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dragonlibra

Active member
Joined
Jul 11, 2011
Messages
89
Diagnosis
09/2011
Country
US
State
PA
City
McKeesport
Helluva birthday gift I'll probably get next week. My neurologist is doing leg emg on me Wed. I believe from what he's said & my progressing arm weakness/atrophy/functional loss & leg/foot gait problems this will just confirm the monster has invaded.

My 59th BD is Thur. Helluva gift.

Being alone I admit I'm major league depressed and scared of the future. How fast the monster will attack my body. How I have to move on & try to adapt & depend on strangers. My thoughts have been in dark places today. Fear of all the things I need to get done on my own as my body weakens. I'm ready to get whatever diagnosis so I can find out what help I can get. What meds for symptoms & depression. All I have now is xanax from GP. And I'm tired of trying not to be Debbie Downer to coworkers & friends while being honest on what is happening to me. I think I don't have it in me to work much longer. I'm the lone IT person so have to get someone in & trained. I don't envy cleaning out 15 years of stuff out of office.

How did you all especially if alone move past the fear & depression of initial ALS diagnosis?

Those of you with family & friends caregivers treat them kindly & treasure them.

Sorry, I needed to get this out today. I keep thinking back a year ago while I may have been seeing quirky small symptoms in my hands I had no clue the monster that was stalking me. I intended to be a bad ass old lady with martial arts & ability to shoot. Hah, the monster had other plans. Wish there was some way to beat or shoot this monster down.

Rita
 
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Make sure to discuss antidepression medication with your doctor... it really can help, and since it takes a while to start working, the sooner you can begin taking it the better.
 
I will. I hope these neuros are more supportive after diagnosed. I'm not thrilled how they dropped possible MND on me with no support. Also canceled a test & didn't call me with each doc office pointing finger for not calling.
 
Rita, For what is worth from one living with this disease is to advise live one day at a time, that is what I have to do. Don't think too much, wait to see what the doc's have to say. It may well be something else, something treatable.

I have always remembered from an old tv show, called Kung Fu, It was so profound that I never forgot it...."Worrying does not change the future grasshopper", and ever so true!

The day I got my D X almost one year ago, after many years that is was everything else.. I asked the doc to send in my son to tell him also, He told my son, handed us a box of tissue and left the room. We both looked at it like what is that for?...My son turned to me and simply said "And you could get hit by a bus or have a heartattack too", end of disscucion. Believe it or not we both chuckled (at the box of tissue) as we both knew life itself is so uncertain we never know what tommarrow will bring for any of us.

We were not happy by any means, but what could we do about it?, nothing. I made a choice to Live with this dreadful disease not Die with it...I chose to Live as Best I can. I am single dealing with it as quietly as I can, doing all the paper work, leaving my job, getting all appointments in place, with as much humor and grace as I can and with the knowledge I have a Heavenly Father that knows all and trust Him with my life, He gave it to me, and He is in charge. It has also made a world of difference to my children (both grown w/families) and granchildren to use humor in dealing with every challenge that is thrown at me rather than pity myself and wollow in it. which would be destructive to me and everyone around me.

Today as I was out with two of my granddaughters shopping on my birthday, as they pushed me in the wheelchair, my hands, fingers and arms keep spazzing out and instead of freaking them out we had several laughing episodes as they would look so funny when they did this, I made light of it. I could have made it an awful experiance and say we have to leave now, but it is what it is, so I made the best of it with humor, it also puts there minds at ease, like it is now the new normal for me, and i am ok with it, so they are too.

I also understand depression have been there and done that in the past took the drugs but they never really helped me, that is when I came to the conclusion for me anyway it was my choice to do something about it and it had to start with my attitude and how I looked at the world. I had choices and so do you. If you can not and need some help then please get some help, that is a choice also, you are in charge to make the best possible choices for yourself.

If I am having a down day and it's hard to pull myself out of it, I just stay quiet by myself with the thought this will pass and tomarrow will be better, and make an effort to get better, but not push it. And it does get better, some how. Each day is different, But One Day at a Time, is my new motto. Some days, One moment at a time, or even one second at a time.

Since I found this forum it has Truely been my Lifeline, All those here whether they know it or not have keep my head above the deeps of despair, they are my friends and family, they understand this thing and offer Truth, Love, Compassion, Advise and Humor that I so needed and still do.

So sorry this was so long but it all just came pouring out. I hope and pray that it has helped you as you struugle to understand what is happening with your own body. I also Pray the doc's find nothing or a treatable condition, but if not and you do hear those dreaded words, we are here for you, to take your hand as others have taken ours to help us on our journey through this together.....Sending Love and Hugs,and HOPE.
 
I couldn't have said it better than Di did. Hang in there, hope it's something treatable, and if it's this nasty monster, deal with it one day at a time. Most important, laugh when you can.
 
Thanks all. Thanks Diane for taking the time to write all that! Words of wisdom I'll look back on often in the coming days. Oh and your blog on the beast.

I'm a lapsed Catheolic who wavers between thinking maybe there is a God or maybe there isn't. And guess I try to hedge my bets. I don't believe there is a divine destiny that said any of us were to be visited with a curse of Job. I don't believe in a divine destiny that was pre-ordained so I don't blame God, just fate.

