sad news

    • May 17, 2010 at 10:46 pm

      Thanks a bunch for those who have called or pm’d! So many things have happened in the last 15 days, none of them good and most life changing. It started with my mom calling me, I thought it was another heart attack and called 911, er doc informed us cardiac enzymes were good, but you have cancer in your lungs, breast, entire left side of liver and part of right. Turns out it is pancreatic cancer as the primary with 2-3 months to live. My dad has Alzheimers, this crisis put him into his own crisis, I tried to have him stay with me, but it was impossible, my brother could not help, work etc. So four days after my mom, I had to admit him. He is still there with med adjustment and will have to go to nursing home. Simultaneously, I had windows installed and doors. This nightmare has been ongoing since August. Will probably end up in remediation. Now to Kev, besides his relapse and treatments during this nightmare, his toes started acting up again. He had an abcess along w/ an ingrown toe nail. This was the first time he was ever in so much pain!! He even took some codeine left over from his port surgery.

      I am lost, sad, confused, tired, dazed and numb. I don’t want to hear God only gives us what we can handle! I can’t handle any more! I bet I am going to get MS from all of this stress!! The story goes deeper and the stress goes deeper, I hope I can come out on the other end!

      My grandmother died of pancreatic too, wonder if I have this to look forward to? Why not? Why should I get a stroke of good luck.

      On a good note, when I move in with my mom towards the end, (we only live 3 miles away, so currently I spend the morn and early afternoon there, go pu kids and come back for dinner till she goes to bed) I won’t have to worry about picking up the kids or anything, since it will be summer vacation. At least God thought of that!!

      BTW, no prozac or xanax yet, I hope I can hold out, managing all of these medical conditions and 2 households requires too much concentration!!

      Does anyone have any suggestions? I have called hospice, legal matters in order.

    • Anonymous
      May 18, 2010 at 12:09 am

      I just finished going thru dementia with my mother, I work full time and am my daughter’s full time caregiver. My mother was in a beautiful board and care, but I still did a lot of physical type work. I gave up trying to make her ‘better’ and several years ago decided that it was more about the caring than the curing. Just go when you can. My brothers were no help, they did not even call. So if your brother can at least go to see your dad once in a while it will help you feel better. NEVER feel bad that your dad is in a nursing home. I am so sorry that your mom will suffer in the end, but honestly it will better for her. No you don’t necessarily have to get pancreatic cancer. You have genes from your other parent. Although Alzheimer’s does not sound like a better alternative, a lot of Alzheimer’s patients are quite happy and don’t know any different and are not in pain until maybe the very end. When your mom refuses water and food the end will be near, anywhere from a couple days to about 2 weeks. I watched many go while my mother was at the board and care, I was able to be at her side (this with my daughter with off the chart CIDP) when she passed on and it was a good thing for ME.

      Nothing will make you feel any better right now, just know that you are the only one you can depend on, be grateful for whatever little help you can get. Don’t look too far ahead, know that your priorities will change every hour and try to get some sleep. Everyone told me I would be rewarded in heaven, but NOT what I wanted to hear! Hospice was a big disappointment, in CA anyhow, they come out about once a week and take BP, temp and pulse. Big deal. I can do and did that. They weren’t even too helpful with the care kit at the end I had to practically beg for that!

      You won’t have much time for the computer. I’ve only recently had some time for the computer. My daughter is still very ill and broke her left ankle falling out of the wheel chair last Thursday and is barely getting any treatment, professionally, for that.

      The Durable Power of Attorney for Health Care and end of life decisions is a huge gray area. Once you’ve decided on hospice, I think this applies in all states, keep your mom out of the emergency room or 911 cause they will have to revive her, unless she is gone, it is just a huge gray area for the emergency people. Sounds to me like reviving her would be punishing her, but that’s for the two of you to decide. My personal opinion is that she is fortunate she was not diagnosed sooner, the cure would have killed her first!

      Remember, if someone offers to help, take it no matter how little it is. I had a friend take a car for an oil change and she could not understand what a big deal that was for me, she didn’t feel like she had done anything and I felt like someone had moved a mountain for me. I have another friend who goes with my daughter and I for PE when she can. She does not think she’s doing much, but getting my daughter in and out of the car and walking for sometimes 20 minutes pushing her in the wheelchair is what I have to do when she’s not with me (my friend).

      What I’m saying is, let people know that those little things, the grocery store, the pharmacy, doing laundry, help more than they can know, unless they’ve been down the road.

