Lost my brother to ALS

My brother Doug lost his battle with ALS this afternoon, quietly and on his own terms. As per his final wish his brain will be part of a familial ALS research study at U of Mich. Our dad died 40 years and 2 months ago from ALS and, of course, I have PD. Hopefully some good will come out his contribution to the world class research teams working on familial ALS and other neurodegenerative diseases. Damn the disease, but not the death.

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  • I am so sorry for your loss. I am 34 and I have Parkinson's and my best friend since the age of 4 has ALS. Everyone worries about me but all I care about is my friend and hope he lives longer than me because he has a family and his son needs him. I have already dealt with my own fate and i'm fine with it.

  • I am so sorry, I lost my closest girlfriend from ALS, and everytime I would ask her how she was doing, I would get the thumbs up and a huge smile...she was so fantastic. I miss her every day.

    I have PD...and I accept it, and I keep trying everyday to just keep going..........

    so far so good. But in the last few months I do feel the difference and certain easy tasks are getting more difficult. BUT..........it could always be worse and I will keep giving my big smile and thumbs up also......

    Happy Passover and Happy Easter to all !!!!!!!!

  • So sorry, my brother -in-law died of this 2yrs ago, a very distructive disease, my prayers with you at this time. My hubby has had PD for 17yrs and my brother in law was always so empathetic towards him never knowing that he would end up with neurological disease himself. take care of yourself

  • So Sorry for your loss, my Dad died from ALS 6 years ago Easter sunday , such a sad time for you and your family.

    My thoughts are with you

    .

    Al

  • I knew nothing of ALS until I met Jamie Heywood ( no relation ) who lost his brother Stephen. Jamie and Ben started PLM because of Stephen. a good thing can come from a bad one. My best wishes to you. Colleen

  • So sorry for your loss. It sounds like your brother was quite a man

  • Sorry to hear of your loss.

    I also, lost a dear friend (former roommate) to ALS. She was told she had ALS 9 months after I was told I had PD. She lived 10 months, died on the day my 1st grandchild was born.

    I didn't know much about ALS or PD. I thought I would be right behind her (and possibly so if my meds hadn't been changed).

    I also hope the University will learn something that will be life changing for others.

  • Please accept my deepest condolences. I am glad your family is respecting his wishes to use his brain for research. That was a very selfless request from him. God bless you and your family.

  • Please accept my condolences. Your brother sounds like he was quite a special person.....as you are also.

    This life may not be easy, but it is "worthwhile". Draw strength from your faith. Your brother's battle is over...he fought the good fight and is now in the arms of our heavenly father...."Stay Strong".

  • Thank you all for your heartfelt thoughts and prayers. We are not alone, none of us. Your stories are comforting. I really didn't wish him one more day of life in the state he was in. It would have been selfish and cruel to do so.

  • NanCyclist, I am so sorry for your loss. ALS is a cruel disease and I am glad to hear you say it would be selfish to ask for one more day for him. You are a brave person and I know his passing is bittersweet. Like myself when I lost my sister from ALS, I was sad she was gone, but happy to know she was no longer suffering. I pray in the days to come you continue to find comfort in knowing he is no longer suffering and has finally arrived at long awaited homecoming. As we have talked before, our lives are very similiar with ALS and Parkinson's. If you need someone to talk to you know you can count on me. Just send me a message.

    Again, you have my condolences.

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