Forum Replies Created
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riley
MemberKathy,
I am very sorry for your loss. I’ll keep you and your family in my prayers.
Nicole
MemberMargaret, you and Luke are in my thoughts and prayers. God bless, Nicole
MemberJon,
I’m so sorry for your loss. I’ll be praying for you and your four boys.
Nicole
MemberCaroline, my prayers are with you and your family.
God bless,
NicoleMemberRobin,
I’m very sorry to read of your loss. I hope your memories of your father will bring you comfort. My prayers are with you.
NicoleMemberCaroline, my prayers are with your dad, you and your family.
NicoleMemberHi Marsha,
Happy Birthday to you! I’m so happy for you.
You sent me a beautiful email when my father was so sick during his last week. You knew exactly the things I needed to hear. I’m sure that whatever you say to your donor will be heartfelt. She’ll feel the depth of your gratitude. And sometimes a hug says those things that words can’t say.
Keep us posted and let us know how it goes.
Nicole
MemberMargaret,
You and Luke are in my prayers.
Nicole
MemberJon,
You and Nadine will be in my prayers.
Nicole
MemberMargaret,
I just found my notes about my father’s tremors. The doctors called it “rigors” and they were giving him Demerol if the shaking went on long enough to cause my father to ask for meds.
Nicole
MemberHi Margaret,
Wicking fabric wicks moisture away from the body, so you’ll find a lot of outdoor clothes made in these fabrics…like hiking t-shirts, pants and socks.
We bought all of my father’s clothes at REI. It’s an outdoor gear store here in the US. I don’t know if you can find them in Toronto, but if not, look at whatever local camping/hiking/outdoor sports store you have. I would think that if you go to any hiking store and ask for their moisture-wicking clothing, they should be able to point you toward it.
Another option would be to order online. I believe L.L. Bean will ship to Canada, so here is a link to a wicking t-shirt from L.L. Bean:
http://www.llbean.com/webapp/wcs/stores/…f eat=ssdpb9541
And here are wicking pants that zip off into shorts:
http://www.llbean.com/webapp/wcs/stores/…=Search&feat=sr
As my father was losing energy and was sleeping more during the day too, he started wearing these t-shirts and shorts all the time. That way, if he napped during the day, he still didn’t deal with night sweats.
wickers.com is another site that sells wicking clothes and underwear. If you google “wicking sleepwear” you can probably find many others. I think there are also wicking bed linens, though we didn’t find that necessary.
I hope Luke is feeling better soon.
Nicole
MemberHi Margaret,
My father had something that sounds similar when he was first diagnosed with MDS. Tremors in his neck, face and arms were one of the first indicators we had that something was wrong. When he’d get tremors, he’d get really cold, but all over, and not just in his extremities. A blanket warmed straight out of the dryer sometimes helped with the tremors.
At times, his tremors went on for hours, and there was a medicine they gave to get it to stop. It was an injection that stopped the shaking within minutes. I can’t recall the name of it right now, but if I can find it, I’ll let you know.
Occasionally, they also couldn’t draw labs because they couldn’t get any blood. It sometimes helped for my father to cough or reposition his arm — if he was lying down, often raising his arm on his pillow above his head helped.
Bec mentioned night sweats. My father had those too when he was first sick with MDS, many times a night, which kept him from ever getting any good solid sleep. The doctors had no answers for how to get night sweats to stop. My sister-in-law and I bought Dad “wicking” clothing at REI…he never had another night sweat. If any of you are having a hard time with night sweats, try wicking clothes or pajamas and see if they help.
Nicole
MemberHi Dusty,
I’m sorry that I don’t know the answers to your questions, but there are lots of knowledgeable people on this website who will probably be able to help you. I just wanted you to know that I’ll be praying for you and Betty.
Thanks for sharing your website with us. Your writing is so sincere, and your love story is truly beautiful.
God bless,
NicoleMemberDi,
You and Scott will be in my prayers. It is scary, but try to stay hopeful and take one day at a time. I’ll pray that the BMB results will give you a pleasant surprise.
Nicole
MemberCarrie,
You and your family have my prayers and my deepest sympathies. It sounds like your father’s passing was so peaceful. It’s beautiful that August 27 was such a special day for your Dad…born into this life and born into new life. I hope your memories are bringing you peace.
Love,
Nicole -
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