    • Anonymous
      May 18, 2010 at 12:10 am

      My heart goes out to you, Dawn, with so many serious medical (and life)issues in those you love. It must be so hard for all of you to cope with the diagnosis and extent of disease that your mother has just been told she has and also the cascade of events that this has lead to on top of all the others. You are strong and especially strong for those that you love, so all the advice I can say right now is to hold on and live each moment as well as you can with both your parents and with your kids, keep love in your heart at all times, and do not forget to take care of (and give love to) yourself as well as all the others that so need it. There are things in life that cannot be changed from needing to be faced and over this we do not have much control in life, but we do have control over how we face them–so gather courage and lead forth into this battle with love. I am so sorry that Kevie has relapsed, but am glad that he was being carefully monitored and that there is a treatment that does work well for him and should help him soon to be stronger and better again even if it is hard to live with being ill or having to have so many treatments. For you, cry when you need to, but mainly live each day with love in your heart–love is way more powerful than any illness, than any challenge that life throws at you.

    • May 18, 2010 at 5:43 am

      I am so terribly sorry to hear of the suffering in your family, Dawn. You are going above and beyond the call of duty. I want you to know you are in my prayers and that I admire your strength and unboundless caring. I hope you remember to take good care of yourself and that our prayers will at least bring a little comfort for you and your family.

    • Anonymous
      May 18, 2010 at 8:19 am

      Dawn and family… you will be in my prayers. My mother was in hospice and in WI it was wonderful. I was my mothers primary hospice caretaker. I traveled from MN to WI everyday, pluse get my daughter to work. So I understand two households. My father had passed away several years before.

      If you are able .. write down all the family memories. Smile at the photos..

      and when you need to go outside and SCREEM. Really does wonders.

      Like KatyK remarked … take care of yourself.

    • Anonymous
      May 18, 2010 at 9:13 am

      Keep it simple. Breathe. Eat. Sleep. Feel. Love, and be loved.
      Know we are here.
      All my love.

    • Anonymous
      May 18, 2010 at 10:51 am


      My father in law was diagnosed with Stage 4 pancreatic cancer last July and is still going. In fact, he is on a golf trip with his sons right now. He has been responding well to the chemo. When he was diagnosed, we thought he only had a few months. Just to show you that there is hope and miracles can happen. He is very strong and has a very positive attitude. We just try to spend as much time with him as we can.

      I know that people say that life and a higher power only give you so much you can handle, but it is tough to bear this cross. Believe me, I ask the same question all the time. I have been given a lot to handle as well. Some days, I feel like I can do it and do it well. Other days, I crumble and then pick up the pieces the next day. All you can do it put one foot in front of the other and concentrate on one day at a time. I hope you have a good support network and a lot of shoulders to cry on. We are all here for you as well.

    • Anonymous
      May 18, 2010 at 11:45 am

      Dear Dawn,
      I am so sorry to read about the things you are going through. The only advice I can offer is to call on friends to help you. We lost my husband’s father to pancreatic cancer two years ago–the only good thing in the journey was that it was blessedly quick. At the same time a young friend died of the same thing, and her partner enlisted friends and neighbors to assist her. People really rallied to help with the everyday things such as cleaning the house and bringing over food, mowing the lawn etc. Don’t hesitate to put the mundane chores on the back burner. And hopefully you have someone that you can vent and have a good cry with. Of course you can come here and vent like crazy and that might help a little.
      Lots of love and good wishes,

    • May 18, 2010 at 11:50 am

      I am so sorry all of this is happening. I will pray for you and your family. *hugs*

    • Anonymous
      May 18, 2010 at 12:44 pm

      My heart goes out to you. I couldn’t imagine going through what you are dealing with. Just know that we are all here for you and will continue to be. Prayers to you and your family.

    • Anonymous
      May 18, 2010 at 6:22 pm

      Dawn –
      I know how important this forum is for you – You post often, and offer so many words of wisdom and kindness. I am pleased so many have responded. When I found the forum this spring it was wonderful, and it is because of people like you. You will recieve lots of advice in the months to come. Our family did as we said goodbye to my Daddy a few years ago and my Mother in Law last year. I think the best advice I got was – do what feels right for you and your family. No one else is in your shoes, and you don’t have to explain your decisions to anyone. So, listen to yourself – and take care of yourself! Know you are loved and appreciated by many.

