New? Introduce Yourself - Say Hello

Lark said:

Hello everyone,
This is all very new to me so please bear with me.
Thank you.
Lark

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Hello I am new too help!

Welcome to the forum Debbie

I am sorry you have to be here just like the rest of us, but you will find more support, compassion, encouragement, and answers to your questions here at this forum.

Feel free to ask any questions you have concerns about and sometimes you can use the search function above to see where other people have discuss things you are wondering about.

For me the thing that has helped me the most, besides the support here, has been trying to maintain a positive outlook on life. It's hard to do that with any disease I guess, but with ALS it's even harder. I accept the fact that I am dying, which it was hard to get past the river of de-nile as we like to call it, and I try to focus all my energies on living each and every day to the fullest. Loving my family, wife, 4 children, and 14 grandchildren. That sounds like a full time job in itself.

I also try to have ALS free days for my care giver, my wife, where she can go out with some of her friends and do things she likes to do without worrying about me. I know she is under tremendous strain and worry, and needs to take a break from it all ever now and then. As I get worse and need more care I will bring in help to care for me so she can get her needed rest and time away from me. No need in both of us dying. For after all when I am gone she still has a life to live and needs to be prepared emotionally as best as possible to do just that, live.

Hope some of this helps. If you have any questions just jump into any of the forums and ask.

God Bless
Big AL

Thanks for your reply, there are lots of things I would like to ask you but I really wouldn't want to upset you! Do you have the uncontrolled emotional breakdowns i.e. crying and laughing - this is what my dad is going through now! He keeps saying he doesn't feel sorry for himself (although he has every right) but he can't control the crying when it happens but he doesn't obviously like being like that in front of his grandchildren etc.! Are you still mobile? I am from Essex (UK)!

My dad was diagnosed just over two years ago and then told two weeks later it was a mistake! But as he was still losing his voice and moving slower they continued test after test until the following six months later they re-confirmed it was MSN but they couldn't say whether it was fast or slow! I am from London (UK). How are you coping?

hi

My name is Sandra,i'm new in this web.
My husband is 45 and was diagnoss with ALS on 2002,he is in a wheel chair,can't talk very good anymore,but he is a very strong man,very positive,his only problem is me,because i'm not strong like him,and sometimes i just think the i'm not gone make with out him,especially for our 4 year old daugther,i feel depressed,helpless,i just don't know what to do.I cried every day when i'm alone,i'm sorry i just need to talk to somebody.

Hi Sandra. Can I ask where you are from. Just the state or province is ok if you don't want to get too personal. Is there a support group for ALS caregivers in your area? They can help you cope with what you are going through. It is very hard on the caregivers and they need looking after too. We'll try to help you out if we can. Feel free to ask as many questions as you need to.
Debbie. I don't think there is too much that you can ask here that will upset most of us here. Ask what you need to know. If we don't know, someone will know where the answer is. Take care. AL.

Hi Sandra,
I am brand new too...you are not alone. My mom was just diagnosed with als and I am also looking for emotional support...people to talk and share with. Feel free to leave a message. My only draw back is it's a brand new thing for me and I don't have the info the others can add. I would just be a good listener and I understand how you feel. Good Luck and God Bless-Laura

hello

i have a friend with als and i am looking for ways to help modify her home to make it easier to move about. i am at a loss as far as available resources. i have contacted the local als social worker here in richmond ,va as a start.any tips/suggestions would be greatly appreciated! i am so glad i found this site.

sdrn

Hi sdrn. Sorry about your friend but I'm glad she has a friend like you to help her. If you use the search feature above and type in bathroom layout/design help there are a couple of tips that might get you started. Take care. AL.

I started the same way in 1999 with slurred speech and it stayed that way for 5 years and not one md would tell me what I had until it when to my arms in my 6th year then one md committed and very bluntly YOU HAVE ALS my husband and I cried now I am in my 7th year and my arms are worse I work up till 2005 and I still am very active , emg this year showed weakness in my arms but all other test are still neg. It is a process of elimiation.they still are not sure what variance of als I have . Hang in there Keep active and never never give in never. PAT

Tried To Focus On Living And Not Als Dont Let It Take Hole Of You And Ruin The Life You Have Now Worrying About Getting The Disease Will Not Let You Get It Or Not. I Know Its Terrible To Lose A Love One But Please Be Happy To Be Alive .keep Busy And Keep God In Your Life Pat

xsparklingwinex said:

Hello. My name is Holly and I am new. I am 24 years old and was diagnosed with ALS 2 years ago. I don't know anyone here. I was hoping to make some new online friends.

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HI HOLLY I AM PAT SORRY YOU HAVE THIS DISEASE AT YOUR AGE DONT GIVE UP THERES ALWAY HOPE KEEP PRAYING I HAVE IT 7YEARS AND I AM STILL ACTIVE. HANG IN THERE PAT

Al said:

Hi Karen and thanks for joining. We need some old timers here to kind of let some of us relatively short timers know that there is hope. 6 1/2 years is great. Don't take that the wrong way but with so many of us passing before 5 years it is almost a joy to hear of someone doing well or as well as can be expected with this disease after more than 6 years. Looking forward to your input. AL.

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I HAVE ALS SINCE JULY 99 AND I AM STILL HERE. SO DONT GIVE UP PAT

I am new here

Hi My name is Paula.
In june of 05 i started new career,,otr truck driver. Shortly after starting to drive i noticed diff odd things going on with me,,alot of weakness in hands then legs. I was told by other drivers it takes about a yr to get adjusted to driving so i didnt think much of it. April 1 of 06 was the last time i drove. April 4 went to er,,was taken off work. Then had blood tests done,2 mri. April 13 was told i had als. Also had nerve tests emg i think its called.
I am 42 yrs old. I live in Wisconsin
This disease has been going pretty rapid for me,,i am waiting for electric wheelchair to come in. I have posted on here b4,,never introduced self tho.
Wanted to say hi and also im so so happy to find you all.

Paula

Thanks for the intro Paula. Sorry about your luck having to be here but as you say, it's a good place to find. AL.