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  • Helen8

    My daughter was diagnosed with MS when she was 18 yrs old. She is now 26 years old.
    She recently was accepted into the medicaid program after working the health care system for several years. She is depressed and confused as far as what doctors to go to since her neurologist does not accept  medicaid. She has not applied for social security yet. We
    are trying to support her emotionally and financially but it is difficult when she is inactive
    emotionally and physically. We live in Cape May County, New Jersey. We are very concerned.

  • maria1
    How are you
    Are you in pain
    Can you walk
    Have you gone outside today
    Have you taken a walk
    Did you eat today
    What did you eat
    Was it good
    What did you do today
    Can you describe what you are feeling today, what part of the body, exactly what it feels like
    How do you feel about monkeys
    Do they make you laugh
    Did you giggle today
    Can you giggle today
    Do you want pity
    How do your legs feel
    Can you read
    Do your eyes bother you
    What can I do for you today to make you smile
    What would it take to get you to smile
    Are you in pain
    Do you have any muscless in spasm

    And on an on the questions that enable her to focus on what is going on with her body before she thinks about her mind can help her. It is possible that the humidity on the coast may be adding to her misery. I sat for years inert, unable to move, and when I moved to Missouri the bones began to dry out and allergies were their replacement.

    You may think that she is inactive but her brain is working and not able to connect to heer mouth. As long as you relinquish your responsiblilty by often reminding her that to take really good care of herself then let her figure it out for herself.

    All you can do is ask her if she wants assistance with a task then giving her her autonomy. Losing her independence is a very difficult pill to swallow. Then there are all the losses that are physically changing her body and the image she has of herself, Would she like to go for councelling to learn how to cope with her new life. Maybe a trip to an art museum would perk her up.

    These are just some thoughts and ideas from my experience. But also your education about ms and you sharing with her how you feel about watch her suffering may add some perspective for her. Your active participation in the information gathering and the excitement of learning about all the facts known about ms that the years of research have uncovered and what the ms society has made available to us and you is remarkable.

    If you have a chronic malady it is grand to know that there is a living encyclopaedea at your finger tips. When I first got ms they did not tell me what it was and I spend years wondering why I was not like other people.

    We are feeling better when we giggle, can you giggle, see, feeling better already. Good. Welcome.
  • MS_Navigator_Robin
    Hi there,

    I'm so glad you've posted.  There are no easy answers in situations like this; you can take steps to support loved ones, provide them with resources and information, but ultimately it's up to them to take action.  Just as it's important to do all you can to support your daughter, be mindful of how important it is to also take care of yourself during this difficult time.

    Below are several resources that I thought might be helpful after reading your post.  If there are other resources you think might be helpful, please don't hesitate to post again or contact us directly via email or telephone (1-800-344-4867, option 1).

    In terms of finding a neurologist who accepts Medicaid, I encourage you to call the NJ Medicaid office (1-800-356-1561) to request a referral list of providers in the area who are currently accepting Medicaid.  You are welcome to contact us if you wish to cross-reference their list with a list of providers in your area; we will be best equipped to provide this if we have your mailing address so we may do a radius search.  Please contact us via email or phone if this would be helpful.

    Information about applying for Social Security Disability Insurance is available on our website.  A much more detailed overview of the process is available in our SSDI Guidebook for People Living with MS.

    The Greater Delaware Valley Chapter offers support groups throughout the region; many groups are open to people with MS as well as to family and friends.  Contact the group leader for more information about the dynamics of any group you or your daughter wish to attend.

    If your daughter is open to individual or family counseling, the website HelpPRO is a great resource to locate providers, or you can contact the provider below who is listed in our database as a mental health professional and has reported they accept Medicaid in Cape May County:

    Cape Counseling Services
    128 Crest Haven Rd
    Cape May Court House, NJ 08210-1651
    Phone: 609-465-4100
    Fax: 609-465-2588
    Website: WWW.CAPECOUNSELING.ORG 
    Comments: Full counseling service. Has experience with chronic illness & disabilities, Has an income based sliding fee scale. Accepts all insurances including Medicare and Medicaid. Office is wheelchair accessible.

