Just need to talk

[Laurie Staller]

Hi...I've never been a member of a forum before, but I felt I needed to talk to someone other than a family member. My younger sister has been diagoised with ALS. My husband and I took her to the Mayo clinic last July, in hopes of finding a diagnoisis. She started with muscle weakness approx. 6 years ago and was wrongfully diagnoised with M.S. The M.S. doctor sent her for further testing in London, Ontario, but they never really came up with anything concrete, except to say that it was some kind of Neurological disease that would only progress. (They never really stated that it was ALS). That was when we took it upon ourselves to get my sister to the Mayo clinic in hopes of a cure or even just a firm diagnoisis. That diagnoisis was ALS. The progression up to this point has been slow...really affecting her lower limbs. She has a constant cough, contant heart burn and indigestion and now she is having shortness of breath. I feel that the disease is starting to progress faster. She has now had it, going on 7 years. I'm really trying to stay strong for her and her family, and have really tried to address each symptom as they arise, so that she can be as comfortable as possible. The drugs do help with some of the symptoms, but since she has been getting worse, the drugs aren't doing the job anymore. I find this the hardest.....I just have such a hard time watching and not being able to do anything when another awful symptom strikes!
She is in denial about this disease, and won't admit she has ALS. I don't know if she'll ever come to terms with this or not and that is the hardest part. I want to get her some help...books....forums whatever it takes to get her as much support as she needs. But, as long as she is in denial...my hands are tied. What I want to know, has anyone in this forum delt with the same kind of denial that my sister is going through...and will this change once she is in her final stages. I love her so much and want to help her as much as I can. Please help!

 

[haase]

Sadly, Laurie, I have neither knowledge nor wisdom to offer toward your dilemma. My offering is prayers for you, your beloved sister, and family.

 

[Madonna]

Hi Laurie - I have just joined this forum today, although I have often read the posts here. I also need someone to talk to outside my family - perhaps we can ears for each other. I don't know how I can help you, other then to listen and tell you you I understand. My brother was diagnosed about 12 months ago after his voice became slurred and husky. He is slipping so fast before our eyes I can barely take it. We are a close family I am he youngest of 8 kids and my parents have been together 52 years.

We are all living life in a state of constant fear and sadness. I really don't know how we will cope. My brother through it all has remained so accepting and calm - he has a strong faith and it shows. He is married with 3 teenage children - the youngest is in her final year of high school.

Sometimes you just need to spit it all out and knowing that there is someone else out there as sad and as frighted as you are.

 

[luvnmm]

Laurie -

I want to start by saying how sorry I am that you have had to find your way to our forum, but that you have found a wonderful place with fantastic people to find help. It's very sad, being a family member of an ALS patient. My mom was diagnosed back in Sept 2009. I wish I knew how to help you through this. I believe my older son is in some denial about my mom and was told by my therapist that it would take time. That you can't force them to face these things and I have to say I believe that's true. Does she go to an ALS Clinic? Does she have a team that will work with her? My mom goes to the Duke ALS Clinic and has a great team there.

I sincerely hope you find what you need here. I know everyone here has been very helpful to me.

 

[Phil M]

Well Laurie. So sorry you had to find us. All I can say is..denial is her way of coping with it. Everybody deals with it in their own way. I would be willing to bet, that deep down inside, she knows. I think most of us try to find a way to ignore it. It can be too much for some people to live with it on their minds 24/7. All though I wish mine could have waited another 10 years. I have had a really good life, with a lot of adventure, so other than my life being cut short. Its been a good one! When I think about the millions of young people who lost their lives in war. It makes me feel insignificant really. I just hate what it is doing to my loved ones.

 

[Katie C]

Laurie... my husband wouldn't believe his diagnosis... we got him to agree to getting 2nd and even 3rd opinions and eventually he grudgingly went along. As to the research... maybe you could take it on yourself to do the research then give her information as she is ready for it.

 

[aquirk]

Hi Laurie

I am relatively new here as well. My husband has ALS. He's the 3rd person in his family to have it.

I lived in KW for a long time and now am in London (Ont). If you ever want to talk feel free to email me.

Anne.

 

[tdamess]

accepting is something she has to come on her own , one day when she feels another loss of herself she will and then just be there for her

 

[pepsiman]

Hi Laurie,
So sorry anyone has to go through this. My wife accepted the diagnosis easily enough. In fact, she amazed me with her ability to hold everything together. She never accepted that it was going to kill her though. Because of that, she died without saying so many of the things I know she wanted to say. I tried, in those final days to understand and document everything she was trying to tell us but it was just too late. It's one of my bigger regrets. For all the hours we spent late at night talking, we never put together a little something for each of the kids to hold a special memory.
Dick

 

[Laurie Staller]

Sadly, Laurie, I have neither knowledge nor wisdom to offer toward your dilemma. My offering is prayers for you, your beloved sister, and family.

