Hello, my name is Tom, and I am a proud new member of Neurotalk. I am 66years old. I used to be very active physically, in superb condition; for over a decade, 1989-2002, I worked out religiously in a gym for 3 hours, 3 days per week under the guidance of a former Olympic coach. One hour or so with weights (not heavy -- light, with repetitions), the rest with stretching. I felt great. Before that, from 1974-1986, I jogged 3 1/2 miles, 3 times per week. Terrible pains in the back of my knees forced me to stop. I learned some stretching exercises; the pain went away.

Around 2002, after coming home from the gym, I started having strange pains and weaknesses in my legs (they would suddenly start to double up; I never fell, but came close). I had polio at the age of 8, and spent a month in the hospital -- and years doing physcial rehab. I lived a very normal life. So, I figured I had post polio syndrome, and stopped the gym.

Weakness in both legs; incredible stiffness in the morning; tripping on carpets; difficulty swallowing -- all the usual stuff. My condition worsened. I am now essentially house-bound. Sure, I can go to the supermarket, etc., but I pay a terrible price at night, stiffness, soreness. I have all the classic symptoms of PPS, but also of ALS and others as well. I can't walk to the end of the street without being out of breath. Climbing stairs, well, I have to concentrate on what I'm doing.

I have seen three doctors, including a neurologist who gave me an EMG, and told me that he doesn't know what I have -- but that I have something serious. He is referring me to a rare disease specialist. He also put me on lyrica, which has masked 60% of the pain in my legs, but makes me feel exhausted. I live on the usual over-the-counter pain killers.

I attempted to take my life last year (overdose of StilNox, ambien) because I could feel my body being "boarded up." Beside an intermittent, bad burning pain in my right ankle, I have (sometimes) pains in the center of the palms of my hands: they are definitely neurological and surprised even the neurologist.

Whatever I have, I sense now that it cannot be cured, that I will be in a wheelchair in a few months. For a polio survivor, there is no worse outcome than to be handicapped and become a public charge. Thus, I would describe my present state of mind as a mixture of terror and resignation.

I caught myself last night thinking, "Thank God, there's death." I sense the end is approaching, and that there is no hope for me. Best to get it over with quickly.

My question to all of you out there: they say many diseases mimic PPS and ALS. What, specifically, are those diseases? Thanks ever so much for any information you can supply.

Hi Tom and welcome to NeuroTalk. I am so sorry that your health has deteriorated so and that you have yet to get a dx. As you can see there are many forums of interest here..and you will find this a great place to make friends and share information.

I mostly frequent the Survivors of Suicide forum..our only son killed himself about twenty years ago and it just about destroyed our entire family so please don't even consider that as an option..people who love you will be forever changed. I know that you want the pain the end...not your life.

ALS, PPS, MS....check out the forums.

http://neurotalk.psychcentral.com/thread112688.html

http://neurotalk.psychcentral.com/forum17.html

http://neurotalk.psychcentral.com/forum2.html

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Tom,
Your story went straight to my heart. At 46 I was Diagnosed with Primary Progressive Multiple Sclerosis (PPMS). I am now 54, in a chair the last year and half. Sometimes it is overwhelming, I remember how it used to be and realize now that's changed. But I know I can't leave, I still have stuff to do for/with my husband and kids. Yes it sucks but it is what it is. Don't try to predict your future (chair, etc,), no one can, not even the best neurologist. One day at a time.

Hello, Kicker: Thanks for your message. Well, that is the first time I ever heard of PPMS, so I thank you for telling me something I needed to know.

One of the maddening things about neuro diseases is that so little is understood about where they "are" and where they "are going." No wonder the dxs are so vague, based as they are on elimination. Let me note that at 54, you still have much of your life in front of you; consequently, I find your attitude to be more than just appropriate: it is essential. At 66, objectively speaking, I'm facing a different situation.

Your note on "One day at a time" resonated. The best advice I got so far came a year ago from my brother, a retired neurosurgeon. "Sometimes you have to just put one foot in front of the other." The problem is, as time passes and my condition worsens, one foot -- the right one -- seems to have other ideas.

Welcome to NT

This is a great place for support and information.

We do support each other. We understand here at NT.

Never give up.

I met a lady in a nautropathic treatment setting who had been in a bad motorcycle accident. She has actually been to India and had embryonic stem cell treatments. She can walk now. They're doing amazing things with stem cells. I hear there's a lady in the UK who has donated 15.4 million to a research center for MS and other neurological disorders. She's the Harry Potter author.

Here's a wikipedia if you care to read. Although it seems she's not in harmony with the organization.

