just found out I have als

[bossman]

I have just found out I have this took them a year to find this out.Im a carpenter and biker this is so hard to deal with for me.They dont know if it was the fall I had that got this going or not.I went to MAC to find out just the past week nad im still haveing a hard time.Im on w.s.i.b right now but when they find out there going to cut me off im sure.I have a hard time walking,eating with fork, drying myself off and so on.I hope I can find something here to help me out.

[safari101]

Bossman,

You will get lots of support emails tomorrow. It is late and I am on the West Coast, so I
happened to pick up your post.

Tough news. I am sorry.

There are many words of wisdom and encoruagment here. Also, tips on how to cope with your changing situation.

God Bless Bossman,

Jim

[Al]

Sorry about the diagnosis but Mac is a good place to go. I go to Sunnybrook in TO. Not much we can say but if anything you should contact ALS Ont. They are a real help with support and loaner pool for things you might need down the road. Web is www.alsont.ca That's me in the upper right corner. Ask any questions you might have. There are some good people here.

AL.

[CindyM]

HI Bossman. I am sorry to hear of your DX. feel free to ask just about anything. This is a great place to vent and get information. Cindy

[bossman]

thanks vent I will be doing a fair bit because im just mad about this whole thing.You work hard all you life I raised a son he is 18 and now it going to be taken away.Im a biker so I lose my new bike I got last year.

[CindyM]

I htink the loss gets to most people first. Everyone copes in their own way. You will find your way soon, I am sure! Regards, Cindy

[john529]

I myself just found out i have als. It was a shock to me and my family, ( a fantastic wife 2 great daughters and 3 beautiful grand kids). Right now i only have a problem with my speech, but i'm scared to death about what's going to happen later. The people ihave around me though have been a great help. So if you can try to get up every morning and say hello to the day.

[BethU]

I myself just found out i have als. It was a shock to me and my family, ( a fantastic wife 2 great daughters and 3 beautiful grand kids). Right now i only have a problem with my speech, but i'm scared to death about what's going to happen later. The people ihave around me though have been a great help. So if you can try to get up every morning and say hello to the day.

John, I'm so sorry for your diagnosis, but glad you found this forum. You will find great support and also lots of answers from very knowledgeable people.

I love your advice: "Get up every morning and say hello to the day." That's a great attitude. My bulbar symptoms have progressed slowly (knock wood), and I'm still functioning pretty well after 2 1/2 years. (Except for my speech, and there are many gizmos that can help you communicate). Sounds like you have a beautiful family for support.

Hang in there.
BethU

[mitmon]

Be brave! You will get through everything you need to get through and so will your family and friends. If you don't know already, you will soon know the depth at which you love the people in your life and they will know how much they love you. You will continue to protect your family and you will teach them extremely valuable lessons about nobility of character and preciousness of life. This is your new purpose; this is what only you can give them. You have the strength for it as no illness can take it away.

I'm a little bit behind you and I've got your back covered...we've also got people up front and on the sides too.

[rose]

Welcome bossman, john529 & mitmon. :) I'm so sorry for your diagnosis(s), but glad you found this forum. There is real genuine support here, Here's hoping for a slower than slow progression for each of you.

[bossman]

thanks for the welcome Me I seem t be going down hill fast.I can still talk and even drive but loseing all of that fast also.

[bossman]

Well went to Mac to see one of the best and first thing he did was pull my right to drive the only thing I had left.He also said this als if moveing very fast through me and may not have to much time left.Im so dam mad I will not get to see my son through some of his life and do some of the things I wanted.

[rose]

I'm so sorry for how your appointment went. Do you have someone to help you with things? (I don't mean to pry, just concerned).

I sincerely hope that you reach a plateau, and have time to come to grips with this. Everyone copes in their own way, in their own time.

Just remember that there are some that post on here that were given very little time by their doctors, but they've proved their doctor wrong.

take care, Rose

[lovelily]

Bossman

So sorry for your diagnoses....:( I understand the sorrow of losing your freedom of driving.

A few years back I had a series of small CVA's. I was reported to motor vehicle. I was not driving anyway, but it took a little while for them to catch up with me. I could go around the block.

A letter was sent for the doctor to fill out, that I was capable of driving....Rheumatologist felt that my leg muscles had not the strength to drive. She said to me. "sorry about this"..

All of these things are too much for you to take in at once.

The people here are so kind and supportive. They bring a smile to your face when you least expect it. I hope you continue to come here for support.

[bossman]

you know people here are nice and I thank you all,but does not make me feel better this doc has no clue how i drive i dont have to move my leg to drive.I have big feet all i do is move my foot back and forth from brake to gas no trouble.They let some one with no legs drive or people with no hands so why not me why am i so different.

[Al]

I'm surprised they brought up the subject of driving. No one at my clinic ever mentioned it to me. I guess they figured if I walked in then I was OK. I heard that you can appeal it but you'll have to do a driving test. I've never asked at the MOT though so it could be BS. I knew when it was time to quit. A friend came over one day with the new sport touring BMW and asked if I wanted to ride it. I really did but knew my legs couldn't be guaranteed to keep me up at a stop and I didn't want to trash the only demonstrator in Canada. You have to accept your limitations. Think about the things you can still do. It'll take time.

AL.

[bossman]

well will not take to much time because I cant do to much other then sit.I do have a few friends who want my bike mind you so may go to good home and as far as driveing hell with them.

[joelc]

Hi Bossman,

Don't take what your doctor said too seriously! When I was diagnosed my doctor told me I had less than 2 years to live and told me that some people might try to talk me into getting a feeding tube (PEG) and a Tracheostomy and vent in order to extend my life. Then he spent a disproportionate amount of time telling me why I don't want to do this, he actually was successful talking me out of these life saving devices for awhile.
I have had ALS for almost 4 years now and I do have a PEG and just got a tracheostomy and vent. I can tell you that getting these things is not a big deal and I have fantastic Quality of Life! You can definitely stay around to see your kids grow up! Don't let anyone tell you different!

[brendapals]

Joel-
You are such an inspiration! I have many people, every day, ask me "are you sure you feel ok", or "how are you doing-since it's fatal and all", and I continue to revel in my "PMA"- positive mental attitude.

I think that will carry us quite a long way, don't you?

Have a great week,
keep the faith,
brenda

[joelc]

Hi Brenda,
I totally agree with you!

Have you ever noticed that there is a common element that all longer living PALS possess.
That common element is a positive attitude!

May God Bless each and everyone of us!

Joel

[brendapals]

Joel,
As my mother used to say, not because of MS, perhaps because of dementia:


Amen, brother Ben,
Shot a goose,
And killed a hen!

I always laughed at that, and never really knew why! Now my kids laugh when I say it, but I just laugh right along with them!

My best to you and yours,
brenda

[jonsjr40]

HI my name is JOHN

I haved als for 17 years. Ihave been lucky I just had a grandbaby. im very happy. Im only 47 I have a boy 18 and girl 22 . the best advice i can give u is keep your head and work out thats what i did I just got my first pc its best thing I ever did will good luck .
heres my email if you ever wonted to talk jonsjr40@aol.com