    • May 18, 2010 at 7:45 pm

      Thanks guys. Jessica, the onc., primary and gastro were pretty clear that chemo might only buy us a month or two and would decrease the quality of life we currently have. How many places had it matastysized to? The liver is totally covered in masses on the left side and right has 5 masses w/5cm sized masses. They say 1-2 is treatable, but after 3 the prognosis is not very good. The lungs also have many lessions and something on the breast. She is very tired, but appetitie is good. There are so many doubtful thoughts, regarding no chemo, is it the right decision? My grandma suffered so only to gain2 miserable months. My dad has some moments of thoughtful rational conversation and it makes me doubt my decision. Of course it is followed by a rant or confusion, but it doesn’t make it easier! Oh well.

    • Anonymous
      May 19, 2010 at 11:55 am

      Dawn, it is a tough decision. My father in law’s was only in the pancreas, no other organs, so he did mild chemo for a while. Now it is in the abdomen so he has upped the chemo. We will see. He has had a good quality of life so far with the chemo, but he is pretty amazing and strong, so I don’t think we can compare him to most people. He continues to golf, work out, travel some. That may change once this chemo starts taking a toll. I guess you have to weigh it by if it is worth it and will make the quality of life a lot worse. Best wishes to you and your family. Cancer is really hard and I have lost other family members to it. I am dreading when things get worse because I have seen it before….I am very sad for my kids too that they won’t remember their grandpa much. Hugs for you Dawn….

    • Anonymous
      May 19, 2010 at 2:10 pm

      Oh my sweet friend.

      I know too well alllll that you are dealing with. From the cancer to the alzheimers, to Kevin…to not understanding why and how God can give you so much at once.

      Alzheimers is a cruel and vicious disease…no doubt. And so is cancer.
      And, I am sorry they both have found their way into your life.

      It will only get harder…I wont try to tell you it’s gonna get better or easier..b/c the truth is, it’s gonna get a hell of a lot harder. And, that is why you will need those you love…two most important things you will need to do is surround yourself with the ones you love most and have no regrets.

      Call me anytime. Try to get some sleep…and hang on. I’m so very sorry.

      big hugs and prayers,

    • Anonymous
      May 19, 2010 at 5:44 pm


      My heart goes out to you… I would keep the xanax close by. You might find it to help just to take the edge off. With taking care of so many, please, please take care of yourself. Both my parents are gone now and when they were dying just totally sucked. Hard stuff to deal with. Keep God in your prayers… you and your family are in my prayers.

    • May 19, 2010 at 8:54 pm

      Dawn, please update us when you can. We care and I’m praying for you.


    • Anonymous
      May 20, 2010 at 7:26 am

      I have you and your love ones in my prayers and thoughts.I pray for strength for you and PLEASE ask for help. We love you and you have given so much to so many,
      Unconditional love Lakoda[/SIZE]

    • Anonymous
      May 20, 2010 at 9:40 am


      Please see the love and support you’ve received from your “forum family”. We are here and praying for you. Plus, we’re only a phone call away if you need to talk, vent, etc., etc. It may feel like you’re carrying this burden alone, but know that you are not.

      Take care my friend. ~hugs

    • Anonymous
      May 20, 2010 at 11:00 am


      Sorry that you and yours have been thru so many burdens. I (we) hope you can find comfort in people and things you love! Let us know if there are ways you want us to help.

      Take care,


    • Anonymous
      May 21, 2010 at 3:42 pm

      So sorry to hear about all the burdens you bear. Know that we “your GBS/CIDP family” are all here for you & praying for you & your family. Don’t feel bad about putting your father in NH, you care about him, that’s why you allow others to care for him. When my Dad died we had to put Mom in the NH, she has ahlzimers. My Grandmother had it too and had to go to the NH. When people don’t eat, they are not hungry, not in pain from hunger. That saying “God will not put more on you than you can handle” that’s not in the Bible. It says “Never will I leave you, nor will I forsake you”. I think you are Superwoman, you are carrying the whole world on your shoulders. Go ahead and take the prozac, it will make it easier. That’s what it’s for. My heart and prayers go out to you, and your family.
      Love & hugs, smitty

    • Anonymous
      May 21, 2010 at 3:52 pm

      You bear a lot of burdens too! I do hope you can get an electric wheelchair for her. My heart and prayers go out to you too! Love, & gentle hugs, smitty

