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Severe progressive MS -- need help please

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    Severe progressive MS -- need help please

    Hi, everyone. My mother, age 56, has severe progressive MS. She used to come to these message boards but has almost completely lost the use of her hands and hasn't been able to type for several years. I don't want to scare any of you but things have gotten worse than I could possibly have imagined.

    She was diagnosed in 1996 by a neurologist who said "I don't think you'll get much worse." She was walking then with some difficulty. She is now bedridden and has no use of her legs, and as I said, has almost no use of her hands. What scared me today is that she told me she is afraid she soon won't even be able to eat or use the phone with her right hand (the left is now useless.)

    I have given up my life for her care. I am 28 and I have no life beyond this hell. I am so frustrated because I have searched the internet over and over and I can't even find information about someone whose condition is as bad as hers. For years it was too hard for her to get to the doctor but she finally had to go to the hospital last year for a colostomy because her bowel troubles had become completely unmanageable. She saw an MS specialist there who was no help at all, beyond saying "I don't think the colostomy will improv equality of life," which to me showed a complete lack of awareness of just how badly disabled she is.

    NO ONE understands how bad this is, and I have no idea what to expect. I am honestly afraid that she will live for many years, completely paralyzed. Her progression has been steady and in some ways fast, but in other ways slow. I am terrified that she will live a miserable life, completely paralyzed and unable to even use her phone to call for help so she can be left alone for brief periods. As it is, I am home almost all the time. We qualify for no financial aid whatsoever, as she was a stay at home mom and can't get disability, and my dad earns too much to qualify her for social security.

    I have been absolutely miserable for years, and even though I don't think anyone will have anything helpful, I just had to write this. Again, I am sure this is a worst case scenario, so I hope this didn't scare anyone.

    I'm so sorry -- my heart goes out to you, your mom and your dad. MS can be such a monster.

    My husband has progressive ms so I know how you must be feeling, although he retains his upper body function for now. Still, I know that eventually he could progress to your mom's level of disability, and that thought terrifies me.

    I've found over the years, that absolutely no one on the "outside" understands where we caregivers are coming from. Sometimes ( and I don't want to offend anyone with ms) the caregiver has it as bad as the one with the disease, because we're left to stand helplessly by as our loved ones suffer. At the same time, we have to do what we can to make their lives better, often letting our own health slip.

    Do you have all the assistive devices you would need to make caregiving a bit easier? Hoyer lift etc? Do you have any paid assistance at all so that you can have time away? Sometimes the MS Society can direct you to home health agencies. You will need to have a break from this or you'll get sick too -- and you are important and need to have a life of your own.

    Has your mom ever thought of going into long term care? I know you don't want to do it but sometimes, when you feel you have no life and no future otherwise, it's something that needs to be considered.

    I could not do all the physical care that my husband would require once his ms progresses to your mother's point, and I've told him that. After dealing with ms for almost 20 years, I'm worn out. He has already told me we will hire aides or if necessary, he will go into a care home. I hate the idea of that and it breaks my heart, but I also know my limits. I'm 60 years old and not as capable as I was at age 40.

    I do know people with severe ms who live at home, but they for the most part have paid help at least some of the time.

    No one person can do this alone -- not even Mother Theresa did 24/7 care.




      I feel for you. I really do. I will keep you in my prayers. I think you have a very hard row to hoe.
      I want to offer you a ray of hope. Look up Dr. Wahls and get your mom on her diet. It rescued the doctor from severe disability. What have you got to lose? Dr. Terry Wahls is her name and she lives without severe disability. If you find that the MD's that you consult have no treatment for you, you have to find it yourself. Wish you the best. Good luck


        Hi Maynard,

        Dr. Wahls does have what seems to be a promising diet, but she also used neurostimulation of the spinal cord to achieve her currently wheelchair-free state.

        Her book is Mind Your Mitochondria by Terry Wahls, M.D. She has a new one currently in edit.

        Or she has a website:



          I am so very sorry.

          Does any MS Neurologist offer any help for her?

          Reaching out and explaining how your mom is strikes me.
          I had a friend who passed from MS.
          Her mother contacted Hospice and they helped so much.

          You are a dear for what you are doing to help your mother.
          Try to feel your soul, too. You need that.

          I'm sorry for the situation.
          Please know I'm thinking of you.

          And this rose is for you mom:


            Thank you for the answers. No, neurologists have no help for her. She takes Copaxone but nothing so far is proven to help progressive MS. She has been doing leg and arm exercises for years to try to keep her strength but that is getting progressively harder. We actually have to move her legs for her, and before long we'll have to move her arms for her too. Nothing helps.

            Skyeblue, no, she receives absolutely no benefits or aid of any kind. We don't have a Hoyer lift; for now she can be lifted to her scooter with a gait belt, but once she loses her limited ability to assist with her arms, I know that another method will become necessary.

            Obviously long term care is the best place for her. The tragedy is that for my dad to be able to afford it, he will lose the house he has been paying for for the past 15 years. He doesn't even have enough equity in it to sell. And it would also put my sister and her family out of a home, because they live in an addition to the house (which sadly is what drove the mortgage so high in the first place.)

