Acceptance.

[LessThanRich]

This will be my last post on this as if you haven't understood my point by now, there is no chance.

Accepting AMN and that you are now handicapped is a difficult thing to hear, I know someone told me once. We all have different reactions to this, myself personally, I bought a bar/restaurant. I really didn;t like being told I was handicapped.. I was recognised officially handicapped 4 years before receiving my diagnosis.

Since closing my bar and receiving a diagnosis of AMN I have accepted a lot of things. It hurt a lot psychologically, but that';s how it is and its not gonna change. You need to get over it. Great if you are in early stages and you can still get about, but once you have lost ability and fallen over, even once. Its time to think about getting wheels.

As I have said countless times before, a wheelchair is just replacement legs for people who's legs don;t work. Its 2019 and there is no stigma over being a handicapped wheelchair user anymore.

Why suffer mobility issues and the pain of falling when you don;t have to? If you want to live as normal a life as possible without relying on other people to do things for you, then you have little choice. If you haven;t tested a wheelchair, at least give it a go to see what I am talking about. If you suffer anything like me, then you will benefit, guaranteed.

[Rosita5]

Hello Rich,

Thank you for posting, you’ve shown me a different perspective around the wheelchair and coping in general. There really is a lot of stigma surrounding it. I am a 28 year old female who just started having muscle spasm all over her body. I am quite frightened because I don’t know what the future holds but whatever it holds I know that if it’s something to make my life bareable/livable I.e. depends diapers, wheelchair, cane, I will use it or do it.

I used to smoke a lot of weed in high school and have always been a fanatic about its healing properties. I stopped once I had to start adulting in my late teens but I will probably take it up again.

I just wanted you to know that your words have not fallen on deaf ears (or would it be “blind eyes” on this forum lol.) I don’t think this should be your last post because you contribute a different perspective that is ever so important and we are your community. Anyway, we are here for you if you change you mind about this being your past post.

[LessThanRich in reply to Rosita5]

There is a stigma over wheelchairs and weed. Unfortunately I need both to be able to carry on. I am glad I can break the stigma a bit. Once you are psychologically cool with a wheelchair, it poses little hindrance and would just improve your life.

I just did another post for you

[Klorda in reply to LessThanRich]

I think you're fantastic with your attitude!!

[jolocny Volunteer]

I have to laugh ... I’ve said the same a LOT and reading your post brings it up to date. I fully believe that if one goes to a grocery or drug store that they should use one of the electric carts to save energy and face. If you want to spend time with people you’re buying dinner for, take a cart so you can be with them! I found that introducing my family to what I could or couldn’t do was resfreshing for all of us. They were more than happy to help with anything that needed doing. It was sometimes difficult as it could be hard for them to accept that I wasn’t still as strong as always. The brain fog was horrendous and would be a problem to my stability if I didn’t pay attention to it. It was easy to just sit for 10-15 minutes and then be able to enjoy them!

I have been in a wheelchair for 6 years now. We’d jusy moved into our new home (quite accessible for wheelchairs with ramps, etc.) I tried to “pull my weight” while getting settled in and ended up breaking bones in a foot while pushing to be my previous, able self. Not good! I have been in a WC since. BUT, I can do pretty much anything I want! I have a power chair and am able to get out of the house when I want now. 3 years ago I even took a volunteer position as director of the local emergency food pantry! Being with a large group of volunteers helping the local hungry is truly rewarding. I keep it all in order financially, support training & the ability of our volunteers to be present and in support of the clients.

All of my capabilities are possible with use of WC’s. Wouldn’t be possible without them! Shopping can be enjoyable again, just getting out and ‘cruising’ is great! True, some areas aren’t WC friendly. But some of those can be changed, with our input it’s easier for others to see problems and correct them. I can be pretty vocal when I need to be, it’s only going to help others in the same predicament!!

I’ve written more than I’d planned ... the usual! Lol!

Hoping everyone makes the best of today!!

[SongStream in reply to jolocny]

Thanks for the reminder! After the gym, I sometimes go grocery shopping. I always feel that I can handle it but alas, no. I am more so tired when I get home and I gave more than 100% which made my math all wrong with regards to pacing. I swear I'm going to run down those shoppers who get in the way for my Costco samples! Wish you well!