    • Anonymous
      May 21, 2010 at 9:49 pm

      While not advocating a lot of it, keep the xanax handy? Only one or two? For those nites when you MUST get some sleep to catch up on it all.
      What you are going thru, and things you mite have to decide are never, ever easy. Yet we all have to make some decisions in the long run. This isn’t a ‘what-IF or IF-only’ type of choice. Like with dealing with the CIDP? Base it on as much fact and practical prognosis as possible. I hope and pray that you make the best choices given the opportunities. Now with your father? DO treat his issues as separate! They have to be separate and that only you are the one to decide? Yes, it’s a burden? But you can also choose it to be the best one… Search your soul for your choices, trust your instincts in those choices and don’t regret them.
      I’ve been in similar circumstances, and they are never fun! Often they can be bizarre to surreal at times. Just keep faith in yourself, and also? Take a few minutes FOR yourself to allow you to regroup and gain needed strengths to do what you have to trudge thru. Thus, maybe xanax isn’t a BAD thing now and then? I will keep you in my heart and on my mind until you get out of this all….. You will do it because you have to! Hugs to boot!

    • Anonymous
      May 22, 2010 at 10:31 am

      I am so sorry you are going through this difficult time with your parents.
      I managed two households for six months during my moms illness and death. She had custody of my sisters two children ages 7 & 9 and I had a 3 year old.
      It was the most difficult thing I have ever had to do and it finally got me.
      Instead of washing dishes I started saying I can’t do this, I can’t do this over and over and as I was saying this I would pick up dishes out of the sink and sling them back into the sink breaking them as I did this. My brother who was there at the time came into the kitchen calmed me down and cleaned the mess. After that incident my brother and his wife came almost every day to help me and would stay at times to give me breaks. It’s been 30 years since moms death and my brother and I are still close.
      I learned the hard way to ask for help when it came time to take care of my husbands mother.
      This is not something I am proud of and had no control of at the time. I’m only telling you this to let you know when your overloaded with stress it can release itself in unexpected ways if not controlled before hand.
      Get any help you can, follow suggestions of others on taking something.
      My heart goes out to you.
      I will be saying prayers for you and your family.

    • Anonymous
      May 22, 2010 at 12:56 pm

      Dawn, one thing I am learning is that in the midst of life there is death, and in the midst of death there is life. This is a terrible and hard thing for you; take courage, my friend and may God guide you through!

    • Anonymous
      May 22, 2010 at 6:01 pm

      [FONT=”Microsoft Sans Serif”]hang in there dawn–
      very sorry for all you are dealing with.

    • Anonymous
      May 25, 2010 at 12:51 am

      You will get through this, although it might seem insurmountable right now. My 89 year old mother-in-law has dementia, we have been her primary caregivers since 2003 when her second husband died. She should have been put into Assisted Living back then, but somehow my husband managed to keep her in the fancy senior apt. building that she had requested. He is an only child & refused to accept until recently how bad off she really is/was.

      After she was kicked out of the AS facility, we moved her into a nursing home in Jan of 2009. Five days later she was kicked out again for beligerant behavior. They took her back after she spent 18 days in a geriatric psych ward. She has been very content there ever since. My point is, that she is getting much better care there than she was in the apt. or even had she lived with us. Don’t feel guilty about your father, they do so many activities to stimulate them & the care is wonderful in most nursing homes.

      I can’t help you with your mother, I am so very sorry. You made me appreciate the fact that my 85 year old mother (who is still in her home a few blocks away), is doing so well at her age. She is my best friend & I should be doing more for her, but the energy just isn’t there. I will treasure her while I can & I thank you for the reminder of how special our parents really are. I will pray for your mother, & you take care of you…

sad news

    • Anonymous
      June 7, 2008 at 11:08 am

      Greetings, all.

      I don’t have any of the particulars, but I’ve received word that our friend David Bodley-Scott — DrDavid — has died.

      I’ll give more information as I receive it, but I’ve let his family know how keenly we share their loss.


    • Anonymous
      June 7, 2008 at 12:19 pm

      Thanks for the update. Please let us know if there is a way to send condolences to the family. DrDave was a great help and he will be missed.

      Jim C

    • June 7, 2008 at 12:48 pm

      Thank you for letting us know. And please send our condolences and prayers.

    • Anonymous
      June 7, 2008 at 5:03 pm

      Thank You for the update Deb. Please send Dr David’s wife, daughter and grandbaby My Deepest Sympathy. He was such an Awesome Man, Very Intelligent and Caring. Dr. David will be missed. God Bless You Dr. David.

    • Anonymous
      June 7, 2008 at 8:55 pm

      Thank you so much for letting us know about DocDavid. I must have sensed something because he was in my thoughts today. I remember how ill he has been with renal failure plus this syndrome we all battle. Our new people never had a chance to get to know him because he’s been fading from our forum.

