Supporting One Another

[Chuck Kroeger]

I will start by saying  that the thing that’s frustrating about the forum for  me is that everyone seems to be so different. I’ve known people that have had ALS that lasted 6 months and read posts from others who have had ALS ten years and still able to walk, use their arms, do halfway normal things.  it is been 2 years since I started having symptoms.   I am on a trilogy 24 hours A-day, in a wheelchair and move from the wheelchair to a recliner where I sleep at night, back to wheelchair the next day with very little use of my arms.  I am unable to Push the buttons  on the TV remote,   reach for anything or feed by self.  But I will continue to read the forum and hope to get some encouragement  and maybe be able at times to give a bit of encouragement

[Dagmar]

Chuck – – you hit the nail on the head 🙂 ….ALS manifests differently in each person. And that adds to our frustration in finding “someone like us” to share our story, challenges, and compare symptoms & solutions. Obviously, this also is what challenges research into treatments and cures – – finding a treatment for 100s of variations of a condition.

But, I’ve learned that despite our symptom differences we all are thinking-feeling humans, who do better when we give each other support, space to share and a sense of not being alone.

I look forward to this brand new year with hope in my mind and heart. Amanda is right: “Keep focusing on your physical and mental health! And, please continue to stay active on our ALS forum and support one another.”

 

[Rita Lepper]

I definitely need some emotional support.   Physically,  I am doing pretty well.  The disease has not really limited me in any way yet.  I have had fasciculations for years and never thought anything of it.  I have experienced weakness in my legs for a few years, but attributed it to getting older. The fasciculations are getting much worse and I notice my voice gets weak sometimes. I exercise regularly and feel well, even upbeat most of the time.  For a while I saw very little progression and was beginning to hope I was misdiagnosed.   But I seem to be noticing subtle changes almost daily.  It really scares me.  I don’t know how I can emotionally handle giving up control of my muscles and be unable to take care of myself.  I know that I will have to deal with it, so will try my best to stay positive.

The problem is that it’s  hard to talk to family and friends about it.  I get the impression that some of them think that accepting my diagnosis is giving in and giving up.  And perhaps I will want to give up at some point.  I have been told that I need to have faith to expect a miracle.  I believe  in miracles and would love to have one, but I think I need to be realistic. I don’t want people preaching to me.  I don’t want people telling me I have to remain positive all the time.  I don’t want people pushing their herbal remedies and supplements on me.

I guess they are just in denial at this point.

I know many of you probably have it much worse.   And  guessing everyone goes through this.

T

[Dagmar]

Rita – – You sound like you live in reality and are taking things one day at a time. Bravo!

Yes, friends and family may themselves have a hard time accepting your ALS, and try to have you deny it too – – so they will feel more comfortable about it.

Recently, I’ve come across the term: ambiguous loss – – which seems to apply perfectly to ALS. It’s feeling a loss without having closure, or a clear understanding of why the loss happened. Some of the ways to live with ongoing ambiguous loss are: support groups, fostering hope and celebrating the “now” (or, what you can do).

I’m glad you are a member of our Forum – – where you can find support, hope, and friends!

[Carolyn Barry]

Amanda, thank you and I thank Dagmar, for moderating these forums. They really have been a great help in so many ways!  Chuck, my heart goes out to you, reading all your daily struggles. I know I will be right where you are, and I often wonder where I’ll fall, as far as the pace of my progression. I’m quite limited physically already, though I was just diagnosed at the end of October.  I feel similarly to you Rita, in that I find it difficult to talk to family and friends who either ask me if I’m feeling better, or tell me they are praying for a miracle. I’m told if I just wake up with a good attitude and really try, things will go well. I want to once again, tell them what the reality of having ALS is all about, but it becomes just too difficult to go over the facts all over again. Though I hope I’ll have many years to live, I just don’t know, so I’ll try and take it one day at a time. I am so grateful for what each person posts on these wonderful forums!  You all play a part in keeping me going 🙂  Each of you are in my prayers.

[Kathy stitz]

Chuck, I’m sorry about all the difficulties you are experiencing.   I agree with you that we have differences.  For example, how long we have had ALS, our symptoms, our feelings and emotions, our ways of coping.  However, we can still encourage and support each other and also learn from each other.  Rita, it can be difficult to stay positive when you have ALS.  I have experienced this myself but I guess all we can do is try to have a positive mindset and get support from others who understand what we are going through.