ALS Walk - OMG this is real

[shelleynshaggy]

We had our ALS walk in Cleveland today. I am proud to say Team Shaggy was recognized for it's effort. Though we weren't in first, we raised nearly $3,000 in 26 days. We were part of the opening ceremony and our daughter Mikayla, 5, got to kick off the walk.

As I looked around I began to realize how real this is - it is not going away. I noticed how much Jim's gait and walk has changed just in a month. He won't (or can't) relax his arms - especially the right - when walking. We had 18 walkers - 10 of which were friends and new friends (a.k.a. strangers to me) before today.

The walked opened many conversations between me and my family - which was a good thing. My mom and sister had noticed the changes in Jim to - but were hesitant to say something. Turns out my mom noticed his weaknesses starting in December - but put it off to him being lazy then. Seems we pushed so many of the signs off until the last couple months, blind to them then.

Thank God for all of our support from family, friends and strangers.

[GlenBrittle]

Shelley,

Congrats on the walk and fund raising.

I am happy to hear that the lines of communication are opening up between the family members.

I am not one to openly tell someone what is going on with my symptoms, except for Wanda. She keeps telling our family members that its ok to ask me how I am doing. If they want to know , I will tell them , even the gross details. But they dont. They say they dont know how to talk to me. I see thats a common issue with families. PALS are still people . Ya , I dont vent to often, so thank you for being "the one"

Glen

[richmail]

Shelly,

I was at the Cleveland walk today as well. I saw your family, and I was touched.

My dad passed this past May after what seemed like a short battle with ALS. He was truly a strong man. He never complained once during the entire time. I walked today for him. Even though he is gone, he still had the ability to bring us together as a family.

I will pray for your family! Utilize all the support that the ALS association has to offer. They were amazing as we went through all the stages as a family. It was great to not be alone as we dealt with the difficult steps. They have great resources that can help.

Treat every day as a gift - that is why it is called the present!!!

Cheri Rich "Weyandt Walkers"

[shelleynshaggy]

Glen - I hear you. Seems like even my own mom and sisters are afraid to say anything. I keep telling them there is nothing they are going to say that I haven't thought of! My dad's family and some of Jim's family haven't even acknowledged Jim's condition. (I mention my family first because 1) Jim has a very small family and 2) we are closer and usually more in contact with mine - not because I am self centered.) I guess this test will teach us who we can count on. People are afraid to approach me and don't say much to Jim since he has become more withdrawn over the past couple months.

Due to his FTD I am sometimes uncomfortable talking about it in front of him and feel as if I am being a pest bringing up all the time to family. He doesn't discuss his condition barely at all and really doesn't understand it. I encourage him to bring up new symptoms but try not to react to much so he won't stop telling me new occurances. He has no idea what is coming, maybe that is good because he still is enjoying life and not focusing on the future and what it may or may not bring.

Vent away glen- vent away! Sometimes a soap box is a good thing!

[shelleynshaggy]

Cheri -
Did your team have a large picture of your dad on a post? If so, I remember you. It is glad to see that people remember. I couldn't help but wonder how many people will be walking with me if Jim was gone. He may not understand much, but it did bring tears to my eyes when he turned to me and said - wow, people love me!!

It was such a nice day and event.

[fec139]

I have had a team for our NYC and Long Island Walks for 5 years and it is a wonderfully empowering experience. Nobody asked to be a member of the ALS community, but it's a wonderful group of people!!