      DocDavid will meet another awesome person in heaven, Gene.

    • Anonymous
      June 7, 2008 at 10:30 pm

      Thank You for telling us. I/we will miss him very much. I am sure Gene is greeting him at the Pearly Gates.


    • Anonymous
      June 7, 2008 at 10:52 pm


    • Anonymous
      June 8, 2008 at 12:16 am

      I am very saddened by the news. I translated an article he wrote about his Rituxan treatment into German including the picture Sue posted. It was published in the German GBS/CIDP magazine. His success with Rituxan encouraged me to get the same treatment.

    • Anonymous
      June 8, 2008 at 12:37 am

      What a sad, sad day. DocDavid was such a wonderful man. I am sorry that our new family members never had the privilege and honour of hearing his wisdom both medically and “life wise”. He was our CyberDoc and how we loved him!

      Thank you, Deb, for letting us know. Please convey my condolences to his family members. My prayer thoughts are with us all in our grief.

    • Anonymous
      June 8, 2008 at 3:40 am


      DocDavid was truly a “saint”. Almost unbelievable! What a great contribution he was to this foundation and to humanity. He will surely be greeted by the “maker” with ……………….”Well done, Doc”…..


    • Anonymous
      June 8, 2008 at 9:24 am

      DocDavid was such a kind, caring member of this forum and always incredibly knowledgable and helpful. His doctor’s perspective and kind heart will be sorely missed. My deepest condolences to his family.


    • Anonymous
      June 8, 2008 at 10:03 am

      [B]I am quite saddened by Doc’s passing. He was a great man who helped so many. I will always remember his quick witted humor when he, Marge and myself would talk in e-mails or in our old chat room. He always made me laugh when he would talk about my “purple rose tattoo,” because I had told him it was on my “left calf”, he would say I “branded” my “calf” and did it “moo” when I “branded” it. So when I would end my mail to him I always said,” My “calf is still mooing” David.” Not many knew his humor, but it was great. I will sadly miss him and all he had done for these forums. Doc was a Buddist and told me he was trying to find his reason and purpose on this earth, so he could find his true enlightenment. I don’t think he realized he had found it all the day he joined these forums and helped so many.[/B]

    • Anonymous
      June 8, 2008 at 12:28 pm

      I read the post this morning on the English forum ….I haven’t been for a while and today I said you have to visit more often both forums .
      It sadden me reading the bad news … Dr David was the first one I talk to online about CIDP and gave me a lot of information and support .

      I just visited a few minutes ago the english forum and his son has confirmed his death on the 6th of this month .

      R.I.P Dr David …my sympathies to the family and friends .

    • Anonymous
      June 8, 2008 at 3:29 pm

      Greetings, all.

      This from David’s son, Richard, on the UK forum:


      It is with sadness that I confirm that David passed away on 6th June. He had been batttling his many ailments for a long time and in the end he slipped away peacefully near his home in Lymington. He enjoyed and was grateful for the new friendships during his communications with you on this forum, thank you for your kindness and support.

      Richard (son)

    • Anonymous
      June 8, 2008 at 9:25 pm

      I’m really saddened by the recent deaths of both DocDavid and Gene. The GBS forums has lost two incredible, brilliant gentlemen. They will be truly missed.



    • Anonymous
      June 9, 2008 at 2:56 am

      Doc Daive gave a wealth of information, enlightening us and
      helping us to understand things.

      He was a gift to us all.

      May he rest in peace……………

      May the angels take you into paradise…..

      with unending thanks…………….


    • Anonymous
      June 9, 2008 at 10:23 am

      I too am sad to hear about the passing of DocDavid. He always had a level head and a wonderful sense of humour. I am thankful however that his suffering has ended. Rest In Peace Doc. thank you for your support and advice, you will be remembered fondly always.

    • Anonymous
      June 9, 2008 at 10:57 pm

      I am so saddened by the passing of another one of our most intelligent & informative members. He was such a caring & ihelpful doctor, we were so very lucky to have had him as long as we did. He helped me out so much back in 2003 when I was at my worst. He sent me many personal emails of his daily struggles, as we both had such severe cases of CIDP. I will never delete any of his emails as his wit was as good as his information. May he rest in peace & fly high above us always as our guardian angel…

    • Anonymous
      June 13, 2008 at 10:13 am

      …..I am so sorry to hear of DocDavid’s passing. My sympathies to his family.

      Hugs, Myrt