    Finally, we offer several publications that may be of interest:

    I hope this helps, and I hope you'll reach out again if more support is needed.

    Take good care of yourself,
    Robin

     

  • barb95
    Hi there,

    I feel your and your daughter pain. I am sorry.  I have two kids myself, and no day goes by without thinking about it.
    In addition to the info I read, I would say that before you file for SSD hire a laywer, otherwise it will take too much time to get the help she needs. This is from my own experience. You can hire a free attorney through free legal services for senior/alderly. If not, the attorney will charge you after your daughter wins the case. Talk to the attorney if your daughter can get medicare.  That will be much better and easier for her to go to the neurologist. 
    If your daughter is a religious person, praying might be a powerful tool for her spirit.  She needs to move even when she is in pain. Her muscles need to be strong and active, otherwise the disease will progress much faster.  Another thing she might consider is to eat very healthy starting with wheat bread, pasta, rice, smothies with fruit and vegetables mixed together, all kinds of nuts if she is not allergic.  To keep her energy level up, you must consider using Ocean Alive liquid supplement. I order that online. Search by pure marine phytoplanton. For muscle spasm and pain I order Sothanol X2(liquid) that I order through North Star Nutritionals.  Both cost aroung $40 dollars, but it is worth it.  They keep me moving. 

    I hope this information helps your daughter as much as it could! Sincerely! Barbara  
  • Helen8
    Thank you any insight on this subject is very helpful. She has secondary progressive MS.
    Today she did go out to breakfast with us and also went out to basket weave with some friends. Besides being in the medical profession she also basket weaves. I usually ask her how she is doing everyday. Very rarely it is a positive response. I keep encouraging her to go out and do something she likes to do. She usually sees a general counsellor once a month. I know she is frustrated because she wants to live on her own. Her younger brother is graduating college in December with a bachelors degree. She at one time wanted to be a doctor, then a nurse. She did graduate LPN nursing school, however everytime she went to take the test to be certified she would relapse and fail the test.
    The medical field was to demanding physically and mentally and that is when she applied for permanent disability. Then it seemed all down hill from there. She has quite a bit of plaque on the brain which causes vision loss and one side has no sensory feeling at all.. We keep her car going so she can drive when she is able to.
    We do want her to be happy and as independant as possible.
     
  • maria1
    Dear Anon,

    It should warm your heart that your daughter has the ability and motivation to go to basket weaving with friends and out to breakfast with you. secondary progressive ms is a big deal and everything she can and does do is remarkable.

        That she is albe to get herself together, go out and sit and be social is a hundred percent great. It is like a present. There are many of us who are not able to accomplish those feats and we only have relapsing remitting ms. Bravo for her.

        Now let us consider you feelings and what you want for her. Can you share with us what it is like having a daughter with ms> What the disappointments and fears and how you handle your loss of the dreams you had for her. Some of us have no children and have no idea of what it is like for a parent to watch their child live with a chronic illness. Thank you. maria

  • maria1
    Anon/Barbara, Hi!  Please tell how you first heard of pure marine photoplankton andhow long you have been buying it. What dosage do you take daily? Are you familiar with inosine? an amino acid that body builders take to add oxygen to the muscles? Thank you. maria
  • barb95
    I read a lot online, and one day I ran to this product. First, I hesitated, but later I thought let me try it. I only order one bottle. You mix 10-15 drops of it daily with 4 oz of  juice, water,  or whatever you like.  It doesn't smell bad. In fact if you use juice you won't taste the fish smell at all.  This protect brain, eyes, muscles etc. I am taking it for a almost a year now. I am able to see the difference it makes in my energy level.

    I don't know anything about inosine.  Do you buy it as a powder or pill? What else does it help with? Let me know please. Thanks! Barb