abbas child

Dear Ann,
I don't know what to do. My mom is struggling so much, each time she learns something new of what's to come. She keeps praying for a heart attack. I've encouraged her to join this forum, and even made her a user ID while I was up visiting in February. But the confirmation email didn't come through the whole week I was there. Now I'm back home and I can't be as persuasive on the phone.
Her friends don't really talk to her anymore, since they can no longer understand her. I know she's feeling very isolated. She seems to always be putting on such a brave face, for everyone else. I know you must have your bad days too, but it's obvious you rely on the Lord for your strength. I just don't know that my mom has ever had that kind of relationship with Him. I'm rambling (and crying), but I just needed to reach out to someone for some encouragement I can pass along. I pray your day is a good one. Love, Julie

Sorry, boy does that sound like a druggie to you bc it sure sounded that way to me. I will look up Julia when i am finished here. And thanks for your help; it's nice to know I can get good advice from others. You're in my thoughts and prayers, always, Love, Kimberly

My Dear Sweet Ann,
Thanks for the info and I am glad you got some relief and at least we know it's one day at a time. Well the appt went well. Learned a little more...I am not a candidate for Botox (at least he was honest). He said too many contractures + too much = a poisoned me! So I guess I will have that slanted view of society for the rest of my life. It gets hard to type, watch tv, but worse is the sleeping. You probably understand what I mean you move the wrong way and cry in pain bc you tried moving the wrong way. The dr did say I have a gene mutation the lab had never seen before, so I guess that makes me "special"! Woo hoo.He also said he has never seen a case like mine. I mentioned about the other dr took me off the other meds and asked if I could have something to sleep/relax he questioned why I was not taking them. I told him the other dr took them away and he couldn't understand why-me too!
So he was going to talk to him on Monday and give me some back.

I do not use extra pillows,but do not like being on my back,sleep on my side,my oxygen on the finger test was 97 and last month at my Primary care was 97,I felt that lip seal could have been an issue,not to mention the drool.I had my erase board but did not get into it.What is a normal reading?

Thank you,
The doctor thinks I have a slow progression,he said that my strength seemed strong(I can tell you no way close to last Oct.)but he tested every muscle and said I was doing well,the speech gal gave me the swallow test and told me I was doing good,Duke had sent all the paper work and my weight was up,we all agreed my main problem is my right foot drag,I hate the brace I had gotten,they are adding a hinge to it and I think that will help and I will give it a try.My voice is 100% gone.I had my first FVC test,they had some problems with the tester and I had it 5 times,average was 83,have to wait to hear from the doctor on that,is 83 ok? Think we need a chat program on this site.

Hi Ann,
Got back from Charleston today,had a very good visit at MUSC with the ALS team,they tested me from head to toe,I have to give them an A+.The beauty of the town,history,harbor,Patriots Point,homes,Battery park,bus tours,horse buggeys,OMG not to mention the seafood resturents,every time I can with each appointment I will go down there for 3 or 4 days and tour the area.They have homes that go back to like the 1670s,they is no way to describe what I saw,course Im a history buff!
Every day in Charleston I thought of you,tonight want you to know my prayers are with you and I know everyone here needs you,you are such a blessing to this site.
Big Hugs Ken

Hello Ann,
Unfortunately I am not sleeping well at night or day. The pain level has been high. I know I need to get up and move and so I do light house chores or like yesterday, I went with my hubby and lil one to her horseback lesson and sat there to watch. But when I do things I get exhausted easily and just want to lay down again. I get weak and start to slouch over. So I am pacing myself. I am working with my doc on trying to get the spastic muscle and cramps down to a more exceptable level. I do not know what has changed this week to make me out of the control I had with coping with the pain. I know that with Gods help I will endoure though. Thank you for your prayers. I have been praying for you too during my nights of no sleep. Love, Joyce

Still stuck home alone Ann!

It's a sobering experience. I wan't to break free of it all and catch a bus! But then I also recognise that there is more of this ahead of me, much more I should think! And so I am recieving it 'as from the Lord', the only way to deal with any season in life. At least that's how I am trying to deal with it. The news is that the parts may arrive late today and the repairs could be made by Tuesday next week, just in time for a train trip to visit the respiratory specialist.

Trust that there is peace in your world Ann,
sending you a PM on another topic..

Thanks for posting...i dont even know if I can post this as the inertnet where I live is about to be turned off...so...dyna vox went well, the only problem is can I remember it all when I need it. But I have a handbook now, and will try it out. First I have to get an external microphone for my pc as the one that comes with is so soft you cant even hear it. More later...

My Dear Sweet Ann, I am glad to see you up and around a little more today. I know how you feel about the neck thing-I have had my neck on my shoulder for over a year now and actually going tomorrow to see if Botox will do anything. Puts a slant look on society from my point of view. I also go Monday for the swallow study test (don't know which one it is but will ask at drs office tomorrow). I just wish I didn't have to drive 50 miles away to the drs office especially with the price of gas. I have never had acid reflux but my youngest with COPD and laryngomalacia has battled it for almost 11 yrs. She drinks constantly and yes the meds are not good for long term use. That will be one of her last surgeries; where they twist the opening to the stomach and stitch it part way. Oh I have received PM's now what's next? You're in my thoughts and prayers, Love, Kimberly

My Dear Sweet Ann,
I am so sorry that you are having posture problems. Does it help to have your chair reclined? I will be praying extra hard for you.
You're in my thoughts and prayers,
Love, Kimberly

Hi Ann! Thanks for the hug! Imagine a big warm virtual hug right back to you! lol! I hope you are doing wonderful! XXXX

Good morning Annie;

Our trees are blooming so it must be the brief bit of Indian Summer temperatures and sunshine. So nice to feel its a great day out.

My boys and I will go up to see what progress has been made on the house this weekend. It is so nice to spend time with them. They are 25 and 28, so their personalities are starting to settle and we are able to get to know each other.

I am keeping notes and trying to incorporate the good forum information in the design of the house. Thanks again for all you do.

- Jerry

Thank you, Anne. I just hope he will really start making some decisions. He is deteriorating so rapidly, and as of today, he has not made any decisions, signed any documents, or made any plans. It makes a difficult time that much more difficult.

Ann,

So sorry to learn of your back problems today. Hope tomorrow finds you stronger. This darn demon - wish it suddenly disappeared for all of us.

I saw the pulmonoligist yesterday and he is arranging for a cough assist machine and training on it's use. One more apparatus to help me stay mobile, I suppose. Not so mobile today - took a header fall with the walker this morning then spent the rest of the day in bed sleeping. Makes me mad!! Perhaps that is what you need more of - not falls, REST,I mean. A full day sleeping and healing. Love and prayers. Diane