ALS Diagnosis Confirmed

[hope]

It has now been confirmed by Dr. Michael Strong that my husband does have AlS. We have had two other opinions but were waiting to see this doctor because he is an expert. We felt the same way as we did six months ago when we were told, shock, disablief and pain. We prayed that it would not be ALS but sadely it is. Now we have to accept this and sit back and take a moment to gather our thoughts. Thank you everyone here, you are all wonderful, caring people. What would we do without this place? As hope's wife I can honestly say I am scared. He recently had to retire at forty eight. It was not supposed to be this way.

sandy.

 

[Al]

Re: Diagnosis Confirmed.

Sorry to hear the results Sandy. Fear of the unknown is a big part of this disease. My GP told me on hearing of my diagnosed to make a list of the things that I hadn't got around to doing because I was too busy or whatever and start doing them. Having to retire early makes it more difficult but I think it was good advice. I didn't plan to be unable to work at 53 either. We had some plans that had to be altered. You have to roll with the punches and take each day as it comes. Take care Al.

 

[hope]

Re: Diagnosis Confirmed.

Al thank you for your kind words. I am so sorry you are going through this also and everyone here. I started to come to this site a while ago to try and give and recieve support. My husband has posted a couple of times, he is depressed. I am trying to encouraged him to come here more often. I have battled an illness myself for many years and my husband my best friend was always helping me. He says he will be strong because he says the strenghth he has seen in me with my illness gives him strenghth. I am still ill but we will find a balance with both of us being ill. We just have to fight harder. Thank you again for taking the time to reply.

sandy.

 

[wewillbeatthis]

Re: Diagnosis Confirmed.

Hope,

I have read your post, and wish we were meeting under happier circumstances. This disease sucks no question about it. It is such a strange disease... However, I do believe that is is a disease that the health world is working hard to find a cure or at least a way to stop the progression... Please have hope and continue to have the strength for yourself and your disease and the strength to take care of your husband. However, always remember to take time to take care of you as well...

You will find that this disease brings you much closer together that is for sure... Love one another and do as you say take it one day at a time... The truth of the matter is that the way he is today is the way he can be for many years to come... Have Hope and Believe that he will beat this...

Jen

 

[ladave]

Re: Diagnosis Confirmed.

Hope,

I am 49 (will turn 50 next month) and was given my initial dignosis 3 weeks ago. So I can really relate. I'm trying to decide whether to keep working- I'm an attorney so a lot of what I do can be done via computer. I always thought how nice it was to have a profession where I could keep working part-time as I got older. Seems life had other plans for myself (and for your husband). But then, as John Lennon wrote in a song just before he was killed, "life is what happens while you're busy making other plans". At least he is lucky to have you to support him, I live alone. Hang in there!

Dave

 

[hope]

Re: Diagnosis Confirmed.

Dave,

It is nice to meet you, sorry it is under these circumstances. Thank you for your kindness. My husband had a hard time deciding whether to keep working or not. It hurt him deeply to have to do this but I said to him one evening, your job has alot of responsiblity, you are in management and the stress alone would be so difficult to cope with. He would exhaust himself to the point where he did not have time to enjoy things he loved to do. I said to him if you retire now you can do things you love to do, you could stay healthier by eating well, resting when you need to, not have the stress, and take time to heal the body physical and mentaly. I think it takes alot of work just keeping the mind and body well. This is a job in itself. Wake up to life in the morning knowing that you can do things you like to do and not worry about the hospital where he had many many pressures. I believe this illness tears at the deepest level of one's soul and one needs to take the time to heal within. Wake up in the morning and see the sunshine, feel the sunshine and let nature heal after all if the enviorment is partly responsible for this illness maybe the enviorment could heal. Lots of fresh air, lots of good food, look in the mirror and wrap your arms around yourself and hug yourself and say today I need to look after me. Dave again thank you for your reply.

Sandy.

 

[A Daughters Love]

Re: Diagnosis Confirmed.

Hi Sandy, By far the best thing you can both do is laugh, find anything and everything that makes you laugh and do it, laugh, laugh, laugh. When you are laughing ALS is the farthest thing from your mind, and as they say laughter is the best medicine. It certainly makes my Mom have good days when we have a good laugh.
Our whole Family went on a vacation to Mexico when we got Mom's diagnosis. Mom and I were walking into the ocean( I was helping her) and we got stuck in the waves and couldn't move, we couldn't turn around and we couldn't keep going. So we just stood there and laughed, we laughed so hard I though I was going to wet myself. The people watching us didn't know what to do, they looked at us but were unsure if we really needed help or not because we were laughing so hard. It was the funniest thing. We still laugh about it now and it reminds me how important it is to laugh.
I to am sorry you have to be here, but it's the most comforting bunch of people I have never met. You are in my prayers!

 

[Carol Deboer]

Re: Diagnosis Confirmed.

