Hi, all. (Also, I'm on the fast track out, I think.)

[pssst]

Diagnosed June of this year. I was on the verge of a fresh start, looking forward to growth and love and sex and happiness. A few months later, walking is pretty hard (standing is a bit harder), my left arm is weak, my left-hand grip strength is for crap. I'm falling apart, twitch by twitch.

I owe this to my dad, whose been going around six years with the same thing. I am convinced I have far less time.

The people at the big-time University clinic here have no empathy, so to hell with them.

I hear that some people with ALS get better, or that this sometimes just peaks. However, as I don't gamble, I'm not cheered by whatever happens on the fringe of the bell curve.

I'm on Rilutek, antidepressants, C, E, and b-c.

Both EMG and NVC point to (in the doctor's words) what can only be ALS. The second opinion concurs.

I have a pending prescription (if that's the word) to get tested for heavy metals, but reading up on this doesn't sound anything like what I have. I don't want the test, because I cannot handle the despair of negative results. (I've experienced this with the negative MRI and blood panels, and can't stand the feeling.)

My stress level is unimaginable. (Er...perhaps not, given where I'm posting.) Every time I think about what's going on, I get a metallic taste in my mouth, which seems to be from stress. So ALS causes stress, which causes more stress, etc.

I read about what this does to relationships, and it seems that the ideas I had about forming friendships, romantic relationships, or other connections are just pointless, as I will only end up causing catastrophic hurt in others. Who the hell is going to try and fall in love with someone who can't walk well, is only going to get worse, and is soon toast?

I want to walk, to bicycle, to skip (not much...just periodically). I want to learn an instrument. I want to beam with pleasure. I want to see Japan. I want to have vigorous sex and eat food...not at the same time, necessarily. My universe is ending.

I don't have any questions. I just needed to get the things in my head in front of me, and for whatever reason, share them with others.

Thanks.

 

[Marjorie R. Wilcox]

How old are you, may I ask.... and what makes you think you can't do all of the above? You are the same person with the same attributes as before your diagnosed..... My hubby has had a diagnosed of ALS for 3 years and we are mad about each other and absolutely sex crazy about each other. I understand ALS doesn't take that aspect of life away! He has been tested for metals, Lyme disease,STDs and even alcoholism (when he never drinks!) The VA just doesn't want to grant disability benefits even though he did 2 tours in Vietnam and was exposed to Agent Orange. Dear Friend, I hope you get a grip soon and make lots of friends here on the forum.

Don't live each day like you are dying.... live each day like you have no knowledge. None of us know what a day will bring.

 

[pssst]

Fair questions, and thank you very much for your response. I hope it's okay that I bring up sex here. I think it's just an appetite...frankly, I just no longer worry about exposing my thoughts...especially anonymously.

How old are you, may I ask....

39. And a half.

and what makes you think you can't do all of the above?

As far as intimacy is concerned, because I don't know how i can form that sort of relationship right now. Limping up to a woman and introducing myself (forget sex, just trying to sound confident in a "nice to meet you" sort of way) seems overwhelming. And really, I think, unfair for me to do. Like I'm promising what I can't deliver. My balance is way off, my arms are getting weaker. I can't help but think I'm not exactly the ideal at this point, and I'm going downhill. It seems my body forgets how to do one thing a week. I've fallen down...several times. It hurts so much. I don't know how to be confident, knowing that I might pitch over at any moment.

I'm glad for you and your husband. Really sincerely, warmly glad. I filed for divorce a bit ago, because both of us were profoundly unhappy. I like to think that the stress brought on by the realization of my deep unhappiness is what caused this crap. Since the cause is still unknown, I can think whatever I want. ;-)

Then my wife killed herself, in a way that was particularly cruel to me. So I just feel toxic. "Hi. I'm newly widowed and have ALS. Would you like to have coffee with me?" Yuck. (Okay, that's probably not the ideal way to introduce myself. But that's who it feels like I am. Make sense?)

For a year, I was a gym rat. I did this to relieve stress, and it worked. After the diagnosis, I stopped...just fell out of the routine. I went back a week ago, looking forward to the activity. I tried the wall-climber first...the first time I put my toes on one of the rocks to push myself up, the clonus kicked in and just kept going and going. So I got off, lightly punched the machine, said a very bad word, and went and did something lighter.

I was on my driveway the other night. The cicadas were out, buzzing around the light near the garage doors. I think they're neat (the cicadas, not the garage doors), so I walk towards them. One buzzes my ear, and my stupid reflexes kick in, causing me to fall backwards onto the driveway. No injuries, but my pride was in little bitty pieces.

I just can't think that this is what I have to anticipate: the elimination of things I enjoy.

Oh, that your teetotaler husband was checked for alcoholism is just insulting. I'm sorry to hear that happened.