[LessThanRich in reply to SongStream]

So far on my other posts you have been staunch anti-wheelchair. Now you are telling us you could benefit. When I post if its not applicable to you ignore it, otherwise digest it and take from it what you will. No negativity.

[SongStream in reply to LessThanRich]

Huh? I bought a chair 6 mos. ago (I only posted mine since I felt you were adamant that everyone who "suffers" gets one). However, I only use mine outdoors and still maintain mobility through grit and hard work: Physical therapy, pool therapy, treadmill, weights, balance exercises, deep stretching, yoga, work on core muscles and nutrition/diet. Had I not practiced yoga prior to my diagnosis and kept consistent with my exercises and the gym, I would be permanently in a wheelchair like my brother. When I had not gone to the gym in lieu of the amount of work and time moving to another residence, I couldn't walk for days since I couldn't do both. I was utterly terrified! But when I returned back to the gym and my established routine, I slowly got better and mobile. No negativity here but getting real having been only diagnosed 20 years ago!

For all those newly diagnosed, go to physical therapy, pool therapy and learn yoga (even modified if you require it). Work hard. But don't rely on a wheelchair full time unless you're in rehab. You got to put in the work! I'm a member of the United Spinal Network (AMN is a spinal cord injury) here in the U.S., and we all have to put in the work, take care of ourselves. Being inactive and overweight can bring on other problems such as heart disease and diabetes which can create additional peripheral neuropathy. Also, high risk of osteoporosis due to reduced weight bearing activity on the legs. This is why I use the treadmill (not cycling) often alternating with and without hands (muscle memory) on the hand rails , using the grocery cart, etc., And if you're depressed? Get professional help. Self medication like drinking and drugs will only accelerate your axon degeneration. Sadly, we have lost some in our community because of it.

[LessThanRich in reply to SongStream]

A valid point. Although equally you could accept the illness and not waste time and energy fighting it, as winning is impossible. I think you are better to accept it and get some kit to help.

I am always only talking to severe sufferers of AMN like myself. Ignore my posts if they aren;t relevant to you personally, but take from them what you will.

[SongStream in reply to LessThanRich]

Not waste time and energy fighting it, as winning is impossible. I think you are better to accept it and get some kit to help. I am always only talking to severe sufferers of AMN like myself.

I find your comment insulting and a discredit for those of us who are on a diligent program because of our severity. I respect you are a newcomer but I must tell you your words sometimes come across as brash, bullish and condescending. You stated in one of your posts that "Since being diagnosed it seems I have become an AMN expert specialist." I'm sorry, but you're not. I have met more than a few and have learned from them. They are the experts and I share (articulate) that information with my neurologist, endocrinologist, physical therapist and primary care physician who are my team. That's why I had to post.

[LessThanRich in reply to SongStream]

I think its great, but my point is, why struggle whatsoever? I did that for 7 years. I am done. Easy life from now on please. I am venting and telling you how I have pretty much beaten my AMN. Take from it what you will. The fact two people have adopted wheelchairs as a result of my posts shows I am doing something positive. Ignore it if it doesn't apply to you at the moment.

[LessThanRich in reply to LessThanRich]

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.

Honestly I think its great you have a life built around a regime that keeps you going. But why? You can never win or get better. I personally definitely prefer to accept my problems and live a life without having do anything in particular (other than vape medical weed and use catheters) to get by. I fought for 7 years, it was futile.

[SongStream in reply to jolocny]

Jolocny, I was thinking of you today when I used the scooter at the grocery store after I went to the gym. I was exhausted even though I just had to pick up a couple of items. and even though I wasn't in it that long, it felt great conserving my energy. It was a proud moment realizing I was taking care of myself and that I could do both. Thanks.

[Equinney]

Rich, you opened my eyes to the use of a WC and just today have borrowed one to try out...AMAZING difference. Only used it outside but went up and down our driveway. Was great to be able to move so much and so much faster than I have. Thank you for opening my eyes to that possibility. I still use a cane around the house, will be upgrading to a walker soon. (If insurance will cover it). And will be asking for a WC of my own also that I can go off the pavement easier. It has given me a new hope and I feel like I’m not going to let this defeat me. Even looking at finishing college now and find a desk job. Thank you Rich (and M) for the mental adjustment.

[SongStream]

What an inspiring post and an tranformative event! Now you can go on long "walks" with your loved ones and live life. Congrats!

[LessThanRich]

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