My hats off to her for the heart she has. I know she's "Harry Potter R$ICH" and that's what makes her even more special.

http://en.wikipedia.org/wiki/J._K._Rowling

Let's keep thinking positive for the research and developments.

We just have to do what we have to do for now.

I hope you get some answers real soon. It helps to understand why.

Learning how to get diagnosed properly and then get treated takes lots of work!
IT IS SCARY AS HECK! You can lose your appetite during the 'process' thru worry. BUT DON'T!
Do NOT expect the absolute worst of what you may fear. Honestly it mite be something else from out in left field such as I got? [CIDP, and acquired auto-immune disease following a long flu/pneumonia bout-not a hereditary issue at all!] THEN? I got other things, such as cancer and a few other issues. Nothing, no problem after the first one! But after the fourth? Enuf.
Take a look please at this site? http://www.neuroexam.com/content.php?p=2 Then go from there? Get a handle on what the docs are looking for? It mite not be 'hoofbeats'...ergo horses? In your case it mite not be polio related? It could be a zebra in disguise... a different kind of neuro issue, that many live with and deal with.
It could be merely 'spinal'? Or, compression of nerves or auto-immune [what I have] But many here, are all kind, understanding and KNOW what you mean about the pain! I describe it as 'I don't have the energy to cry, and it doesn't do anything anyhow' at times. True- tests, take time and the results are often 'interpreted' differently? But as long as you've got a brain and the gumption? USE THEM! There have GOT to be docs out there in the world who can help YOU! Thing is? To FIND THEM! BTW? I found mine.
Don't know about you? I don't 'bounce' anymore! When I fall? I break. Isn't fun. But? I keep getting up and walk again! Even when I'm not expected to. WHY? Because I want to prove 'em wrong! I and YOU are stronger and smarter than 'they' are! So get to work! Hugs and hope... !!!!'s Truly - j

Hello, Allfe: Thanks for your comment. My heart goes out to you regarding the loss of your son. I do not have children; however, I cannot imagine a greater loss to any parent than that of a child.

I understand your approach of trying to dissuade people from taking their own lives; I would do no less if I were in your shoes. However, as my physical condition worsens and I am determined not to be a burden either to my family in particular or society in general, I become more and more convinced that death can in truth be a solution -- at least to certain, very special problems. I should note that last year I contacted two Swiss organizations, Dignitas and Exit, to no avail; both deal with cases such as mine. I would certainly like to take my life in a way that is not dangerous to myself or others, and have something in mind.

Darkness is setting in, along with profound sadness -- something beyond depression ("melancholia," perhaps). Again, more and more, I see no way out.

Hi, My name is Melody and I was reading all the responses to your post. I have to ask you something. Is your pain level managed? I mean, are you in such unbearable pain that you can't think straight, or are you just tired of living?

There is a big difference you know. I completely understand the mind set of a person who cannot find any pain relief. I am not condoning suicide under ANY circumstance, but I can understand that when a person is in agony 24/7, that the thought might cross their mind. This is a perfectly normal thought process.

I wonder if you have any kind of support system to help you deal with what you are dealing with. You mention that you do not have children. Do you have a mate, a good friend, SOMEONE that can be there for you when you are at your lowest point?

We all need people. Either being a friend to them, or having them be a friend to us. Sometimes being a friend to others helps us feel better.

Have you tried reaching out to anyone? What was their response? You say you don't want to be a burden to your family. What if something happened to them instead of to you? No one wants this to happen but sometimes, we are dealt a certain hand of cards.

We will be here for you anytime you wish to post any of your thoughts or questions, or if you just want to come by and share some ideas.

We are very nice people with various maladies but one thing we have in common is no one judges anyone else. That is not our role.

I believe we are a compassionate group made up of different kinds of personalities. Just think about this. Years ago, you never would have been able to post your problem on a message board and have different people try to reach out to you.

You will be in my prayers tonight. Here's a hug.

I wish for you a brighter tomorrow, whatever tomorrow brings you.

Take care,

Melody

Hello, Melody: Thanks ever so much for your message. No, I am not in constant pain, but I am in constant discomfort, mostly a sore back, and increasing weakness. That said, sometimes when I take a step there is a lightning bolt of pain in my hips; I have arthritis in both of them (consistent, I should add, with post polio syndrome, which is what I suspect I have. No professional dx yet). Also, I recently started having excruciating pain, very sharp, going upstairs in my right leg: sometimes, not always. The pain lasts for 2 seconds or so, involves the entire leg. I have not yet fallen, but almost did (for the first time) about a week ago. I am aware that these sharp pains can come any second, which makes walking dubious indeed. It is the NOT KNOWING when the pains will hit that is so debilitating, exhausting.

