rose

hope you are having a nice trip!

Oh, Rose..just reading your reply puts me to ease. Thank you. I hate it for him. Most men are like this, but he is one that never gets sick and even when he would get a virus or something, he would not take any meds to help, just push through. So to hear him complain, I know he is truly in discomfort, it heart breaking to say the least. I do hope this ride will make a sharp turn and effects of prednisone will show improvement.
Yes!! It is a great sign that it is taking longer to be diagnosed. And I thank you for that reminder. I feel selfish when I hope that something improves, as there are many that would like to be in Jeff's shoes. Have a marvelous day and know you touch people's life with your words, its a gift!!

Just popping in to say hi to everyone. We are getting ready to go on a short trip.

Rose, I know you are busy and the last thing you need is me..but here I am again ;-) This prednisone is awful!! He is getting worse and worse. Now it has started making him cramp in his hands and left foot, his legs are weak and his left went out from under him he said today, his heart got out of rhythm (not like anxiety) yesterday. I called the neuro, he was rude and told Jeff to stay on it until the appt. We asked if he could take potassium pills to help with cramps, were told no because his blood work a week ago was normal. Just at a loss on how to help, but typing this out it all seems to have calmed me. So thank you

Rose, I did not feel the reflexes would say a lot, the doctor did not show much concern for it, therefore I am not going to be concerned. I just thought a reflex was a reflex, did not realize they would be different at different times. LOL..He goes to the neuro on the 29th, so maybe he can adjust the prednisone, it may be too high of a dose. I will have to ask Jeff to look into the prosthetic devise. How Awesome is that!! How are you doing?

Good morning, Rose. I pray this finds you well today. Do you know much on the indication of fluctuating reflexes as a sign of anything. I have searched and can not come up with anything. I ask because two weeks ago his knee reflex was 1 in right and a 0 in left, yesterday still a 1 in right but 3 in left. What the world?? I have always had consistent reflexes and I suppose some can have wild ones. It may not be a thing, just curious about this. Thanks!!

Happy Monday, Rose. Hope this finds you doing well. Yes, the stress makes sense on making him worse. But, according to him, he is not stressed about it all. i can't see how one would not be, but he keeps saying God has a plan and he is willing whatever way this turns out. I admire his faith. Thank you so much for being so caring. It seems you have a huge heart. Hope you have a wonderful day. We are going to his GP tomorrow and waiting on the neurologist to send us an appt. Wish us luck! You are beautiful woman and your picture reaps with love for others!!

Hello! I have been wondering how you are! I even tried texting you to a number I had saved. Please let me know how you are doing. Take care, Teresa

I got the message about too much wordage and had to shorten my post. Wanted to say thanks for checking in on me. I may want to pick your brain later about some peg stuff??? Will that be ok w/ you???
How are you feeling these days???

also, because of his diminished breathing the anesthesiologist did not prescribe narcotics. Instead he is taking ibuprofen. Just gave him some a little bit ok. He actually did sleep from 1:00 am to about 6:00 this morning. He is glad it is over.

Hi Rose~~~~
Many thanks for remembering. Things went well and he came home that night. He is a tired puppy
today, however. He has eaten soft food and I have flushed the peg. Since he can still swallow, we will not be using it right away.
The only glitch was that the hospital did not charge the Hoyer lift for the correct amount of time and so therefore we did not have the use of that equipment. After the procedure they brought another one (manual) but they had the wrong sling. soooo.. in frustration I had them get as many people as possible and we used the draw sheet method and switched him to his wheel chair. Thank goodness his power wheel chair can place him in a recline position so the move from bed to chair was as smooth as humanly possible. Gilda Radner was right: IT IS ALWAYS SOMETHING!!!!

With his main symptom being speech there is not much to know if it is keeping anything from failing. We know the speech is much worse, but it is just the 9th day. His shoulder pain may or may not be caused from anything connected to his voice. So just a waiting game. I know you feel his pain since you have been on prednisone before. I have, but not near this high of a dose.

I am not able to private message and I do not post a whole heap out in the forum. I learn from reading on here. Many smart lovely people in this community. Makes you wonder how sad it was for people before something like this came available. I am glad you are feeling better. I will keep checking on you!

Hi Rose, I signed on to check in with you and heard about Barry. I am sorry, I know how much you cared about him. I just looked at all his albums again, it seems so fast and unreal. Hope you are doing ok. My stress with work has 9 more days and then it is over. Will bore you then.
Thinking of you-

Rose, I so hate to bother, but you seem to have had the same problems with prednisone as Jeff, so I am hoping you can help a little. He is on his 8th day and each day is worse. I know the lack of sleep can not be helping. How long were you told it would start helping if this was an auto - immune disorder? He was told 3-5 days. But I have seen where some are told 4-6 weeks. I could not imagine 6 weeks of prednisone. Thank you so much!!

Rose, It has to be frightening to have the chest congestion and cough. Even if nothing dire has happened in the past, it seems there would be some what if's turning around in the brain. Keep that immune system as healthy as possible. This is a great teaching, a wonderfully inspiring and a very humbling community. I have only posted once, but the lessons learned (in all aspects of life) far exceed that one post. However this family of friends came about, I hope it is known the blessings it has brought into lives. I hope you shake that cough away soon. Keep me posted!

Thank you, Rose. Not only for your encouraging words, but for caring for others you do not know. I pray many blessings for you. He is only getting about 4 hrs a night of sleep. He has yet to get irritable, that is a blessing. He is more emotional right now, but even that comes is phases. Thank you for opening up to listening. I love your attitude and willingness to help others. How are you feeling? I know I may not be able to add value to what is going on with you, but I can try..