Support group

[AngelaRenee]

So tonight was the support group meeting. My mom didn't really want to go because she is in pain from falling. I told her I thought she should go, so she did. Although now I feel sort of guilty. Basically the whole meeting was guest speakers (physicians) lecturing about respitory machines and care. Don't get me wrong I was grateful to hear what they had to say and was respectful, but maybe it was a little to early for us to go? My mother didn't seem too interested, I think because it was hard for her to get comfortable. She also still smokes cigarettes unfortunatly. I'm not sure how she does it. Her hands are getting so weak and seem to be curling in. She also mentioned how the others that were there weren't progressed as fast as she was. I noticed it too. Instead of her arms or legs going like others, her hands are one of the main problems. But on a more positive note she wants to go to the one next month and maybe then we will have more of a chance to talk to others and their families. I'm sorry to be so negative on these posts but I really just need to vent. I am looking into depression medication and if that doesn't help I will seek a therapist if affordable. Now I seem to think maybe it was just me who needed the support group and I shouldn't drag my mother along with me unless she asks me to?

-Angela

 

[vickim]

It is good your mom wants to go next month. Meeting people like herself is good and she can ask questions and know she is not the only one fighting this dise ase. It might help you too if you see your mom interacting with others. Its good you are liiking into meds. anything to help. Know we are here to listen if you want to vent or anything thing else. Hugs.

 

[pscheffel]

Angela, I tried getting my Mom to go to some functions, but she didn't want to. So I came here instead, still thankful for this group! God bless.

 

[ottawa girl]

Angela,

You are doing great! Please remember everyone's experience with this disease is unique. One can't compare progression rates. I cannot comment on the support group because I have yet to attend one. Given the number of quality friends I have met on this forum, I don't feel the need to go. Would your mom like to join this forum? It may prove helpful to her. Our joke thread is a pretty good place to start. It could be a safe place for her.

FYI - I got a resting hand splint to wear in an effort to stop the curling fingers. It is cumbersome, but I only wear it at night. Seems to be helping somewhat.

 

[mich5]

I go to a support group. Each month is different - even different people come. Perhaps next month your mother will find someone who wasn't able to make it this month with whom she'll connect. I hope next month will be a better experience for you.

 

[momap53]

I have not had an opportunity to attend a local support group meeting because of the distance involved (2 hour drive each way) my daughter in NY attends one of her local groups from time to time and takes her laptop so we can skype during the meeting.

Our local ALSA isn't very active, in part because of the large rural areas that they serve.
I'm really grateful for the forums since I'm no longer able to get in our car to travel. (we have to rent a van to accommodate my PWC)

Let your mom decide. If she doesn't want to attend, you should go. The topics may not be of current interest for your Mom, but may help you to prepare for her future needs. I found our NY group very open to addressing any current issues if we were having a problem.

Glad that you're considering counseling and meds. They truly help many of us, both PALS and CALS.

Good luck!

 

[AngelaRenee]

Thanks everyone I hope next month is better for us.

 

[Cricket]

Hello Angela

Thank you so much sharing. your mom is very lucky to have you by her side.

This is actually the first time that I post (new member). I knew about this forum but it took me almost 2 yrs to join in. I also went to one support group but got scared because I saw how ALS was progressing differently in others. Knowing that the progression is not going to stop is a lot to digest. I wasn't emotionally ready.* I think that we are all dealing with ALS to the best of our abilities. This journey is so personal. We can only find common denominators. Support groups can be very helpful but I think one has to be ready.*

As a mom myself, I just find that it is not easy to let go of my independence and to let others take care of my needs. The realities of living with ALS forces us to adjust, to adapt and to redefine our roles and our relationships with our loved ones.*I think that we need to give ourselves permission and the space to deal with this the way we want or need to.*Stay strong.

 

[pearshoot]

have been going to support group meetings every month for three years. some group speakers are okay but don't take to long. best part of meeting is social conversation between individuals or group discussions. don't measure yourself against how others look or progress, lots of differences but we all end up in same condition sometimes only months apart. our group is small because several in area never attend. statistics prove remaining active and socializing may extend your life expectancy. remember you may pick up new information that may help you down the road