I live in Europe, so I am far from home and family. Nobody here understands what I am going through; they are inclined to think I am exaggerating at best, faking at worst. They are, in a word, irritated; I cannot say I blame them. From looking at the neurotalk forums, I am not the only one in that isolated condition. As you say, the forums provide what so many of us cannot find locally.

You mention sharing ideas...

Regarding suicide: I am not at all convinced now that suicide and taking one's own life are the same thing. The 200-plus people who jumped to their deaths from the burning World Trade Center were officially ruled NOT to have committed suicide. Rather, they were homicide victims. They had no choice (between being burned alive or dying quickly: there's no real choice there). So, in the end, they took their own lives.

Now, what if the "murderer" is not a person but a disease which, moreover, does not cause constant excruciating pain (comparable to the 9/11 fire) but debilitates its victim little by little -- killing him or her slowly, over the years? I ask: is not the victim just as much forced to "do something" as were the 200 people on 9/11, albeit forced in a different, more subtle way? I think suicide must be a voluntary act; to say someone was "forced to commit suicide" is, therefore, a contradiction in terms: that is the lesson of the 200. But if that is true, then people who are victims of debilitating diseases who kill themselves do not commit suicide; rather, they take their own lives.

Clearly, intention is also involved. The coroner of N.Y. noted that none of the 200 came to work intending to do what they did. Maybe, in suicide, the person intends to end life itself. When someone kills themself because of a serious disease (or a burning building), however, they do not intend to end life per se; they intend to end their suffering, and can do so only by taking their own lives. In that regard, to answer your question: no, I am not tired of living. I am tired of seeing my health deteriorate one inch at a time; tired of sudden pains; tired of perpetual weakness and discomfort; tired of being tired.

This whole question of what is suicide needs to be revisited. Socrates showed the incredible complexity of the issue: he was forced by the state to drink the hemlock (not suicide, therefore); however, when the moment came, he voluntarily -- truly willingly -- drank the poison (therefore, suicide). Now, that's a paradox for you.

You say it very well: sometimes, we are "dealt a certain hand of cards." The question comes down to this: do I want to be a burden to my family and others for a long, long time, or to be a burden for a week or two, settling my estate and so forth? Both are burdens, but I submit the latter is a lesser one.

Again, Melody, I thank you for your concern, your compassion, and your prayers.

Tom:

This is a long post, but I wanted to get the information to you.

So right now you are on Lyrica and over the counter meds. I would have suggested a fentanyl patch or something stronger (I have no doubt that you have access to this), but given your possible predisposition to take your life, I'm not going to go in that direction. You didn't mention alternative treatments. And don't laugh, but there ARE alternative treatments to what you have been taking.

My husband has severe neuropathy in his two feet. He admitted to the neuropathy support group that yes indeed, he has thought of suicide way back when his neuropathy was so bad he didn't know where else to go. Many others at the meeting also raised their hands when asked "have any of you had these thoughts?

He did try the fentanyl pain patch but they had to keep increasing the dose and then you can't have any more. So he had to detox and that was a BIG pain in the butt to get off of that drug.

So he tried acupuncture. Well you should have seen this man after his first appointment. He bounced out of the office. That's right, he BOUNCED.

He said "Oh my god, what a difference" Now I do not know if you have explored any of the alternative ways that many people explore.

Like yoga, meditation, acupuncture, etc.

I have diabetes. I have NOT gone through the hell that you obviously have gone through but I did have a bout with neuropathy that sent me temporarily reeling from the pain. I then knew WHAT MY HUSBAND HAD BEEN SUFFERING FROM.

See, no one who hasn't walked in your shoes, can possibly know what you are feeling. And when drugs do not work, we have to try and see if our bodies can start cooperating and heal on it's own.

Doesn't work for everyone, this I know. But I can assure you of one thing. It worked for me.

I have been a diabetic for 22 years, on insulin, on meds, high blood pressure, neuropathy, degenerative joint disease (notice the word degenerative).

I once had a doctor treat my frozen shoulder and he looked me in the face and said "Melody you have DEGENERATIVE joint disease, you DO know what the word DEGENERATIVE means, right? He wasn't trying to be cruel, he just wanted me to have the facts.

Want to know what I did with the facts? I decided to change the way I looked at food. Sounds stupid, right? Well, guess what? It saved my life.

Some years ago, I gave up Red meat, and started eating a plant based diet. You can look this up on google. It's a no brainer. You eat fresh stuff, nothing in a package, no meat, and you get rid of all the toxins in your body.

I have done this. I also went online and discovered the benefits of sprouting my own food.

