Five stages of Grief: Neurology Now

    • Anonymous
      August 24, 2007 at 7:41 pm

      [I][U]Exert taken from the Editors page[/U][/I]: Robin L. Brey M.D. Editor-in-Chief of [I]Neurology Now [/I]


      [B]A neurological diagnosis can lead to a tremendous loss both for the patient and the people who care about her-loss of physical or mental abilities, livelihood, or autonomy[/B]. It is not hard to imagine why people in this situation experience the same stages of grief we go through when someone close to us dies. The psychiatrist Elizabeth Kubler-Ross, M.D., identified five stages of grief:

      – Denial (this isnt happening)
      – Anger (why is this happening)
      – Bargaining (I’ll do anything to make this go away)
      – Depression (I’ll just give up)
      – Acceptance (I’ll do what I need to do to live with this the best way i can)

      It can be even harder when depression goes hand in hand with a neurological disorder. ….. we learn that the rate of depression is between three to five times higher in people with certain neurological contditions than in there general population – something that is NOT seen in people with other chronic illnesses like heart disease or cancer. It is so imporatnt to recognize and treat depression, if left untreated, a person could be blocked from getting the help he needs to have the best quality of life possible.

      The article that discusses depression relates specifically to MS, Parkinsons and epilepsy.

    • Anonymous
      August 24, 2007 at 9:55 pm

      Thanks for posting that Ali.:)

    • Anonymous
      August 24, 2007 at 10:09 pm

      Yes, thanks for posting this, Ali. I have often thought myself that the stages I went through were very similar than those of people who are dying or have lost a loved one, but I have never seen it in print before. I think the reason that it is different for people with cancer or heart disease, is that either you beat it & go on to live a similar life to what you once had, or one dies. There isn’t the obvious physical impairments (for many of us permanent), or the continued deterioration of physical abilities seen in illnesses such as a severe case of MS. I think the stages sum up exactly what I went through the first 3years of severe CIDP. I did refuse antidepressants, however, as I felt that it was situational depression that I was feeling & quite normal under the circumstances. Maybe back then I should have taken them, although now I am in the acceptance mode after 5 1/2 years…

    • Anonymous
      August 24, 2007 at 10:46 pm

      Grieving For The Loss Of The Person You Once Knew — While Learning To Be The Person You Have Become – by Catherine Morgan

      There comes a time in every fight, where you have to wonder what it is you are fighting for. In the case of chronic illness, I thought I was fighting to take my life back. I thought I was fighting to find a cure for myself. I thought I was fighting for the right combination of medications to help me lead a “normal” life again. I was fighting, fighting, fighting…..until that one day when I realized, I was fighting a losing battle. No matter how much I fought, I was never going to get my life back. No matter how much I fought, I was never going to be “normal” again. I actually even fought myself at this time, to not give-up the fight. I thought that if I admitted failure, I was letting the disease win. But the truth is, that as with most fights, the toll the fight takes on you emotionally is much worse than the fight itself.

      I finally realized that by giving-up my fight, what I was really doing was accepting my condition. And by acceptance of my condition, it meant that I was accepting my limitations, and that was very depressing to me. I admit that at this point I fell into a deep depression. My life as I knew it was over. There was no hope that I would ever be able to return to my nursing career, and my feelings of hopelessness about ever being able to support myself financially was all encompassing. I felt useless to myself, my family, and to the world…..I was a person without a purpose. How could I go on? And yes, why me? Why me? What did I do to deserve this? Why was life so unfair? I hate to admit it, but there were times like that, times that I just felt sorry for myself. I felt as if I had hit rock bottom, but then the earth woiuld opened up to swallow me even further down, each time I thought I couldn’t fall any further, I did. How could I even begin to climb out of my despair? Did I even want to try?

      In retrospect, I now can see this time as my grieving period, much like the grieving of the loss of a loved one, I needed to grieve the loss of myself. And as with all grief, you feel you will never get over the pain of your loss. But just as in grief, there comes a time when we have to allow ourselves to move on, to let go of the pain, and to hold on to the happier times. Let me assure you, this was not a brief amount of time, by any means. I would say that I still have one foot in this part of the process, even though I feel I am beginning to move on.

      I still have days of doubt and hopelessness, that sometimes suck me back into my feelings of grief. But, at least now I can say that I also have times when my awareness and acceptance has become a friend to me. Excepting my limitations allows me to feel empowered to turn my life in a different direction, a direction I may not have seen had it not been for my hitting rock bottom with nowhere else to turn. I am still very afraid that I will fail, I am just more afraid of failing to even try. The one thing I have is my hope, and as long as I never let go of that, I think I will be o.k.

