Friend of ALS person

[runner624]

My best friend has ALS. He found out 9 months ago. I am devastated and he is also. He was my running friend, hiking friend, adventure friend. He of course cannot do those things anymore. He has been such a big part of my life it's hard for me to think about life without him. I know it is hard for him to accept this has happened to him. It's everything he was about. He has taught me so much about living life and I just cannot believe this is happening. We have had many conversations and he has accepted his fate. I see him often and I just can't believe his decline. We are living a nightmare. It's hard to just accept the daily decline.

 

[hopingforcure]

I am sure this is a big loss to you as a friend. Your activities defined your interactions.. My advice would be to remember although your friend seems different, he or she is the same person who you did all those fun things with.
I can tell you that your friend needs you now more than ever. The hardest thing for the person who is ill, is when people treat them like they are different mentally. We all get that we are changed physically, but being treated different mentally, well that is hard.
It is evident that you are a good friend, a friend who has cared enough to come look on this forum, that alone shows that you care. Share some memories with your friend, bring photos, watch movies, watch your favorite type of shows together. Share what you would have normally shared physically, mentally. I can see you care, and and it is nice to know that people like you are out there for friends.

 

[Zaphoon]

Hey there, Runner!

I'm sorry to hear about your friend's diagnosis. Here's hoping you can make the best use of each remaining day you have with him!

 

[brooksea]

Thank you for sharing, runner. I'm sure your friend is so grateful to have you there.

Sounds like you will stand by him and help him through this journey called ALS.

 

[laurel]

I am sorry about your friend. You sound like a true friend--so it will be important that you stay close and don't drop away as things get worse for him. That seems to be what happens to many people with ALS i.e. friends disappear as the disease progresses as the friend says they find it too hard to see it happening. I read about this too often on this forum. Please stick by him and his family. They will need you. Blessings to you and your friend. This forum is a great place to come and talk when things are to heavy for you to bear alone.
Laurel

 

[Miss]

I am so sorry about your friend. It was very hard from my husband's best friend to believe and accept his illness. He has, however, been incredible. He comes by to visit, takes him out to lunch, helps me with odd tasks, and just generally includes my husband and makes him feel "normal". That means the world to us. I hope you can do the same for your friend.

 

[Chase_Corin]

I have to agree with you that it is a nightmare to a certain extent.

There are not a lot of diseases in the world today that your diagnosis is so definate.With no treatment options to speak of. Even people that have cancer have a fighting chance these days and even aids is treatable and not always a swift death.

My dad's relationship with his friends has changed. My father used to be a competative target shooter and hasn't been able to hold a shotgun or riffle in years now. But his friend George comes over 2 or 3 times a week and they talk about shooting, nature, reloading and that sort of thing. They even clean brass caseings and reload a little bit. Dad is basically the supervisor in these interactions but he still feels involved.

And really I have to hand it to George he has been the proactive on and altered their friendship to where it is now gradually. His other friends arn't as prevalent in his life these days but they never really were My dad is kinda a solo type personality.

I am not sure if dad and he have talked about the disease because dad is a private person but the way they are around eachother makes me so happy because otherwise dad would be surrounded only by me and mom and all the estrogen would probably anoy him LOL.

I urge you to stay in your friend's life and maybe gradually alter you relationship to better fit his limitations. Maybe instead of running you watch some races on TV or If you go for a hike maybe take a camera with you and become an amature photographer so you can share that with your friend... whatever you do I am sure your friend will be happy just to have you in his life.

 

[runner624]

Thank you for all the support. I remain a close friend to him. I have made photo books of our adventures and we get together often with his many other friends to share stories, eat, drink and laugh. This disease is like a thief stealing the very essence of him. We have had very candid conversations while he is able. We have talked about how he will handle his last days. I just feel so overwhelmed by the loss at the same time I am thankful to have him in my life and blessed that I have this opportunity to share my deep affection for him.

I have not been able to talk to many about this since he is married and I want to respect what his wife is going through.

 

[runner624]

You have some very good advice. Your dad is lucky to have this friend in his life. I will be with my friend until the end. He knows that. I will continue to see him even when he can't drive anymore. I see that you have lived this transition with your dad. You are very wise. These conversations will help me tremendously. Thanks.

 

[Miss]

Open the door for your friend's wife to talk. She might not have anyone that is close enough to him and really knows him. One of my husband's friends has been very good about listening and validating some of my observations about the changes in my husband. It has been such a great help.

 

[Cbell12]

Re: I am also a Friend of ALS person

My best friend was diagnosed in October 2010, and has been declining fast. I can relate to how your feeling, I feel the same way. I hate that there is just nothing I can do to help her! I decided to put together a video of all the pictures of her with friends over the years. Now I am turning that video into a picture book, titled Best Friends Forever. One copy for my friend and one for me! I am also planning a fundraiser for ALS that will be a cocktail party at the Back Bay Bistro, followed by a harbor cruise in Newport. Would you like to help with the event? Take care!

 

[runner624]

Re: I am also a Friend of ALS person

Oh man thanks for posting. I not only feel helpless but I feel profound sadness every day. I really am staying in the moment and take any and all opportunities to be with him as do all of his friends. At the same time I feel time in him fading and what my life will be without him is beyond what I can take however it is happening and I know this is life. I don't know what I could do to help with your event as I live far away from you. But that sounds really fun and memorable. Let me know your thoughts on that.

 

[runner624]

Thanks for the thoughts on this. We have talked. She is a doctor and knows what she is in for in the months to come. Her coping skills are way different than mine. I told her that I will be there in whatever capacity that she needs of me. I will continue to remind her.

 

[kmendsley]

One of the hardest things for me to accept from my recent diagnoses acutally is not the illness itself; it was telling my friends who love me most, that my time with them on this earth is much shorter than expected. In the beginning I actually avoided telling everyone because I did not want to see that hurt on their face. I did not want to be close to people to hurt them in the end when I was gone. In a way, I guess you could attribute my actions much to that of a family pet, say dog, who has grown up with the family and then gets sick and disappears one day under the porch to die alone. Too painful for the dog to show its weakness to the family...just wants to slip away. So in turn, I would say that you are very blessed to have a friend who has trusted you and let you share in this hard process than has begun. I know it is hard as a friend to accept and I encourage you to talk out your feelings with your friend who has als as well. PALS don't always want to be on the ones who have to talk about their emotions and thoughts about dying...we like to hear about what is going on in your life too and how we can still help you! Anyway...there is my two cents...I wish you and your PALS friend best of luck in the future.
Kell Bell

 

[runner624]

Thanks for the input. I agree with you and I know he doesn't want to talk about his illness daily. We do share stories and laugh. He talks about what is going on with me and my future plans and also he tries to prepare me for when he is gone. He is a realist and mostly is matter of fact. I feel blessed. It is such a mixed experience with mixed emotions. Trying to stay in the moment at the same time seeing the decline in him is all consuming. It is a good lesson of how to be in the moment and not waste a single second. He teaches me a lot about living and always has.