Going to my 1st Support Group Tomorrow

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Jennifer D

Active member
Joined
Dec 19, 2011
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74
Diagnosis
03/2012
Country
US
State
New York
City
New York
Just got a call today from the visisting nurse who runs the ALS support group in the New York area, she invited me to attend my first support group tomorrow. I have so many emoitions right now just thinking about whether or not I will be able to keep it together. I'm so terrified of what the future holds for my husband during this horrible disease, I'm just sick thinking about my kids having to lose their father and seeing him decline at such a young age.

I hate to admit it, but I'm almost afraid to see if there are other people in the group who have more advanced ALS than my husband. I know he is not ready for this group yet, so I will go tomorrow and hopefully in the near future he will be ready to share in the support group as well.

Sorry for running on like a fool, It's just that when you live every day as normal as possible you can almost believe that this is not really happening and then you get a call from the ALS Association and it knocks the air out of me all over again! :(
 
Go and share and ask ?s and cry. It is all about the support you need no matter what you need. It helps to know people have been where you are now and understand.
 
My wife, who is the patient, and I started going over two years ago. We knew it would be difficult and my wife did cry and when we left our first meeting she said she wouldn't go again. I agreed and told her that I would go because it was a great source of information. Nevertheless we both went back the next month and have been going regularly ever since. The best part is that we made some very good friends over this period and there was also a great deal of laughter. They were the only people who really understood what was happening to us. The sad part is that we have lost many of our friends over this time and that, of course, has been difficult.

The support group has been a good experience and the people with the more advanced disease were the ones that could answer your questions and their positive attitudes about their situation provided a great deal of comfort. At this point, we are the ones with the more advanced disease.
 
I'm so sorry you're going through this with your husband. It is quite overwhelming at first, I know!

Go ahead and try the support group. Mom was feeling the same way before and after her first support group. She said it was scary seeing all the people whose ALS is more advanced than hers. On the other hand, it was very encouraging--all the laughter and kind words and positive attitudes she encountered. There are no support groups available to me where I live, which makes it even harder. You have this wonderful resource available to you. It will be hard the first time, but just try it. You will need (and deserve) all the support you can get.
 
Jen, you are so fortunate to have a support group available to you in your area. And a visiting nurse too! I understand completely your mixed feelings about seeing others who are farther down the road. My daughter attends the Hudson Valley meetings in NY (I'm in GA and there is not one available in our area) She loves her group! They offer a wealth of resources that can help both of you. No one understands what you and your husband are going through like another CALS or PALS. Please take advantage of this opportunity.
 
I am going to my first group next week, but I am hesitant not for me, but for my CALS. Seeing advaced disease will be very difficult for him. I told him that we will get priceless info and hints on dealing with the hurdles. I think talking with other CALS will help him.
It will not be easy, the first time, but I think it is the right thing to do.
 
My husband never wanted to go the support group meetings, because he didn't want to see what was ahead for him. I haven't been either, but the woman who runs the meetings calls and chats with me occasionally. We usually end up talking for at least an hour. She's wonderful. I mainly use this forum as a place to get information, to hear how others are doing, cry and laugh along with everyone here.

Good luck at the meeting and let us know how goes what information you come home with.
 
I was afraid the first time we went support group. Afraid of seeing some one worse off then me. I could walk but not speak. I was worried that I would break down and cry. No one pushed us and we felt comfortable right away. The laughter and compassion were wonderful. I am the only female pal and the youngest there. We lost one member last fall but his wife still comes. I missed group this winter when we were in Florida and am sad I will be at clinic so I'll miss this month too. Doug emails two members often and has received good advice and support. Go when you both are ready. ALS sucks!
 
Hi Deb,
I wonder if your daughter is in the support group that meets in Fishkill New York? If so, that's the one that I will be going to, as far as I know its the only for the Westchester, Rockland, Putnam and Upstate New York area.

Thanks for your kind words, I am having such a difficult day today and it really is uplifting to see everyones encouraging words.
 
My husband was afraid they would break into Kumbaya but no singing has ever taken place. It was a great place to gain information and to make connections. Members are very quick to offer items. After the first time we attended, one new friend drove across the city to bring us a transfer board. After the last group session that we attended my husband commented that he was the "worst" patient that was there. Now he's in the hospital recovering from pneumonia and I know we won't be going back due to his progression. Too hard on him. We made lots of connections and it was a great experience for us.

Good luck to you and yours. Support from your friends, family, this forum, and your own inner strength is essential. My church family has been wonderful and my husband has never stepped through the doors of our church. My pastor has visited at home and during his hospital stays.
 
I was a little aprehensive for the same reason as you. I didn't want to see my potential future. But I won't miss a meeting now. We've learned so much, gotten great recommendations, made some good friends and had much laughter and sometimes tears. My husband feels the same way. I think you both will benifit in many ways from your support group meetings. Best of luck to both of you!
 
My PALS and I have been to three support group meetings and will continue to attend. They are a great source of information. At the last one the topic was the PEG Tube. We watched a video, where given handouts and had discussion. Up to then my hubby was dead set against EVER having the tube. About two weeks after that meeting, he wrote me a note and said he was ready to consider it, to make a doctor appointment - we're going today! We have people there in all stages of ALS and those who have lost there loved ones but still continue to come to support others. A wonderful group. Kinda like here on the forum but in person. Go!
 
I was so happy to "attend" my first Support Group Meeting last night via SKYPE! Baby girl attended in NY with her lap top and KK and I (Snoopy and Max too) from the den here in GA!

Great to meet you Jennifer and Elaine!
 
Okay, so the support group went okay, I did learn alot about the "Loan Closet" and information about technology and how it can assist ALS patients.

Unfortunately, when I got home and confessed to my husband that I went to the support group he got upset and said "I'm so glad you're into this"! Oh Lord help me!
 
Jennifer, try not to feel bad. You are entitled to go and he is entitled to wait or never go. It's his choice. There are soooo many emotions for both PALS and CALS when the diagnosis first comes in - I know because that's where we are. I don't know whether or not your husband will change his mind or take back what he said once he thinks it through, but it doesn't really matter. When he says things like that, - and you know it's not 'fair' - I hope you can let it roll off and move on. It probably won't be the last time it happens. I'm sorry for the diagnosis and I'm glad you're here!
 
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