      I do have a different kind of hope now than I did in the past. I don’t hope to have my illness go away, I just hope that I can learn to live the best life I possibly can along side of it. I hope for the courage to not allow my illness to push me back into depression, and that if it does, I hope to find the strength to pull myself back out. I hope for my continued understanding that what weakens me, might also be what empowers me. I hope for the ability to allow the lessons I have learned through my own struggles, be a catalyst in helping others who may be in similar situations as I have been. I hope that I will never allow myself to lose hope again.

      So, just in case my “lesson” was lost in this commentary……The lesson was “acceptance“. The sooner someone with a chronic illness can accept their condition, the sooner that person can begin to live the life they were meant to live. This doesn’t happen overnight, you will have to go through the grieving process in your own way, but the sooner you begin your journey to acceptance, the sooner you will get there. And, time does have an eerie way of helping to heal our wounds.————————————————————————-

    • Anonymous
      August 24, 2007 at 11:37 pm

      It is good to bring this to our attention. I have always felt that we do go through the grief stages just like a person who lost a loved one. Because after all, our world turned upside down, we lost the way our lives used to be and we must strive to find a new normal for ourselves.

      There have been times when I’ve looked at my wheelchair and it hits me that I can’t walk and I need that. And there are times when depression gets ahold of me.

    • Anonymous
      August 25, 2007 at 1:17 am

      Thanks so much for the beautiful post, or excerpt. Although I have CIDP, I declined very rapidly from a healthy, athletic 48 year old, to a quad in a power chair. It all began on March 27th of 2002, & by April 27th I had lost the ability to walk & also the use of my hands & arms. I would remain in this condition for almost 3 years. I often thought that it would have been easier to handle it if I had had more time to accept my disability, as in the case of most people with CIDP or other autoimmune illnesses such as MS.

      How often I would beg my grown children to remember me the way I had always been. I wanted to be remembered as the mother who had taught them to skate, downhill ski, play tennis, etc. After 5 years, I am sure that they do remember all of that, but see me now as I really am. By that I mean that I am still strong, I still run the family, even though I have physical limitations. They still come to me with their problems, or ask my opinions on their life’s decisions. I still have a role to play, it is just different now.

      But I still feel useful & needed, especially by my husband. He has now had two back surgeries that limit him physically as well. This is not quite the retirement we imagined as such young ages, but it is still good. We cannot downhill ski, but we can snowmobile. I cannot water-ski, but I can go tubing behind the boat. We will never be able to try golfing, but can still take vacations in the winter where we can swim. It is very similar to when our 3rd child was born disabled & we had to grieve for the healthy child we never got. It was different than raising our other two, but it was still good…

    • Anonymous
      August 25, 2007 at 3:44 am

      Ali ~ thank you, so much, for that excerpt. How often I have tried to explain this grief to others . . .

      Rollercoaster ~ thank you, so much, for the missive from Catherine Morgan. It pretty much says it all.

      I have family and friends I will share this with for it will help them to understand “just a little more”. Many thanks with hugs 🙂

    • Anonymous
      August 25, 2007 at 8:19 am

      I concur……………..great post from RollerCoaster!!!
      And, Ali, thanks for starting this post……….even though, now, I think am More depressed..:) But really, I am [B]fortunate [/B]to have recovered MUCH more than many on this forum, (and I truly pray and keep all of you in my thoughts as you struggle with GBS residuals). However, I too, cannot do the things that I once could…………….and it IS depressing!!!! And, now, I have this skin condition (shingles, eczema, and psoriasis), which Adds to the depression because of all the ugly spots on my body!!!:(
      But, there is a “devine” reason I suppose. So……….. life must go on…
      Man, what a depressing thread this is becoming! 🙂

      Love ya’ll,


      P.S. I will be coming up on my 3 year “helliversary” Sept. 4 😮

    • Anonymous
      August 25, 2007 at 11:27 am

      I’m very glad I found this Forum.

      I started my journey in Jan. 2003. That is when I went on a Biological Therapy for Hepatitis C. It consisted of IFN-ALPHA-2A & Ribavirin for 6 months. Those poisons is what left me with CIDP. Mine has progressed slowly over the past few years until I finally had to go on disability from work in September of 2006. Also have Myasthenia Gravis, Fibromyalgia and a few lesser things to contend with.

