I have experienced great kindness over the last week. It’s so easy to feel bitter, especially with ALS. It’s easy to get frustrated with somebody complaining of something they have to do when right now I so wish I could. What I have to do is keep reminding myself I haven’t always had ALS and I could win competitions whining about everyday things. Honestly I’m not really mad at the person complaining. It’s more so a feeling of wishing I could still be in that position. I know most people in situations similar to mine will understand this feeling.

It’s easy to start thinking nobody cares. I’ve been proven otherwise lately. My gofundme page has brought me to tears. People I don’t know have sent their money to help. People who are struggling themselves and in need of something. If it’s not from family or friend of family it’s someone else who truly understands the need of a wheelchair van with ALS. It’s also been surprising to have people sharing and spreading awareness. Anybody reading this who has given or helped spread awareness I want to thank you from both Tony and me. It’s hard to express the gratitude and the excitement of easy and comfortable transportation in my future.

As if that isn’t enough, yesterday, Tony, my Mother and nephew drove a few hours to pick up a nice king size tempurpedic bed. It was from a family who lost a loved one to ALS and wanted the bed to go to a pALS. They could have easily sold the bed but chose to give. The bed is so comfortable. It’s adjustable for raising head or feet and it has a massage feature. We are so grateful.

Being at the receiving end of such kindness is an indescribable feeling. Believe it or not, and I’m saying this because I want to stick to being honest as I said, there’s almost a negative reaction in me. A defensive, I don’t want anything if I can’t get it myself feeling. I feel guilt for any negative feelings about my situation. Sometimes a few minutes of anger gets me through a day. I’m realizing I can still do that and I don’t think anyone who has helped will hold it against me, even though that’s what my mind wants to think. I have much progression ahead, so I best learn to accept the kindness of others gracefully and without guilt.

Tony and I have talked even before this past week about when I’m gone. Anything that I have that can help a pALS will be given directly to someone or put in a loaner closet. We will keep it going. That is unless the best thing for us all comes to be first, the cure. A lot of great things happening in research.

Of course plenty of other things going on. I needed to share this now. Thank you to family, friends and complete strangers for your kindness to me and Tony.

Until next time, take care,


  1. You really learn how kind people can be when you have ALS.

  2. Mario says:

    Hi, I have a quick question regarding your site and couldn’t find another way to reach out to you. Please email me at your own convenience, thank you!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s