I have received quite a bit of negative feedback over my posts. I'm not sure how, I am talking about myself and suggesting things that might help you, based on what I use to get by. Evidently its a cultural difference as 100% of opposition has come from Americans. I don;t like being told what to do or how to do it either. However, once upon a time a Dutch amputee at a music festival in Belgium told me I should get a wheelchair. Not a doctor, just someone who has lived with mobility problems. This started something turning in my head and an incredible 3 years later I took his advice.
It hurt my ego a lot to sit down, however it improved my life no end. I am from Wales and I live in France nowadays after living all over the world. I am culturally open and ready to listen and sometimes accept what I am told.
Whatever your current level of AMN, you can almost 100% expect it to get worse and my opinions as a severe sufferer are invaluable for lost people struck by this awful affliction. I will never back down and I will promote what I believe. Take from my posts what you will, otherwise just ignore them, they weren;t meant for you.
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LessThanRich
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As an American, I have no opposition from your posts and enjoy reading them. We definitely are all in a different stage of the AMN game and it's good to read about what is working for those further advanced. The only reference I have is my brother who unfortunately moved onto ALD and he passed away last year. We have a few on the board who are 40's-50's and it's good to hear about them as it definitely also affects everyone different. Cheers and nothing but the best for you, and everyone here!
Haha! I am not accusing all Americans. Eric is the prime example who is in the process of adopting a wheelchair and catheters into his life as a result of my posts!
Yes, there are all stages, but surely when we get to severe we need to address some very serious issues. This hurts emotionally, and your ego will get dented. But given the alternative, I would go this way about things..
Rich, there are several reasons why you've gotten negative reactions on some of your posts. First and foremost, you're not an expert on AMN. I recognize that you have been dealing with symptoms for several years, but you received your diagnosis 15 months ago, and I suspect that you were not even aware of this disease for much time prior to that. This hardly makes you an expert. There are men and women who have been members of this forum for many years, and have been dealing with the effects of this disease for decades, who wouldn't claim to be experts on it. As for myself, I have an extensive family history of AMN/ALD, with no fewer than a dozen family members affected by this disease. I've lost a second cousin to childhood cerebral ALD, and my grandfather and great-uncle to AMN. I read and study constantly about our disease, and certainly know more than several of my doctors about this condition, but none of this makes me an expert.
Further claims that you have "beaten" your AMN by utilizing a wheelchair and other assistive devices ring false. As I've mentioned on another post, there are a multitude of possible AMN symptoms that are completely unable to be resolved by using a wheelchair (bowel issues, severe neuropathy, myoclonic jerks, sexual sensation issues, cognitive fatigue - just to name a few). I sincerely appreciate the fact that your wheelchair means so much to you and has made such a positive impact on your life with AMN - that is absolutely wonderful. But this is not a "one size fits all" disease, and you just keep harping on the topic of a wheelchair over and over and over ad nauseum. We get it. Truly, we do. We all recognize the value of wheelchairs and power chairs, and those of us who are at the stage of needing them are not going to let pride or ignorance stop us from utilizing them. As for myself, I am looking into getting a wheelchair for longer treks with my family and friends. But this doesn't mean that I won't continue to go out for walks with my daughter, pushing her in her stroller, which allows me to keep my balance. I fully accept the reality that this disease is degenerative, but I am committed to keeping as much strength and mobility as I realistically can, for the sake of engaging more fully with my child.
Finally, you have made several statements in this forum that come across in a negative light. You've openly criticized other members of the group, implying that they are ignorant, don't know as much as you do, or haven't reached the level of severity that you feel you are at. You've stated, "The amount of good that has come out of my posts so far is great", and "my opinions as a severe sufferer are invaluable for lost people struck by this awful affliction". This just sounds like delusions of grandeur. It may be true that there are some on here who've given more consideration to utilizing a wheelchair because of posts you've made, but there are far more facets and complications of this disease beyond mobility issues, and I wish you could recognize this. You've mentioned before that you don't believe in using oral medications to treat symptoms, so that is a perfect example of an area where another member of this group would be more knowledgeable and better equipped to provide guidance to other members. When I first found this forum several years ago, I didn't even post a single comment for the first six months, but instead took the time to read the questions and recommendations of others, in order to get a sense of what this community is all about. I have profound respect for other members of this group, and have made wonderful connections through it. My advice would be that you tone down your rhetoric a little bit, and take the time to get a sense for the atmosphere of this community and gain an appreciation for it.
I am done posting really. I got through to a couple of people and got them to add wheelchairs and catheters and hand controls and stuff. That's super positive. For anyone else who maybe earlier stage AMN, I have given you some insight of what you can possibly look forward to. I'm not really talking to people who have been dealing with it for decades, but I am interested for another reason in these people, mainly their own posts. However, if you suffer like me and don;t use a wheelchair I think you have some kind of sadistic self-abuse problem. I have no idea why anyone would suffer trying to walk with (severe) AMN. The moment you deem yourself handicapped, get a wheelchair. Boom - easy.
I want to say for the most part I have beaten my AMN, I am doing really good. You can;t have worthwhile sex. Deal with it. Something I have dealt with for half my life. I have saved my ED post thus far, expect one shortly. Otherwise I would like to say a wheelchair would help with pretty much all the others problems you listed. I have shared with you what I deem the bare essentials to be able to cope with this terrible illness. If you don;t need the equipment at this precise moment that's great, but give it 5 years..... I went from walking to wheelchair in 7 years.