      I have been seeing a Therapist now for 6 months every week to go through the Grieving Process. It has helped me tremendously to stay focused on Positive Energy instead of Negitive Energy.

      Wishing ALL a Beautiful Day.

    • Anonymous
      September 1, 2007 at 9:36 pm

      Thank you Rollercoaster for all the beautiful posts! I am passing them on to family and friends. Ali, thanks also. I think I’m stuck between the depression part and the accept it part. Could somone give me a push on through?! It would be much appreciated, as this depression stuff is soooooo tiring!:(

    • Anonymous
      September 1, 2007 at 9:50 pm

      Marindee ~ if there was a happy face with his arms outstretched, I’d gladly give you a push thru!! I just heard this quote 2 days ago:

      “There is no short cut thru the fire walk” ~ unknown

      But never forget that your “family” is here to support you any way we can. Many hugs to you 🙂

    • Anonymous
      September 2, 2007 at 9:45 pm

      I am so glad I signed on tonite.
      Rollercoaster and Ali….the things said here are so true…as we all know.
      Thank you for puting it on here.

      I am not in a wheelchair , I didnt lose nearly as much as so many others…but, I did lose enough in my feet and legs that it’s noticeable. It has kept me from running and racing with my little boy…it has kept me from teaching my step daughter how to REALLY rollerskate. It limits my walking so that I cant walk no where near a fast pace…not even a moderate one. It’s crippling my toes and making them uglier by the day. A pedicure just doesnt do justice for bent toes anymore. I experience the awful pain from time to time and have not recovered from the left drop foot.

      I am approaching a one year anniversary of a diagnosis…and boy oh boy, I SO denied the diagnosis in the beginning…I SO went thru depression and still am in that stage even tho I am no longer having any treatment. Things were going ok for me…but, now, I do know I am having a bit of a relapse. I’m ok with it today…but tomorrow, I dont know what I’ll feel. Denial, guilt,anger, depression…RESENTMENT is huge.

      I am strong tho and I know that I am strong…as a person I mean. And what has been posted on this thread is fitting to all with a chronic illness. In fact, I’m going to print it out and show my mom…as she decides whether or not to battle her lung cancer.

      Prayers for you all.


    • Anonymous
      September 3, 2007 at 6:49 am

      I might be wrong, but……………………I thought this thread might be the one to announce my “third GBS helliversary”, today………..[B]September 3, 2004[/B]
      God bless and I love you all (GBS family),


    • Anonymous
      September 3, 2007 at 11:28 am

      Yes Perry, its a really good thread to post it. Well done!!

      I never faced the five stages after getting out of hospital 21 years ago. For about 18 years I wouldnt speak about it, I didnt even hear about it from my parents and would walk out everytime they broached the subject. My mom is a lifeline councellor, and they were taught that if you dont grieve initially it comes back years later (sometimes decades). Thats whats happening to me now, I’m trying to come to terms with living with Post GBS at 40, I still go into denial a great deal, specially if Im having some good days.

    • Anonymous
      September 3, 2007 at 6:15 pm

      Happy “Helliversary”, Per!! 3 years out! Not to shabby!
      Thinking of you! 😉

    • Anonymous
      September 3, 2007 at 8:36 pm

      Happy ‘versary, Perry! Just think, you are 3 years away from that crisis-filled day. . . It really is a good time to reflect on just how far you have come. No, it’s not life as you knew it before “the event” but it is still life. I won’t get into all of the “quality” issues but I do want to say that I’m glad that you are alive and thank you for all that you add to our “Family” 🙂

    • Anonymous
      September 4, 2007 at 1:55 am

      Thank you all sooooooooooooo much…….I come on this forum EVERY morning, (“early”, as you can tell :p ) So much information and comfort and understanding with this GBS family. I am addicted….;) . Ya’ll are such an “inspiration” to me!!!

      Thank you for being you…….God bless,


    • Anonymous
      September 4, 2007 at 8:44 am

      Per, Celebrate Man!!!:D Wow, look how far you have come! Keep It Going Per!!:) Big Hugs!!!

    • Anonymous
      September 4, 2007 at 2:52 pm

      I too, am a nurse. I’ve learned to work 3 days a week with much fatigue. Thank you for your eloquence in presenting depression. Some times noone understands. I use to jog 7 miles /day, ride bike 20 mile/day and still take care of my family. I have learned to except my limitations, although I don’t think my job has. Your words brought encouragment to me. That I’m not so different from most of you. This helps my perpsective. Thasnks for posting, it really made me assure of my self. God Bless xoxoxoxoxoxRoxie GBS 2000:o