Thank you for your prayers Carol.....that alone is great comfort.

Laurie

 

[Laurie Staller]

Hi Laurie - I have just joined this forum today, although I have often read the posts here. I also need someone to talk to outside my family - perhaps we can ears for each other. I don't know how I can help you, other then to listen and tell you you I understand. My brother was diagnosed about 12 months ago after his voice became slurred and husky. He is slipping so fast before our eyes I can barely take it. We are a close family I am he youngest of 8 kids and my parents have been together 52 years.

We are all living life in a state of constant fear and sadness. I really don't know how we will cope. My brother through it all has remained so accepting and calm - he has a strong faith and it shows. He is married with 3 teenage children - the youngest is in her final year of high school.

Sometimes you just need to spit it all out and knowing that there is someone else out there as sad and as frighted as you are.

Hi Madonna- thank you for taking the time to reply to my message. I'm so sorry you are going through such sorrow with your brother. It sounds like you are such a close family, just like ours is. It is so nice to hear that your brother has strong faith...that is probably why he has remained so calm and accepting. I know my sister has faith as well, but as she is in such denial, it is really hard for me to talk to her about it. My sister also has three children, and the youngest is going into grade 9. They have been so supportive and loving to their mother...we are so proud of them.
I know it's hard not to be frightened and scared....especially when new symptoms are popping up everyday. Try to stay strong for your brother and his family. That is what keeps me going....I know I can't help my sister get better, but I can help with keeping her comfortable, keeping her spirits up and helping her family. It's so nice you are close with your brother.....you will always have those wonderful memories...spend as much time with him as you can...and enjoy every second of that time! My prayers are with you and your family Madonna. Keep in touch...

Laurie

 

[Laurie Staller]

Hi Laurie,
So sorry anyone has to go through this. My wife accepted the diagnosis easily enough. In fact, she amazed me with her ability to hold everything together. She never accepted that it was going to kill her though. Because of that, she died without saying so many of the things I know she wanted to say. I tried, in those final days to understand and document everything she was trying to tell us but it was just too late. It's one of my bigger regrets. For all the hours we spent late at night talking, we never put together a little something for each of the kids to hold a special memory.
Dick

Hi Dick, I'm so very sorry for your loss. My sister was also born in 1962. Dick, please don't regret not putting something together for the kids to hold as a memory. I'm sure they have plenty of great memories of their mother and know exactly how she felt about them. When your going through such a horrific time with illness, stress and the emotional rollercoaster, sometimes we don't always think of everything. I'm sure each one of your kids already holds a special memory of their mother. I wish you nothing but good things Dick and hope you and your children have found the courage and strength to live happier days....you are in my prayers!

Laurie

 

[Laurie Staller]

Hi Laurie

I am relatively new here as well. My husband has ALS. He's the 3rd person in his family to have it.

I lived in KW for a long time and now am in London (Ont). If you ever want to talk feel free to email me.

Anne.

Hi Anne-

So sorry about your husband. How long has he been diagnoised with ALS? When we took my sister to the Mayo Clinic, they told me that they were pretty sure it was a hereditary gene that has caused her disease as well. I would like to do more research into it. I also live in KW...actually have lived here all my life. Please feel free to e-mail me too Ann...anytime.

 

[Laurie Staller]

accepting is something she has to come on her own , one day when she feels another loss of herself she will and then just be there for her

Thank you for taking time to reply. I'm sure your heart is breaking. My prayers go out to you, your son and your family. I just didn't realize that ALS has affected so many.....very sad.

Laurie

 

[aquirk]

Hi Laurie

His initial symptoms started in July 2009. We had a feeling right away what it was especially because of his family history and my husband was very aware of ALS. The doctor initially diagnosed him with PLS because there was no evidence of lower motor-neuron involvement. His latest EMG in March of this year showed evidence of lower motor-neuron activity so his diagnosis was changed to ALS. It wasn't a surprise for us because as I mentioned both his father and one of his sisters died from ALS. So far it has only manifested itself in his speech.

I lived in KW for a long time and really miss the area. It's a great community. I grew up in Guelph so that area is home for me. I would love to chat with you so feel free to email me. I'm sorry that you and your family have to go through this.

Anne.