Hope your having a good day,did stop in and say hi to Alice.We have had some good weather here,the days going to the beach are over,I can hardly walk anymore.ALS is so much fun.I wish you and your sister the best,have good night,sweet dreams--------------Hugs Ken
Wonderful to make fun plans! Sounds great! Polar bears? Yikes! Exciting!
Ken and Ali are good and loving and gentle people. I'm glad they reached out to her.
We are having a very good time here. I just adore my family. They are the best. I don't know what I'd do without them or my husband. Family is so important and I can tell you feel the same way.
Much love to you and yours Sweet Gretchen!
Hi Gretchen! Just checking in on you. How are you and how is Alice? I'm still in TX. I'll be back in Colorado Saturday. I hope you are doing well and that
Alice is strong. good thoughts from Texas!xoxoxo
Dearest Gretchen. I am more than happy to friend your sister. I am having a little forum holiday. Getting a grip on my obsession. But I am checking visitors messages and private messages every couple of days. I am feeling a better sense of self control so will be back in a week probably.
Hahaha! I love it!! We are having a great time. I pray that you all will be able to laugh and reach a point of normalcy very soon. Just give her a little time to adjust. It's huge so will be pretty bumpy at first. I thought of it like a little roller coaster ride. I think you are fortunate to have each other. I don't know what I'd do without my husband, family, friends, and my forum family of which you and Alice are a part. We can do this together and do it with love and grace. I'll talk to you soon Sweet Vona.
I am in Texas right now partying with 5 of my sibs and my Mom. We are having a great time. Do fun things with your Sis when she is in a good place for that sort of thing. We laugh a lot. Sometimes we cry. It' all good.
Love to you,
I know Sweetheart. It's so hard. I wish I had a magic wand to take the pain away. I was diagnosed in December 2010 and it just took the air out of my lungs. I couldn't breathe. It hurt us all so bad we couldn't stop crying. You're right when you say it's hell at first. Emotions level out somewhat after a time. It's the new normal. You work really hard to stay the same person and not let it eat you up. You cry occasionally but not all the time like at first. You mourn each loss but if you can stay strong and as positive as you can it makes it easier for everyone that cares. You just take it one minute at a time, laugh at every opportunity, try to be as normal as possible. Don't become ALS. Be yourselves while helping your sister. Just love each other. This is just life.
Have missed you and sorry about all the bad news your family is going through.I know it is not easy and no cure,pray your sister has a very slow progression.I had a fun day today at MUSC,I was given 18 injections of Botox to manage the drool and all the jaw spasms I have.Hope it works.I wish you and your sister the best,enjoy all while you can.-------------------Love Ken
Hello Gretchen, I am sad about your sister's diagnosis. This is why I am throwing myself into this ALS-Treat Us Now steering committee. We need access to these drugs that slow down the progression of ALS, to buy us more time. Here is one of our slogan"s : Wheelchair handouts or drugs that can slow down disability?
It is obvious the later is more important... we must all, pals and cals work for compassionate access for these drugs. I am scared too: I am losing trunk and neck muscles and my right hand is going, my speech is going, swallowing is going, legs are going. How do I stay calm and mostly happy? I dont run ahead to what is to come...I stay in the present moment and be grateful for what I still have...otherwise you ruin
TODAY...and that is all really any of us have...((hugs))
I am doing ok,every day ALS takes something away.Ann was very special and a true blessing to this site,we will all miss her.My grandaughters are both in HS,Jackie turned 18 on the 12th and Rachel is 15.I am so proud of them,both get all A on the report cards.Have a good night and enjoy.
Hi Gretchen! I hope your Sis does go to the ALS clinic. They can help her get through this a lot easier. When you say she's reconsidering do you mean she might go or might not go? I hope she goes. She'll live longer and more comfortably. There's no sense in makeing things harder for herself. Here's hoping she goes!
Ann is one of the most loving women in the whole world. Phil is her wonderful husband who loves her. Ann's relationship with God and Jeasus was her strength and it is a mighty strength. She went through this monster with Grace and sweetness and was a great comfort to everyone here and to everyone that knows her. She is greatly missed and we are all heartbroken at her passing. But I still feel her and aspire to be like her. Ann was one of the first people to befriend me here and comfort me and show me that there is joy in every situation.