I guess many here battling the monsters of these diseases & the Damn long odds of being the one to get - gee 5,000 new a year in US - have to wonder why you won this unlucky lottery instead of that lottery ticket you bought. I know people here from across globe not slighting you.

For the most part I've had a fairly lucky life. Guess fate has caught up. I was hoping I could go fast like my dad - boom dead of a heart attack at 82.
Hah irony is the non-smoker in my family will probably die the youngest.

So cruel many here are even younger. How you at times must curse the fates.

Well time to start another day on this new journey.
 
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Rita I am sorry you are having to deal with this as I am for all of us.

I was so depressed after finding out, even though I was in denial until I was told at the Mayo clinic, that i considered everything.

Now after almost 4 months I have turned that around. It is almost liberating to know that I need to make the most of every day and not put up with the least little bit of BS. I don't have time for negative people. I don't have time for inaction. I have to know what I can control and what I cant control.

I will share the secret of the circles that was shared with me many years ago. There are 2 circles. The outer circle is the circle of concern. these are things that we are concerned about, however no matter what we try or how much we want to effect these things there is nothing that can be done to change them. That doesn't mean we are any less concerned. We just cant do anything about these issues.

The inner circle is the circle of control. This is filled with the things in our lives that we can control and effect by our actions or inaction.

It is a fact that the circle you spend the most time in grows and grows and becomes the focus of your life.

What I am saying is grow the circle of control. do what you can to effect the things you can. try not to dwell on the things that concern you too much because they are what they are.

We are all going through something, all we can do is try to help one another make it a little easier.

I will be thinking of you, and Happy Birthday.
 
Egbar and Di said exactly what I think. I will tell you this thread saved me. I was at my lowest this summer. When I just couldn't cope with my thoughts I went to the joke, pub, happiness and tea thread. They are all people like us, with jobs, families and one heck of a uncertain future. If you told me a year ago I would have friends via online I would have laughed. How wrong I was.
Nothing is set in stone. I can tell you every morning I thank God for what I can do.
Talk to your Doctor, get meds for anxiety, check into drug trials. Be your OWN heathcare advocate.
You are not alone. Miles separate us but we are here for you.
 
Thanks susanf. Amazing how many friends I have here already. It's tough to talk to friends in my life. I know that it makes many uncomfortable though they have given me comfort. People at work have been great. But all here understand and are already on the journey I am just starting.

Rita
 
Meds are amazing. I don't know what my husband and I would do without them. It takes the edge off...it helps you to focus on what you have right now. Yes, you have to take one day at a time...and one moment at at time! The meds help to get to that point. And, when you need a bit more ask. My husband asked today at the ALS Clinic. He was increased from 20 mg to 50 mg. I am so grateful. He is home alone while I am at work and that is hard...and for you...alone with all of this... That is really, really hard! Please, know I am here in the forum and if you ever want to call. The monster has shown up in southwestern PA! :(
 
Hope it is not ALS - but if it is you will adapt to a new normal

Keep your mind occupied, take up a hobby, read books, take a course online, become your local chapter president of the Frankie Avalon fan club.

Check out the drug trials in your area and see if you can participate.

It is an incredibly exciting time in ALS research. For the first ever there are developments that promise real hope. Check out the research news section.

Good luck.
 
Rita, you're right, no one understands what we're going through except each other... the docs may have seen it before, they may research it, diagnose it, work on it, but they don't live it like we have to. Every choice can seem overwhelming, when all we want to do is go back to our normal. That "normal" is different now, but life is still good, and I don't intend to go anywhere for a good long time. This forum is definitely something that keeps me going everyday, I'm not alone in this. And people who will eventually become your caregivers are not going to be strangers for very long, they're going to be your friends as well, you just haven't met them yet.

Everyone who posted has said such profound things that I "like", there's not much more to add... take it one day at a time (as they say in AA) and don't focus too much on the future: plan for it, and then live your life! Go to places that you've always wanted to go to, visit old friends, and spend your money on yourself. Go skydiving, no one cares if you can walk right (as long as you can pull that cord mind you :)

And I truly believe that a treatment is just around the corner... check into some of the clinical trials that your neuro may recommend. I think the NP009 (?) not sure what number.... trial is still accepting patients.

Hang in there, and keep coming for tea with us!
 
Just do what the doctor's said because it can help a lot. Also be reminded that if you have that already better to be surrounded by great people around you so never let yourself to be sad all day, yes you can have your own time to think things around but most of it should be spend with people who can understand you and you can talk too.
 
You are not alone. You have a whole family here. I know leaving your job is hard. Don't forget about the "Power of Positive Thinking". It can do miracles!
 
Be sure to get things in order--file for disability so you have that. While you can--enjoy every day that you can. If you enjoy your job and have good insurance--great, keep it up for as long as you can--but if you don't want to do it and want to have fun--do that instead.

There are some meds that work for some and not so well for others. Most take about 6 weeks to kick in. Get in touch with the local ALSA if your diagnosis is confirmed. They will give you a lot of support hopefully.

Of course, the folks here will be able to help you a lot. There is a thread called rants and raves. A place to just vent. Make use of that forum when you need to. Sometimes, when we get depressed, just writing it out can help.

I hope they find another cause for you--but as rcharlton said--there is more hope today than even a year ago. Lots of trials--be sure to check into them.

Hugs
 
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