            My mom is soooo dependent on us emotionally. I think the emotional devastation of being put into a care facility, with no ability to even use her arms to operate a phone, computer or remote control, and no loved ones nearby, would be an impossibly depressing and isolating situation. I truly feel like there are no options, and my life is slipping away from me as I devote year after year to this depressing burden.

            I will look into the Wahls diet but I have very little hope. I severely doubt that Wahls had the level of spinal lesion damage that my mom has, and that can't be undone. She tried a very healthy/organic diet years ago with no results. I will also look into hospice, although with MS not being classified as a terminal illness, I have no idea if they will help.


              Their may be more options

              Dear Maynard,

              I read your heart-breaking story and the first thought that came to my mind was there are always options.

              I think your family needs to speak to an 'elder-care' attorney. I have one to help me qualify for medicaid while still having assets. There are ways to maneuver legally. Lawyers who handle special needs trusts and pooled trusts are who you need to speak to. Google it.

              I think she needs a new medical opinion. Has Chemo been tried? Botox? The Easter Seals Foundation has an Assistive Technology Program. The helped me with assistive devices including dictation software for the computer.

              The MS society has case management services that you should consult for ideas. Ask for their Social Worker.

              I am near your Moms age and am quite disabled but not nearly as much as she. I took care of my chronically ill Mom for most of my life. She had UC not as bad as MS but tough. Based on that experience I decided not to have children. I didn't want them to go thru that when I learned I had MS. I regret that now as having no family is very lonely. I don't think your Mom would want you to give up your life. Spend time researching resources - especially medical and legal.

              All the best,





                A health condition does not have to be considered terminal to qualify for hospice. A condition called "general debility" is something that also qualifies a patient for hospice care. Please call them and ask for an evaluation. This is often free of charge. They will tell you what is covered, and if your Mom qualifies. I'm sure she will qualify from what you've said.

                They are also trained to assist the patient and family members in facing up to the decline in quality in life.

                We just lost my 88 yo former MIL to a severe diabetic ineuropathy that affected her entire body. She was also basically paralyzed from the neck down. She could not assist with her care at all for the last two years, and was in a nursing home. None of us could
                quit our jobs to care for her, and even if we could, we would not be able to lift her.

                My one regret is that I didn't get Hospice involved sooner. They helped us with volunteers to sit with her and read or visit several times a week, and helped with baths and other personal care.


                  I completely understand this. I have PPMS for almost 7 years. Within 6 months I can barely walk with my walker. My legs are severely numb and painful. My hands and arms are getting numb and painful. I am sure I will be in your mothers situation within 10 years. I have no hope. There will be no cure or treatment for me. I am too afraid to commit suicide. I guess I will just have to see how this nightmare I call life will turn out. Good luck with your mother.


                    I,too , have the dreaded PPMS (dx'x 2009). From the tone of your post, it seems that you have 'tossed in the towel'. I am sorry for you. All of us MSer's are in the same boat. The meds don't cure anything. And for progressive forms, there is little research and drug development.

                    Well, even though the medical community has given us short shrift, I will not be defined by that. I refuse to give in to MS and the culture that has built up around it. I have researched everything I can online and it seems that diet and vitamin supplementation is an option that has been used, clinically, since the 1950's and it seems to have some validity.

                    It isn't terribly expensive, it isn't toxic and the only side effect is one will probably lose some weight. I've lost 10 lbs. sine April. I can stand to lose 30 more.

                    Please do what you want, but my hope for you is that you don't give up ! Remember, we are all in this same sucky predicament. All of us, 400,000 Americans ! Good luck


                      I've had PPMS since 2006 and I don't even think about next week, never mind 10 years from now. Hang in there, you never know what's around the corner. We're all in this together!


                        I DO know what it's like to see someone with MS like this. My aunt had MS like this when I was a child. The memories have haunted me ever since.

                        You are at such a precious young age to have this burden placed on you. It's not fair.

                        I just hope you can find the resources to make it easier for you. Caregivers need care too.


                          Progressing quickly myself

                          Go to some of the SCI sites on line. SCI = spinal cord injury. A lot of the ALS sites are also helpful.

                          Christopher Reeves site is a great comfort for me. This is the MS that people don't want to hear about. But we are speaking up & not going quietly. End stage MS even has a page at

                          I have use of only one arm, my right one thankfully. I type with a Dvorak one handed keyboard. So I have on line connections. Speech is gone also. I have a speech machine, DynaVox, that is a huge help. It is point & click, but can also be used to type with.

                          There are many of us out there. Send me an email if you want more info.



                            A few short days later and my severe pain and numbness has at least doubled. I can only sleep if I stay up for like 30 hours and even then I wake up about once an hour. The only way I can describe the pain is like wasp venom has filled my feet and legs. I really cannot imagine pain worse than this. I was telling my doctor my pain level was 10 over a year ago. Compared to this that was just mild discomfort. I live in hell.


                              Thank you all for your responses. I will look into seeing what hospice and an attorney can do for us. Boognish, I wish I knew what to say. I hope it will bring you some small comfort to know that there are those here who understand your pain and frustration. You are not alone.