My name is Brittany and I am loni's 22 year old daughter. She wants me to write to you...she has put up quite a fight with this disease but she is tired and ready to leave our world and begin her journey to heaven. We have a wonderful nurse from a local hospice working with us and with her help we have been able to keep my mother comfortable. My mother is at peace and is tired of suffering. Our family has stayed very close and worked together to be my mother's caregivers over these past few months and we are so thankful for the many wonderful gifts she has given us. My mother sends her love to you I just wanted to give you an update so that you wouldn't be surprised to see that my mother will no longer be posting on this forum.
My daughters are just amazing in how they care for me. Of course my husband too. However he snores so loud and you know us pals it's hard to fall and stay asleep anyways. So my daughters take turns sleeping with me. I need help getting out of bed. I sleep in a sitting up position, but always seem to slide down . I wear my bi pap all night, but it clips on the sides and I have no strength in my thumbs to do it myself. And also they help me with trips to the bathroom. I still can walk a few steps with help, but become exhausted.
The changes that have come and that will continue in my looks scare me! I know my smile has changed due to the muscles weaken. I can't apply my makeup or do my hair, I thank god for my daughters as they take their time to keep there momma pretty! Lol! I have always been one of those women he makes sure she looks good even for the grocery store. Its not vain, It just makes me feel better. My family makes me smile daily, they are so positive!
YOU'VE GOT THE SPIRIT DENNY! These words made my day: "Today is another day of waiting for hope.We become very strong in that process,it's a rough road but I guess it's our special journey!Stay strong! Love You
Your sister in the spirit journey!
Thanks for the words of wisdom Denny...it is catchy, the uplifting of one's spirit...I will pay it forward! How are you doing? I am struggling with my wobbly legs and cramping in my right hand and arm. But I take it one day at a time...dont go too forward or backwards, but practise staying in the present moment, that is really all we have, so I dont want to waste it! Take care
Thanks for pitching in with the petition. the signatures are up. Got a shower with the new shower chair today, had to have more help from my daughter. She lowered the legs for me so I expect to manage a little more on my own next time. I'm enjoying some additional freedom with the removal of a couple of interior doors and the door stop. The PWC fits through just fine now. Change...we just have to learn to embrace it. LOL! What's up with you? Are you getting the support you need from your clinic? How's your outlook? It sure isn't easy. Take care, Deb
It was scary! I wobble when I walk..lol.
My husband is my rock and keeps my spirits up. And I have the best nurses (my daughters) and they keep a smile on my face. And Denny you will never be less of a man! Crying is good for us, we cry for our spouses& are children and of course what lies ahead for us.
We are not alone and none of us here deserve this wicked disease.
Your message was sweet and left me with a smile, thank you.
I no longer can swallow food and drinking liquids is very difficult. Soon after my last post I went to the ER in our small town, i had been coughing all night and had trouble breathing & of course it was time for a peg tube. We were sent to Seattle to have the peg tube placed. My family blends a combination of fruit, veges & protiens in a vita mix. I am happy to say I am maintaing my weight.
Sorry about the loss of strength in your legs. I have also lost strength in my legs, had a fall yesterdy