Hello, it's my time to join

[LittleKnight]

Hello group members, my name is Steve and this is my first post. I was diagnosed with MND about three months ago, and clarified to ALS a few weeks later. At age 51, I'm apparently still in the early stages: I'm ambulatory, but have constantly twitching muscles; stiff and clumsy hands; and difficulties with swallowing, including numerous instances of choking on liquids. My most prominent symptom right now, however, is a speech impairment which has progressed rapidly in the last few weeks. These are all classic ALS symptoms, but I ask those who are reading this to please take a look at the next post I make, which I'll call "ALS and Headaches": I really need help with this one.

Needless to say, my new life conditions have made me confused and sad and fearful. As someone who has previously led a blessedly simple and pleasant life, I feel unprepared for such adversity. I'm introducing myself now because I want to learn from all of you how to be strong, and I truly hope I can reciprocate and provide some kind of help to others on this forum.

 

[Jeanau]

Welcome to the forum....but, sorry you have to be here. These forums have added something to my ALS journey that I can't explain. There's something to be said for "being in it together". Though I have many people in my life who love me, the people on this board are really the only people in my life who understand all of the many emotions I am struggling with as I experience daily changes in my body. God bless you and your family as you adjust to both your diagnosis and the illness!

 

[krnNdug]

I am sorry to meet you here, but it is a great forum. As to the headache, without reading your post, I am betting you need to get a Bipap. You probably have a buildup of CO2 which happens to us pALS. I just got mine but it still needs to be adjusted a bit.

 

[nebrhahe53]

Steve I'm so sorry for you. You sound like I was last year. It will be a year since my diagnosis June 25. I can still walk- sort of, but my hands are going quickly and I frequently feel out of breath. Can't hold my head up either, but if anyone drops something, I'm usually the first to find it! I never appreciated floors as much as I do now.
It's a rotten dirty crappy disease, but the person above was right- no one but those experiencing it can possibly understand.
Read the threads here, they are full of information even your ALS doctor doesn't know. If you have specific questions ask.
I hope your journey is as easy as possible.

Neil

 

[LittleKnight]

Thank you all for your replies; it helps to know I'm not alone! (And I notice that I've actually visited all of your home states Strange for a guy who rarely strayed far from home!) I hope we can become friends, and give each other support.

 

[lgelb]

LittleKnight, you don't have to learn how to be strong. You just have to deal with one problem at a time, as always, while laying the financial, legal and social foundation for the rest of your life and any family's.

It sounds like your headache may be improving, so you might want to look at a device that you could use for speech generation, like an iOS or Android device for when you are out as well as at home. If you tell us what you have, we can advise you on software to check out. You may also want to start making a list of thin liquids and/or other foods that trigger choking, eliminating those, and exploring the world of thick soups, smoothies and cottage cheese, among other things, for some possible additions.

--Laurie

 

[djbailey]

Welcome to the forum.

 

[patrick123]

Welcome to the club Steve. I like write. I wrote this a few months after my diagnosis. I think we all go through this.

I have ALS and I've got to to believe there is life after learning I have this decease. Big life! It's more intense, more colorful and much faster. I have learned about myself and others that astound. You become stronger and maybe a little braver than you think. I have learned to take nothing for granted. I love more deeply, I forgive easily, I seek forgiveness. I live more forcefully. Although I have lost a few friends. I have gained many more. Are there things that upset me, yes! But I try not dwell on the things I cannot change.

Live well and dance in your underpants

Patrick

 

[MaxEidswick]

>I never appreciated floors as much as I do now.



like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick

people, especially w/ respiratory problems.


> I do know it is healthier to be thankful for what still works than to resent what doesn't

(easier said than done )

also remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to

friends and family, too.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have

found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

there's always someone who's got it worse...

find good thoughts to shift when the bad thoughts slide in ...

Max

 

[chally]

hey steve, i think you will find many helpful friends and suggestions here on this forum. welcome! one day at a time! chally

 

[Lynda]

Welcome to the group. As everyone else will say, we're sorry to meet you but glad you found us.

Your symptoms sound a lot like my husband's. He is also newly diagnosed.

This group is chock full of some really excellent information. No question is stupid. No rant is held against you.

Baby steps.

 

[Mtzu]

Yes, welcome to the group and sorry you are meeting us under these conditions. This group has been extremely helpful to us. There's a tremendous amount knowledge and insight here. There are also some sections that are a bit more light-hearted and entertaining too. And, it's a place to have a rant and get things off your chest when needed as well. Feel free to share what's on your mind. It would be hard to find a more supportive place.
-Michael

 

[davbo49]

being strong steve is something we all try to be. but iiwii max made a good point. it's about living. do all you can why you can and when the next day comes......... bonus, welcome we all are in this to gather.

 

[affected]

Sorry to extend our welcome. We never want new members, but now you are here we will all do what we can to help.

 

[LittleKnight]

Thank you all for the continuing replies. I agree, this forum is full of hard-to-find information, rapid responses, and friendly folks. Thanks again!