Thank you Laurel for sending me to the ALS Forum.

Luckily, for most people with CIDP, the normal protocols for treatment, (i.e. IVIG, and Plasmaphereses, and steroids), work and helps to put the CIDP into remission.
Unfortunately, for 5% of people with CIDP, the normal protocols of treatment don’t work. Unfortunately, I am in that 5%.
Since there are so few of us that are faced with a poor prognosis, I cannot get answers sometimes to my questions. I have been told by two of my doctors, that I will eventually end up on a ventilator, since the CIDP hit my phrenic nerve, and my breathing is becoming shallower.
I am being asked to fill out my Advance Directive now, and I needed guidance with some of the questions. Especially the part where the question of living on a ventilator comes in.
I have talked to two of my doctors about it–I like these doctors of mine, and we can have very frank conversations. But, it seems the doctors are pessimistic about living on a ventilator. When I put that question to this forum, I really didn’t get the answers I needed.
Laurel suggested that I go over to the ALS forum. And I am so glad I did. I was able to get both views there. Since most people with ALS end up needing to go onto a vent., I was able to speak with people actually on it, as well as see people who declined going onto one and eventually passed on, as told by their relatives.
My doctors were kind of hinting to me, to “throw in the towel”, and that living on a ventilator was not a good quality of life. However, I spoke directly to someone, (a person named Joel), who told me he still had a somewhat good quality of life, that his vent. is a portable one that is attached to his electric wheelchair. He gets around well with it, and is even able to go out wherever and whenever he wants to. He is still able to talk, as the vent. is via a trach., and still is able to eat whatever he wants to.
He also said his doctors were pessimistic about him living with a vent. He said he hunted around for about a year, before he found a doctor/resp.tech., that had a different view.
THESE were the answers I needed. Since I am being forced now to make some decisions, the answers from Joel helped me greatly in making my choice.
No, I do not want to “throw in the towel” now, and no, I do not want to be listed as “DNR”, (do not resucitate). Yes, I do want to go onto a vent., if that’s what the situation calls for.
I care more about the people I will be leaving, than for the extension of life for myself, pertaining to living with a ventilator. I know my life partner will have great difficulty running the business we have, (we set up tours for bands in the USA, Europe, and Africa, mostly for Jazz and World Musice artists). I have always taken care of the computers and anything having to do with them, including even simple email, of which my life partner cannot even do that–he still works with faxes.
It took him a long while to get used to the fact that I am dieing–two of my doctors had long talks with him about it. But he keeps putting off learning from me, how to do or take care of the computer stuff.
So, the longer I am around the better. And, I think when it comes time for me to finally go onto a vent., he will know it will HAVE to be the time to learn from me about the computers.
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So, Dawn, it is just that I went to where help for me could be given. I remember in the beginning when I was first diagnosed, reading somewhere,
“MS affects the Central Nervous System, CIDP affects the Peripheral Nervous System, and ALS affects both”, which is why they are called sister diseases,
(as I call them the three ugly sisters). I have two close friends with MS, and sometimes we compare notes. But I am very thankful to Laurel, as for people with advanced CIDP, over at the ALS forum is where we can get some answers, since advanced CIDP is similar to what the people with ALS is going through as well.
KEDASO
(Ken)

Hi Stacey,
I think the year was 2000, when my primary care physician noticed I had Horner’s Syndrome, (which is an eye problem), which I probably had since 1999 since prior to that it was not noticed by doctors nor in photos. That is what started the long road to where I am today. He had sent me to a neuro. for investigation as to why I had the Horner’s. Then other symptoms would start to show up. And after many tests, and two years of what I did NOT have, (as the neuro. would cross things off the list, of which at first they thought I had MS), we got to the dx of CIDP with Lewis-Sumner variant, though later just full CIDP since it later affected both sides.
KEDASO
(Ken)