 

[irismarie]

Pssst! Yes, let's be honest, you are going to go on losing bits and pieces but as you have already been assured, you need not worry about the sex bit. And think more like a woman, get to know someone before worrying about the sex
We are all faced with a very unpleasant truth. We go along with it and make the most of it and win little battles against it if we are lucky from time to time/ or we get dragged along by it, screaming and kicking and get no pleasure out of life at all. Yours is the decision to make. Already it is clear from your writing that you are intelligent, have a good sense of humour and are very expressive in your writing. So there is at least writing out there waiting for you. New direction? New career?
If you are meeting a new lady at a restaurant, get there first then you have a chance to explain. I think wheelchairs are more glamorous than sticks or walkers so maybe get one nice and early and go for the sympathy vote as an opener;-)
You are too bright to be beaten already by this. Honestly the sex should not be a problem tho that will depend quite a lot on your new partner and will to try different things than "normal" perhaps.
As to exercise and gym. NO NO NO NO . It will do far more harm than good now. Do not push yourself in any physical way.
Pride in bits? Forget it! Pride is nothing to cling on to anyway. Think of holding on to your humour, your sense of self worth for other things than your physical capabilities, all the good things you like about yourself and other people have said they like. Pride, dignity, you can throw those right out of the window and learn to laugh at yourself. The only way.
As to love. All of us all over the world, well and ill, are looking for that except those lucky few here who have been blessed already.
So a new way of life. A hard way of life/ But find ways to help yourself along, to make the physically hard easier and find good friends you can shout and cry at. We are good listeners here
I send you love and courage
Irismarie

 

[jewelchic70]

I just wanted to throw something out here. Being a 39 year old woman.........I wouldn't hesitate to let "anything" including ALS to get in between me & what may possibly open doors to a loving relationship with a man. A "truly" good woman with compassion wouldn't! And, There are others that feel the same!

Pstt, You are still you! Nothing has changed.
I cant imagine how hard it must be dealing with this disease but please dont let it sway you from your passions in life, including Love.
Please remember that LOVE is not about the good but it shares the downs as well and I hope you will be open to allow that possibility to be a part of your life.

"It is better to have loved & lossed than to never have loved at all"

God created us through LOVE TO LOVE! Dont give up! ;-)

 

[LizT]

i just wanted to add that i fell for a guy who is completely paralyzed except for eye movement and some facial expressions. he cant speak. and he is also on a ventilator. he is the best thing (other than my daughter) that has ever happened to me. he is truly my soulmate and i wouldnt trade hime for ANYONE in the world. also, i am 27 years old.
so you see, pssst, do not give up. what all these folks are saying is true. dont let the beast define who you are.
when you meet the right one, she will see past the ALS and see you.
id also like to add that i didnt know him before he was in this condition- so again, give love and life a chance.
im very sorry youve been diagnosed with this beast and im sorry about your wife. keep posting here. we can help.

 

[Joyce Arline]

I was moved by your introduction. I feel like a newbie too but, in fact, I have learned a 'bookful of knowledge' from these wonderful people on this forum. Whether you believe it or not, you have already begun to form relationships..right here. I joined the forum July 30th because my friend was diagnosed with ALS in May. What I learned from him was that anger was the safest feeling to share. He was sooo PO ed at this disease. He was an orthopedic surgeon and verbally monitored the progression of his disease on all his systems of his body. He was not going to let his body be taken over by this disease. Yet he was so depressed. He was fortunate to have family around to urge him to grab onto the moment. He wasn't always grateful (can't blame him) Humor is what helped diffuse the emotions. Using this forum to let off steam sure helps both the person with ALS and the caretakers. Because..others know what you are going through and offer suggestions to try. No one says "I don't understand or I haven't a clue". I read once of this person who started a subject of 'what they can still do'. Its tough but it helps to realize that you are you and not your disease. I can't tell you how much I was helped during my friend's illness and especially last week. There may not be medicine to cure ALS but there is the power of caring that is here for the taking. God bless all of you on the forum.

 

[pssst]

Thank you all for the responses; I owe everyone responses of my own. I'm a bit overloaded (in a good way) right now; will get to writing ASAP.

I will say that the communication from y'all to me helps...and I would not have expected that, despite years of experience with online communities. Thank you.

 

[jewelchic70]

Hi Pstt,

Just checking in. Wanted to let you know I was thinking about you!

 

[Zaphoon]

Hey there, Pssst! I think you spelled that wrong but I understand.

Yep, sounds like you've got the crud alright; progressive weakness, loss of balance, screwed up EMG/NCV and have experienced the cold, indifference of the KC clinic on top of it. I'm with you on your thoughts regarding further testing that looks only to confirm what has already been given twice.

What a crappy way to be widowed!

For what it's worth, I'm sorry you've gone through so much in such a short span of time.

I'd start planning that trip to Japan.

I'd join a rip-roaring church and meet every single lady I could. One of them would be bound to love me, marry me and copulate with me on a regular basis.

At least, this is what I did when I was a single man back in the 70's.

Hey, love is really, really blind! I once started pointing out some of my physical flaws to a girlfriend and when I was finished, she told me, "I hadn't noticed those things before."

I dropped her off at her house and cussed myself blue all of the way home.

You seem a good fellow, one that can write in an entertaining fashion. Now that you are here, I, for one, would hate to see you go any time soon.

Please, stick around! You have much to offer!