposed to it, and I would like to have one available to me for taking longer treks with my wife, when I'm unable to walk long distances. But I still plan to keep walking as long as I can, even if it means using a cane and struggling through my steps. I don't see a wheelchair as the "big fix" that you seem to - as I stated before, there are so many complications from AMN that a wheelchair cannot begin to address.

Respectfully,

Aaron

[LessThanRich in reply to Aaron98]

Excuse me. Whilst I of course agree with you 100% as I suffer from all this too. I was talking day to day mobility. And the worst bit of AMN for me is your legs don;t work. Literally getting a wheelchair replaces them, and you can pretty much live a normal life, alone even.

I don;t count any of those things you listed as they are almost incidental to my life now. A wheelchair would help with some of those symptoms too, fatigue, spasms, urgent toilet etc. Nerve pain admittedly is a big one I can't comment on really. I think I am in constant pain, but due to suffering it for years and the amount of medical weed I take I am on the whole comfortably numb.. Other than Toviaz for bladder I take no meds.

I am a staunch advocate for wheelchairs and I wholeheartedly believe that with mine, I am not even handicapped, just short, albeit still suffering most of the problems you listed above..

[LessThanRich]

Have you tested a wheelchair? I can only say good things come from it. I am anti struggling through life when you don;t have to. And I respect you wanna keep fighting it, but its not like its gonna go away, so from my stance you are better to accept it and get certain items to improve your life. Mine include

Wheelchair

Electric gates

Car with hand controls

Portable mini-ramp (for steps when you aren;t at home)

Adapted bathroom with handles/seat in the shower

I hope I manage to beat a lot of the symptoms by adding these simple things to my life. So in conclusion you do need a bit more than just a wheelchair. But for nearly 3 years I lived alone with a wheelchair, but not the other things. and I am saying its the most important. I limped around for 7 years before going "fuck it" and sitting down, that was 4 years ago.

[Aaron98 in reply to LessThanRich]

I get what you're saying. I've never used a wheelchair before. My neurologist actually wrote me a prescription for one when I saw him last week, so that I have it available to me for longer treks with my wife, if I want. I'm thinking about it, but I would need to see what insurance would cover.

I am with you 100% on the value of a shower chair, by the way. They are worth their weight in gold, and I can now relax and enjoy a shower without worrying about falling over or getting lightheaded. One of the best purchases I've ever made.

What kind of hand controls do you use for your car? What was the cost like? And what do you mean by electric gates? Do you mean for your backyard/garden?

[LessThanRich in reply to Aaron98]

Yeh gates to keep my dogs in the garden. You can only imagine how annoying it is to get out the car to close gates when you wanna go out.

I drive an adapted Transit van. I have a big ring over my steering wheel as the accelerator and a bar underneath as the brake. Of course it automatic. My van also has a ramp on the side so no taking my chair apart. And the whole thing cost me 5500€ then 2000€ to fix it up. Now it is like new.

Until you have tested a wheelchair I don;t think you can have an opinion, you are just stipulating. If you are anything like me you will benefit from one. Promise. My first chair I borrowed from a local pharmacy, but I have since bought one with the help of a handicapped association who paid 2/3 of it for me. My next chair (coming very soon) is being paid for 100% by my health insurance. I am very interested in your opinions. Please test one and let me know! I hope this helped.

[COwithAMN Administrator AMN EASIER Volunteer in reply to LessThanRich]

Can you tell me more about the particular technology you have installed for the hand controls please? Is there a brand/manufacturer name and web site I can look at here in the U.K? I am thinking about hand controls myself and have not had a chance to see this type.

[LessThanRich in reply to COwithAMN]

I have no idea, I just bought the car with them already installed. Surely any good local retailer will be able to help you. There are various solution. I like the one I got

[SongStream]

Adapted bathroom with handles/seat in the shower:

I have handrails and a bench installed in the shower. (I once fell backwards out of the shower and landed on the shower curtain. It was a thick one and now I know I fractured more than one rib since I recently had a rib fracture.)

Don't forget to install grip rails near the toilet . Both of these have been a life saver and prevented many falls.

Will start a new thread so I can post me and my "new power wheels".

[KennyInPA in reply to SongStream]

It's funny as I moved into my apartment 9 years ago, well before the AMN symptoms started. We laughed as it is handicapped accessible with grab bars by the toilet and in the shower. It's now a blessing as they come in handy!

[SongStream in reply to KennyInPA]

That is so funny but so true! Before AMN and as a child, these were a mystery and looked so foreign to me. Something like parallel bars.

[Hidden]

Hi, Can I please ask that everyone respects each other and their own way of dealing with having AMN/ALD. Please do not vent personal frustrations about other members on this forum.

Michael is very well informed of his own condition and symptoms and has done a huge amount of work in raising awareness of the condition which he should be congratulated for.

Everyone has their own way of dealing with the symptoms they suffer from and it is great to see so many people sharing advice about the equipment they have found helpful.

[COwithAMN Administrator AMN EASIER Volunteer in reply to Hidden]

Yes, I agree with all you have said. Michael is well known to many in the AMN community in the U.K. and contributes much to patient support. We are all different as human beings and in our experience of AMN. On this forum, it's always best to say what works for you - it may not work for everyone else but if it helps somebody it's worth it.

Chris

[JasonHarnum in reply to Hidden]

Lame call Admin!

LessThanRich's Subject starts off, "Probably unjustified...".

And ends with "Sorry if this seems unjustified. Venting is healthy..."

He posts in the thread..."After re-reading this one, it's not as bad as I thought, but still.."

Further posts in the thread..."Wouldn't surprise me, he was perfectly pleasant too. I am grumpy I think."

Why the heck is everyone so damn sensitive?

[LessThanRich in reply to JasonHarnum]

AND its a true story. I didn;t make this up. Someone approached me after suffering for 2 years with little info and no clue. I assume he has AMN too, but he said ALD. He had not considered a wheelchair despite having legs that don;t work. I still don;t have time for uninformed people who don;t help themselves or know the name of their actual disease.

[Klorda]

Like you, I am greatful that my symptoms have appeared in my late 50s (unlike my nephew, who is in his 20s). I am a female and I know symptoms are not as severe as they are for men but again, I am greatful that I've had a really fun time being single and able to live my life effortlessly without AMN symptoms until now. But like you, I refuse to give in, sit at home and do nothing. I will keep moving as long as I can.

[LessThanRich in reply to Klorda]

I am 37 and started suffering when I was 26. Nowadays I hope I have all necessary equipment to let me live as normal a life as possible. It took some time, and a lot of thinking, but its all under control.