Ever heard of sprouting? Neither did I. I happened to come across a video of someone sprouting her own broccoli seeds, (never heard of broccoli seeds at the time either), but I said "Melody, what on earth do you have to lose?" "Do you want to be unhealthy, diabetic, degenerative, blah blah, the rest of your life? or do you want to make an effort and see what happens when you change the nutrition in your body".

So, because I had absolutely nothing to lose, I made a change in what I put in my body. AND BOY DID THIS WORK FOR ME.

I went on youtube and watched a video on the benefits of broccoli sprouts. Blew me away. I then learned about the minerals, vitamins, life sustaining enzymes in sprouting other things. So I sprout organic seeds that I purchase online. You can do this because you obviously go online.

I make it simple. I just sprout broccoli, radish, FENUGREEK (which aside from broccoli, is VERY BENEFICIAL TO THE BODY), and I sprout whatever seeds I happen to buy.

I do not go to the store and purchase lettuce or stuff that I don't know where it came from because all that food was grown using pesticides. (You DO know what pesticides do to the body, right?) all kinds of nasty side effects. Neuropathy, being one of them.

It's amazing what happens when you put GOOD things in your body. You go to the bathroom effortlessly every day. You dont' get bloated, you don't get headaches, some of the aches and pains with being in your 60's, well they go away. It's like your body goes "hey, thanks, I'm feeling a bit better today".

I have been eating this way for 2 years. You couldn't make me go back in time and put whatever I used to put in my body, well I would not do it again.

My body now works. It didn't work that good before. I had a frozen shoulder that I could not bend behind my back. I can bend it much better now. Can I do push ups, sit ups, run a marathon, OF COURSE NOT. But I can move better than I ever could before.

I tell myself. "you are almost 63 years old and you got up this morning, and you were able to go out of the house and do what you had to do".

Two years ago, I was all bent up, and stiff as a board, and while I'm no spring chicken, I can move BETTER. Might be all in my head, but who cares. I CAN MOVE. And yeah, I have days when the barometer drops 20 degrees and my body says "ouch". But when the barometer is steady, my body does not say OUCH that much any more.

It's all baby steps.

Here's a link to one of my online videos. I was asked to make a video of how I sprout because I joined a sprouting message boards and we all get excited at what we do.

So click on this.

http://www.youtube.com/watch?v=KjwlIRrKRy0

You can also view my other videos because this video links to the others on youtube. I sprout lots of cool things.

And if this lights up your brain and you go "hey, what have I got to lose", well then google BENEFITS OF SPROUTING, and the immune system, and how it just might help.

What have you got to lose?

And you might even like the taste. I make sprout salads (I put things in that people put in salads), and I add a splash of extra virgin olive oil, tomatoes, black olives, sea salt, fresh ground pepper. FABULOUS. I put them on sandwiches. (I sneak them in my husband's meals.)

I give my sprouts away to my neighbors who say they don't have the time to start sprouting in trays like I do. To me, it's what I love to do. It's the greatest hobby I have EVER discovered because it saved my life (medically speaking I mean).

And my biggest advocate is my doctor. He's a body builder and you should have seen his face when I marched in with a bag of sprouts that I had just harvested in the morning. They were broccoli sprouts.

He turned to his other patient and said "See what my patients bring me? SPROUTS!!!!" I once asked him ."are you saying this to make me feel good or do you really know about the benefits of sprouting"?

He said to me "Are you for real?, keep sprouting and bringing me sprouts" We both laughed.

And my husband is his primary patient. My husband doesn't see food the way I see food. He sees it for what it does to his brain, so he eats things he is not supposed to eat.

He also seeds the doctor MORE THAN I DO.

And just to update you. I put NOTHING artificial in my body. I eat food that rots (eventually). No preservatives.

So tell yourself the following:

"What the heck do I have to lose, I might even like doing this"

For me, it's quite relaxing, and I can make a big deal out of sprouting, or I can just sprout one or two trays. It's the fact that you are growing your own food, WITHOUT PESTICIDES and if you look up what sprouts contain, well you just might see that this might be the thing you have been looking for to KEEP YOU GOING, and not go down that black hole.

I can only suggest this.

Look at my videos. Have a laugh or two at my expense. You can see the various methods I have tried.

For me, I healed my body nutritionally. I am almost off my insulin. Five years ago, I was on 46 units of Lantus and 2000 of some oral medication.

This morning I am down to 9 units AND NOTHING ELSE. And my glucose levels are just fine.

Now you might be saying "but she's a diabetic and I'm not a diabetic".

That's not my point.

My point is try and put some good LIVING FOOD in your body, and your body might just start cooperating.

There are no guarantees in life.

But right now, nothing else is working for you right?

I just want to help. Please believe that.

Melody