Hi Ken

October 27, 2009 at 3:47 am

Thanks for that Ken, Am saddened to read things are still heading in that direction for you. You may not remember me, but you kindly passed on your thoughts and experiences to me when i became another CIDPer nearly 2.5 years ago. I wish i was at least able to offer you advise or suggestions but just wanted to let you know how much i appreciated your itme in answering my questions etc. Unfortunately despite being one of the lucky ones as i was diagnoised within 2mths of symptoms and commenced on the latest pulse methlypred treatments (supported by immunosups and twice weekly / weekly ivig as well for the last 2 years) I am currently back on 1000mg iv methylpred plus all the fore mentioned due to us trialling a very gradual methylpred taper (managed to be steriod free for 8wks before i did a very rapid and scarey decline).
I admire how you mange to keep things in perspective as your body gets taken over by this harrowing condition. It is undescribable to have something and then to loose it and live without it, you are an inspiration.
Recently (3 weeks before i was again needing elbow crutches to walk and nearly unable to care for myself) I stubbornly completed my first ever half marathon – it is folks like you that got me there – as i knew i was already on my slippery slop downwards, but wasnt ready to admit it, or be robbed of my 12mths preparation to do the 21km run!! It was a hilly course on windy wet country roads, and as i tried to tell my legs to behave, every corner i came to I prepared which side to fall – should the legs not obey me!! I knew i had to run while i could – as well as for all those with this condition, that would love too if they could!! 2.17hr i made it!
Your current answer to fatigue issues will also be posted in my files, heres hoping it will never come to that but one can never be too prepared or know which way things will go with CIDP. Cyclophosphamide is also being thrown around again for me re treatment options.
All the best Ken, and heres to your current quality of life continuing with only one or two days in bed a week.
Sending you lots of strength and best wishes from my end of the world
Kiwi Chick

Hi Ken

April 9, 2009 at 6:34 pm

I haven’t been here for very long time and did not understand by the first look why you should go on the ventilator. My husband suffers of this condition ( POEMS syndrome)since 4 years nearly and for the first 2 years we thought he had CIDP, a very unusual case, but there was no proof of other illness at that time. 2 years ago he came down with a very bad pneumonia which nearly killed him and put him on a ventilator for long long time. He spent 10 months in ITU from which for 4 months he was fully ventilated and the rest of the time to today on a bipap machine which gives either CPAP or BIPAP. The reasons of being on a ventilator are different from one another but I think the fact of having a tracheostomy and pressure support inflating your lungs is the same. the only good point of having it is that those machines keep you alive and it is the most important thing. The downsides are so many but you shouldn’t think too much to those……if you get to have big pressure support then you will have a cuffed tube which means no talking…..you can still have pussy muir valve in the ventilator’s circuit to help you talk , more prone to infections, very invasive and affects your eating and appetite after a while, not using your taste buds…..they are going to sleep. And then you get stranded at home, depends on the battery life of the machine how far it can take you.He is now stronger and he is off the vent 24/7 since a couple of months. When he left ITU for home 15 months ago he’s been told that he will never be able to breath on his own and he’ll be attached to that machine for the rest of his life( he is only 40yrs of age) but he managed to prove them wrong even after so long being on that machine and 50 pounds less in weight…..I am so proud of him. He’s come such a long way…..and now I have no doubts that anything it is possible, do not despair, believe and tell yourself every day that you can do it and you will get better no matter what. If there is anything you think I can help please do not hesitate to buzz me on my email. Wish you well and God bless us all. i TAKE THIS OPPORTUNITY TO WISH YOU ALL Happy Easter

hi ken

March 19, 2009 at 6:49 pm

yes, the $$ thing is uncivilized to say the least. my blog: [url]http://www.alicedicroce.com/id14.html[/url]
is a nearly daily update on everything to do with this process.

ya know, it seems every neuro has a different idea of what’s good and what’s not– i have seen their statistics and have spoken to folks that have gone through it. i’m convinced! but anyway– i’ll be happy to be a rat ๐Ÿ˜‰

hey, with a less than 1% mortality rate, what have i to loose. as it stands, i can’t walk and my pain is unbearable– i’d try an indian sweet grass transplant at this point…:eek:

be in touch,

allaug, did you get my message?

Hi Ken

January 19, 2009 at 1:28 am

Hi Ken! I have disabilities that keep me from traveling and alot of times I just don’t feel up to traveling. You have certainly given me gift that I cherish! When I saw the photo of Alaska! I felt as if I were sitting in a chair right in that photo and was taking a vacation in a beautiful area with my feet propped up and enjoying the sunset! Awesome Ken! Totally awesome! Please keep them coming. For I really enjoy being in another world!
Linda H

Hi Ken

August 29, 2008 at 1:22 am

Hi Ken! I know the feeling. I used to love gardening. But now have a container garden. That digging in the dirt was killing me! ๐Ÿ˜€ We got a riding lawn mower and have two acres to cut and that just about kills me doing too! Don’t dare sit on the ground! Will take forever to get back up! ๐Ÿ˜€ I do have a cheapy swimming pool though and enjoy getting in the pool.
If I am better next summer, me and my husband are going to the beach and the mountains for a vacation. Have not been anywhere in 2 years and 4 months. And I hope to see that day! If that day comes I will have the camera out and will be shooting away! ๐Ÿ˜€

Hi Ken

August 22, 2008 at 5:02 am

Read your other posting about the camera and was thinking about the one you use. So I will check into that an see if I can afford it for Christmas. Love the sunset! Woke up again not sleeping and when I saw this, the first thing I thought of was me sitting on the beach looking into the sunset! Beautiful! Beautiful! Stunning

Hi Ken!

August 21, 2008 at 7:25 am

Hi Ken! I just printed our your new lesson to me! And am going to try today taking some shots and see how I do! Thanks for sharing your knowledge to me and the others in here. Just curious though! What kind of camera do you use. The photo’s look so professional and some of these digital cameras are okay but not great. I want to get myself a better digital camera for Christmas. Any suggestions? Thanks! You are so wonderful to have in here! It certainly makes my day. I came in this morning and had to rush and see what was posted in the picture section. ๐Ÿ˜€