Hi Sandy,
Sorry to hear that it is als. But, glad that you found us. We can be a crazy bunch here, lots of laughs and even some tears. You will find that you will find your way, we did. It helps that you live each day to the fullest. I agree with Al, do what you can, while you can. Man, Al even went skydiving! Nuts I tell you, but, that is something he did while he still could and I tip my hat to him. Educate yourselves and believe that a cure is around the corner, I still beleive that one day there will be a stop to this cruel diesease. While you alive you have to live. Life is what you make of it, even with the adversities you will face. Good luck, and as a wife of a als husband I will try to help you out the best I can. I am available anytime. Bless you all.

Stay Strong, Carol

 

[dana]

Re: Diagnosis Confirmed.

Hello Sandy,
I know that when the doctors told my dad to do all the things he had ever wanted to do now because next year would be a different story, it was really hard to hear. I felt like the death sentence was right around the corner. But, you know what, they were right. We went to Hawaii in September and had the best time. Now, dad is on a trach/vent with a feeding tube, and the idea of traveling just seems impossible. I am SOOO glad that we took that trip to Hawaii. It will be a memory that I hold onto for the rest of my life.

Also know that it is o.k. for your husband and yourself to go through some depression. It is actually kind of healthy to get those feelings out. If it becomes chronic, that is when it is a problem. It is totally normal to feel sad, angry, depressed, and wonder "why us?" Until you face those feelings, you will not be ready to fight. We are facing those feelings all over again since dad has been in the hospital. It seems like once we have a good cry, we all feel somewhat better.

Never give up hope and have faith that God knows what is best for us all. I believe in the power of prayer, whether it heals the sick or gives us comfort during a difficult time. You are not alone in this. Hang in there.
GOD BLESS,
Dana

 

[hope]

Re: Diagnosis Confirmed.

Hello, I would like to thank everyone for there replys, you are a wonderful, caring group of people and together we can help each other. I feel better just knowing that the battle I have ahead of me with my husband will be a bit eaiser with all of you here. It breaks my heart to look into his eyes every day and see the pain and sadness. A beautiful man with a heart of gold does not deserve this and no one hears deserves this. I remember my husband holding me up when I was so sick I could not hold myself up. I could not hold a pen in my hand or function hardly at all. He worked with me day after day to help me be strong again. I will hold him up now, I will hold both of us up. I also would like to bring more awareness to this disease and help others who feel like we do. Together we can all make a difference and that is what life is all about loving anc caring for yourself and your fellow man.

Sandy.

 

[Bugsy]

Re: Diagnosis Confirmed.

I was diagnosed in July/05 @47.One of the first things we decided to do was to take a family vacation.My boys[15,13,7]had never been on a plane.Unfortunatley the two older boys play rep hockey,which can get costly,we simply couldn't afford to go.It was more important to me for them to play.To be honest,I love watching them play.My neighbours friends and co-workers at Bell Canada had bake sales,draws and donations[we never knew a thing!] and to our surprise presented us with a trip to Cuba!My kids still talk of the November trip.It was wonderful.I couldn't do the trip now.My legs are getting worse.Stairs are a nightmare.What I think I'm trying to say is,don't put anything off.Go do what you can.NOW.The good memories will help smooth out the rough times.
Best of luck,Doug

 

[TBear]

Re: Diagnosis Confirmed.

I took my wife on a vacation to the Carribbean when she was in a wheelchair. It was not a simple process, but one I would do over again. Most of the places we went to were not accessable but we still managed to go to a few restaurents and to the beach! I took her swimming every day and we sat in the surf drinking wine (she through a straw!) I brought that chair back to the depot when we were finished with it... it still had sand in places that I couldn't clean out!
Do it now while it's easy... and if you can do it often when it's not!

CHeers

T.

 

[Al]

Re: Diagnosis Confirmed.

I was in Santiago de Cuba last year and there were 2 people in chairs there. One power and one not. Talking to them they said that the resort Brisas Sierra Mar was relatively wheelchair friendly. Skyservice Airlines was great with them as well I was told. Where there is a will there is a way.
Al.

 

[lance]

Re: Diagnosis Confirmed.

I too was diagnosed by Dr. Strong just under a month ago, I am not seeking a second opinion because of his credentials. 8 years ago at the age of 30 I went through the same tests, so in the back of my mind there was always a feeling that I didn't escape what has now been confirmed. This disease is terrible, but being positive is going to be a huge part of my routine - it's hard and depression does creep in - but I have a loving wife and a 4 year old son that means everything to me, I am going to enjoy what time I have left, travel is in the near future for us because I wanted to take him to disney while we can all enjoy the moment. The future is going to be trying - but you have to live for the immediate moment.
I have had to change professions and give up my business to work for someone else, but that is just one of the hurdles in life. This site, though I am new to it is very informative and gives me someone to relate to.

live for the day
Lance

 

[dana]

Re: Diagnosis Confirmed.

Lance,
We just got back from Disneyland 3 weeks ago. We took my 2 year old son. We had the absolute best time. Your 4 year old is going to love it! Bring the video camera. There were a couple times I had tears in my eyes seeing how in awe my son was at the different rides. It was also pretty funny to see how scared he was by all of the characters that walk around. We took lots of pictures with him crying next to Mickey, Goofey, Donald, you name it. You will have a great time. Enjoy the trip. You really deserve it.
Dana