Gretchen
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  • Will be at the VA hospital tonight for a sleep study and Bipap training.Sorry to hear about your cat and good luck with your new dog,I cannot walk anymore so the days at the beach are over,so sad about that.The hospital is in Charleston 100 miles south of here,at the meeting we will also be talking about a trech,my breathing has not been that good.Have a good day.-------------Hugs Ken
    It takes time to come up with a plan Dear One. This is huge. It's normal to be devastated for awhile.
    Love and comforting thoughts from me to you.
    Marta
    I wish I could give you a big hug. I know when it's new (and you've been through so much with losing your parents) it's hard to get hold of your emotions. I'm so sorry you have to go through this. I try to look at it as an evolotion and an adventure. Try to keep living life. Don't let this consume you. Try to make life as normal as you can. Look for beauty and joy. There really is a lot of it. I'll talk to you soon little Sister. xoxo
    Yes it truly is frightening Gretchen. There are support groups all over the US. If you Google ALS at http://www.alsa.org/community/support-groups/ and enter your city and state in the search engine there and find a group near you they are a tremendous help and know every every thing about ALS. We learned more about what to do, what doctors to see, they loan us equipment and make recommenations more than doctors do. Sort of like this board but face to face. We cry and laugh together. We can call them at any time, our group leader e-mails us frequently. It's PALS and CALS in my group but there are groups for just CALS as well.
    She was being treated for very severe RA,they had her on very dangerous drugs and infusions.When we moved here they did more testing and they confirmed she had Lupus,at that point her liver was gone,5 years of wrong meds.My daughter Wendy has moved in with me and she has two daughters and they are my team.No I am not depressed,I have had a blessed life.Good luck with your sister.
    --------------------------------------------------Hugs Ken
    If you look at things unemotionally, life is a death sentance. We need to make it the best life we can while we can. Give her a little time. It's a huge thing to realize that we really don't have much control except for our hearts and minds. I hope she makes peace with herself. Life really is good and we really are blessed. Do you have any other family to help you help your Sis? You're very strong Gretchen, but in my opinion, you could use some help with this Dear One.
    Hi Sweetie,
    Can not see the ocean from here,I live 12 miles from the ocean,My dream was to live here with my bride Kathy and enjoy the retired life,2010 was bad year for us.I lost her and 1 week before she passed I was dx So sorry about your Mom and sister,we had a cat that came down with cancer,he was 22 and had 3 surgerys,did not make it.-----------------------Hugs Ken
    Hi Gretchen! It's important that she keep her appointments. They might have a stinkey personality but they can point you in the right direction to make life easier. If she can't stand him, Google neurologists that specialize in ALS. That's what I did after seeing 3 previous Neuros that weren't a good fit. I love mine now. Don't need to see her often. I have a great team in all my doctors. Let me know if I can help.
    Hang in there Babe!
    Hi Gretchen,
    Not a good night,have breathing issues,it is hard to exhale.I was on this afternoon and you were at Pudge44 site,guess what,I rent my house in NH to them and we are friends,her husband Don has ALS,small world we live in.Have good night sleep with sweet dreams----------Hugs Ken
    Also, Neurologists have as much personality as an old potato. She needs a Neuro that she can tolorate, a good pulmonologist and a Primary Care Physician for now. The Neuro will recommend things as needed like a Physical and Occupational Therapists, Endocronologist,etc. as needed and if they don't, ask about them.
    Much love,
    Marta
    I think most of us have been the touchy feely sort all our lives and have been working on ourselves for quite awhile. When we're blue (which does happen) we stay kind of quiet until we can surface with a smile. The good things about ALS are, you can eat anything that you want, the more fat the better, you can live and enjoy each day, you can really see how blessed you are, your loved ones love you more and harder, you love them more and harder, you see what's truly important and what's not, you'r crystal ball is a little clearer then most regarding the future and you can plan for what's coming, you can make sure your loved ones know how much you love them, you learn to live and love in the moment, sunrises and sunsets are truly beautiful. I could go on and on. I'm looking forward to meeting your Sis and am glad to know you. You're awesome! :) Crying is okay and allowed by the way. xoxo
    My husband is great now, he is supportive and tries hard to leave my illness for my neurologist to deal with. I am fully independent and my ? Pls just causes a bit of spasticity. Hopefully it will stay that way for many years. I work in neurology and dermatology clinical trials, plus I train ms patients to self inject beta interferon.
    Just part time.
    It must be hard for you if your sister is in denial, but I still think you need to be careful not to step into the dr role. Just be supportive and if she is misunderstanding, then steer her in the right direction. There are several forum members here, who have spent months in denial about their AL's, eventually it becomes impossible to ignore it.
    Sure Gretchen it is on the back of the light Karo syrup bottle. A variation. I added a few chocolate chips to two of them add after you pour in pie shell . I also pre cook my pie shells so they will not be mushy. That easy. Simple really
    No tonight they finished up the goulash my husband made from my homemade spaghetti sauce. I could not help my self. Had to have a bite smelled so good. Right now I just took 6 pecan pies out of oven for church tomorrow.
    Hi Sweetie,
    South America is a great idea,I am having a good day.Beautiful here today and will be warmer tomorrow,like to drive around on my PWC on days like this and have 115 miles on it.Hope your sister will be happy and want to go!Name of game now is Enjoy Life to the Max.
    Hugs Ken
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