newly diagnosed and just sinking in

[jimmylee]

Hello all my name is Jim I was just diagnosed with als and it's just sinking in.So as some may know it's a little scary and worriesome i'm looking for as much info as possible because i've ignored the symptoms for quite some time, My prayers are with you all. Thank you

 

[TBear]

Sorry you are here Jim, but welcome to the forum... There are many of us here who are dealing with or have dealt with ALS over the years and can and will help out as you need it. Don't be afraid to ask... and keep your sense of humour!

T.

 

[janf]

hello & welcome

Hello all my name is Jim I was just diagnosed with als and it's just sinking in.So as some may know it's a little scary and worriesome i'm looking for as much info as possible because i've ignored the symptoms for quite some time, My prayers are with you all. Thank you

Hi Jim sorry for your disapointment we all really understand what you are going through . We all are in denial in the beginning, because, we can't believe it could happen to us.. It's hard but it will get much better. Read read you will get so much info here and be sure to ask questions ok. JANF

 

[jimmylee]

janf

Thank you for the welcome, new to site not really sure if i'm using it correctly. Words of incouragement always appreciated.

 

[Al]

Hi Jimmy. Looks like you're getting around the site OK. Welcome. Sorry you're here but glad you found us. Hope we can help. AL.

 

[liz]

Hi Jimmy -

Welcome.

Are you referred to an ALS Clinic yet? I just came from my first visit since I was diagnosed. I feel better just finding out there is someplace where they provide the comprehensive and specialized care I need. Everyone there was epecially understanding of my concerns and had answers to my questions.

Sorry about your diagnosis but at least you've found this forum for support.

Liz

 

[jimmylee]

liz

I have been referred to U.C.S.F here in ca. for a second opinion, I also have a cousin in santa cruz who is a neuroligist. I just sent him all my test's, he's willing to go over them and do all the test's himself to insure a proper diagnosis. thank you for the support GOD BLESS ALL

 

[liz]

Hi Jimmy -

Sounds like you are doing everything you need to do.

I found the waiting incredibly stressful. How are you holding up? Are you working? How's your family reacting?

Liz

 

[MtPockets]

Hi JimmyLee,
I'm glad you found the forum. If you have any question please just jump in with them. Most of us have been where you are right now and know how knowledge won't make the ALS go away, but at least it will let you know your enemy and prepare for the battle.
The most common point it seems most of us come to eventually, is we learn to live every day as if it's fullest. Enjoy our friends and family and do some of those things we put off doing for years, like make a special trip someplace. Do something special for yourself and family while you can still get around, if you can. I'm in a motorized wheelchair now and there is so much I wish I had done before I got to this point. I always wanted to visit the volcanos on Hawaii and make a trip to Israel to see the land of the bible. Now without supernatural help that will never happen.
Live your dreams now and enjoy the life you have each and every day.

God Bless,
Capt. AL

 

[Pollyanna]

Hi Jimmy Lee,

First, let me join the others in welcoming you to the forum. It's a great place to share your joys as well as your fears and heartaches. The thing is that you really don't have to do a lot of explaining here...everyone of us can relate to what you are going through, and we are all at different stages of the process, so there will ALWAYS be someone who is right where you are and can share your burden better than a lifelong friend. It's truly amazing the comfort I've received, and the insight, perspective, information, encouragement, laughs...needless to say, this sight has met a very significant need in my life, and I pray that it will do the same for you.

Let me also encourage you to join a support group (live and in person) preferably one sponsored by the ALS Association. Hopefully there will be one in your area, and it's just really great to get together with others who are in the same boat, and you don't have to deal with the emotions of family and friends who want to help and understand, but they just don't know how. Not their fault...just a reality of life in the ALS lane!

I'll be praying that God will give you peace of mind and comfort your heart as he calms your fears. That's what he has done for my husband and me, and He will do it for you too.

Have a good day.

 

[scuba]

me too

I too just found out Jimmy, and it is very confusing. I have always been in such good physical shape, and the thought of what is to come is pretty scary. However, with good friends, loving support, my faith, I hope that I will come out of this well. There is so much to think about, so much to say, but yet hard to focus on all of it at the same time. My symptoms are voice slurring, twitching in the upper body, and some minor swallowing problems. I also have done some muscle damage in my right arm. I keep thinking I will wake up and it will all be ok! Glad to have this forum to express our worries and concerns....and of course encouraging words!

 

[Paty]

Welcome to the group jimmylee

Like everyone else on the thread I welcome you (TO OUR LITTLE HOUSE ON THE PRAIRE), were you will find lots of friends and words of encouragement on the disease we all share, some as PALS, some as CALS (caregivers) like on my case.

I really don't know what else to say, I am from Baja California, Mexico, and sometimes I don't find the right words in English to express myself.

God bless you and your family.

Paty( Baja California, Mexico), Husband's caregiver

 

[MtPockets]

Welcome to the forum Scuba. I too was very active before, work-a-holic, tennis, golf, scuba diving, fishing, bicycling, name it I probably tried it. Remember you are not alone, we have all been there one way or the other.

After you have had time for it to sink in and reflected on WHAT NOW?
Live every day and focus I mean on living. Do the things you wanted to do but have put off waiting for a better time. This is the that time. Before you get too weak travel, visit places and friends you have always wanted to go see or do. Take advantage of making memories for your family, friends, and for you.

If you never took the time to consider what is REALLY important in your life, now is the time. I encourage you to make your peace with God and with family and friends. Our clocks are ticking every minute, closer to the time when we will pass from this life to the next.

There is truly a God and He loves you and knows just where you are, trust Him. He is faithful to bring you through this with a wonderful testimony of His loving grace. He has a plan for each of the days you have left. You are not alone.

I pray His angels are encamping around about you and delivering you into His peace during this most difficult time in your life.
To God be the glory, for great things He has done.

God Bless,
Capt. AL
God's servant till the end.

 

[TBear]

Welcome Scuba:

Sounds like you have your priorities in order but don't hesitate to vent here when you need to. I see you are from Kelowna... too bad for you. You've been living in heaven all along... except during forest fire season.

CHeers
T

 

[musicsmiles]

Musicsmiles

Welcome Jimmielee
You are in my thoughts and prayers. It is a very long hard rough road ahead. We are all here together with the same problems, just different levels, and we are here for you. This forum is a lifesaver for me. If I have worries, questions, concerns or just need to talk to someone...I use this forum...that is what we are here for. Hope to hear from you soon and take care

Musicsmiles (it really does)