Let me level with you Rich. I've been a member of this community for quite some time and no one every came across as brazen as you! Are you familiar with ALD life and their annual community weekend? aldlife.org/patient-informa...
As you likel to travel, I highly reccommend it! Here in the states, we also have annual international conferences with a depth of information where you can meet the experts and us "sufferers". We share information, listen and learn!
You don't "beat AMN" and you certainly didn't fool me. Here, let's take a look at some of your posts:
I have been suffering for 10 years and a diagnosed just 15 months. I am an old hand AMN now. Ask me for advice.
(No, thank you . As I have AMN - not "suffer", you only sound pitiful -for over 20 years and Chris, I know has had it for over 30 years, none of us think we're "old hands". We are, however, still both mobile and trim while going to the gym 3 x's a week. We work hard like others on this forum! By the way, have you ever worked consistently with a physical therapist and establish any program without giving up? I'm not talking about orthotics either. But only because I did for "old hand" years, I qualified for the current international drug trial and I'm one of the oldest.
Talking about a fellow member: 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.I hope to represent the new generation of AMN sufferers and naturally this is gonna put some people out.
(A lot of us don't have the time for those with defiant ears,. And yet you are a very poor example of the new generation of AMN "sufferers". For example , see Aaron's -who is younger that you-reply above and those thoughtful posts of our new youngest member, Matthew.
I have really struggled alone for over 3 years, especially the last 15 months since receiving diagnosis.
before Mika came along it was a really dark depression.
(These are heatfelt and honest but it sure didn't last.)
I know significantly more than my neurologist who apparently is an expert. So yes, I now deem myself an expert too. After 10 years of dealing with this daily, I think I am competent.
I'm quite apalled at one who "beat AMN" who dismisses his own neurologist because "you know more than him" rather than do what of lot of us do and that is have your neuro consult with an AMN expert. I also do this for physical therapy which is crucial! You have to do the work and be your own patient advocate. This means more than recruiting wheelchair users. I swear I thought you got paid commission or something with every referral! This reeks of insecurity.)
Obviously the next stage is to test it in the house too to see if it can make you life better there too! I am so pleased for you and its nice to have some testimony rather than opposition from speculators.
For someone who had his first fall? Really? This is blatantly bad advice for someone already working with a physical therapist Can you imagine the sea of wheelchairs for everyone that fell indoors once? i.e. elderly, etc.... What, another commission? I attended a class where I was the youngest and everyone was elderly on balance and risk of falls. No wheelchairs. Just those with/out walkers and canes.
i was offered to go to Paris for drug trials, I asked how much it paid, when they said "nothing" , I told them to go take a running jump. Guinea pig for free? I don't think so.
Again, you post without thinking not realizing that we are volunteering 2 years into this study to hopefully contribute to improving the lives of ALD/AMN patients. Such dismissiveness is repulsed and reciprocated!
In sum, Rich, you mostly cast and sown seeds of doubt with some helplessness and hopelessness thrown in which is why I wrote this rebuttal for all those future visitors with AMN know that knowledge is power (!) and we certainly don't fit nor wear the very same shoes.
You're too much. Here in the states we don't consider ourselves "handicap" but persons who are disabled. Yes, I have a "handicapped" placard for parking and yes, I am disabled from work accepted by my long term disability insurance carrier and the Social Security Disability Insurance both the very first time which is a feat in the United States so don't throw me your ode to suffering and woes.
Psychologically I tell myself I beat AMN. Obviously its still there, but affects me as little as possible nowadays. What I really did was go and find a load of equipment. But psychologically "I won."
And if you want to give 2 years to a drug trial. Good for you. Don;t make me do it too. I am up for treating visible symptoms and getting through without meds. Which I am doing pretty well to be honest. But I am not guinea pigging a drug and not getting paid for it. The pharmaceutical industry makes millions off selling drugs every year. They can pay their guinea pigs. I am not being put out for free and a medication which probably doesn;t work.
Being a female, living in uk, having ALD for 20 years, and belonging to this wonderful group since it started I felt I had to say thank you Song Stream and Aaron98 for your words.
I'm American and I am truly inspired by your posts. I hope to have your attitude if and when the day comes that I have to use a wheelchair. Currently, I keep trying to run on the treadmill (holding on), the elliptical machine and weight machines hoping to keep my body remembering how to move. I have just purchased a 3-wheel rollator so I can try to run outside. To some people, it may look like I am disabled but I don't care what other people think. I want to stay moving as long as I can.
You have a great attitude and doing the best you can. That's all we can do: Keep on, keeping on. And if the time comes you need to use a wheelchair, you will be okay with that.
I also live in UK, I am a bereaved mum of 62, my son died of ALD. I was diagnosed when walking through Bristol’s Children’s Hospital, 20 years ago. I own a manual wheelchair and two power chairs. I take pain medication, 3 different drugs, 5 times a day to be able to sleep for more than 4 hours. The pain I feel from severe myoclonic jerks is excruciating at times and don’t get me started on falling, I am unable to get up from the floor. I have more equipment than I have time to list. It must be nice not to have to take medication. I do not consider myself to be an expert on AMN/ALD, nor do I consider myself to be more affected, a lot less than some of the others, on this website
I am glad you posted your experiences! The way AMN works it often takes years for others to arrive where you and I are, if they do at all. I made a choice to go to a chair back when I was interviewing for a job (which I got). Although I had crutches, my family said I looked more reliable and steady in a chair. A plus was the elimination of a safety concern.
Basically, you're dealing with reality constructively. This projects a higher level of emotional intelligence.
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