Stressed out need some help

    • Anonymous
      September 12, 2007 at 1:40 pm

      Hi Everyone,

      I’ve been very stressed,frustrated and upset latley. I’m now a little over 4yrs from my onset to MF GBS, things haven’t changed much in the last 2 yrs and it’s so frustrating.
      I want to be able to do more and I can’t. I’m still walking with a cane and wear a foot brace, my neurologist says there is nothing more that can be done right now that I have severe residuals. He’s telling me I need to give it time. He can’t tell me when it will get better or even if it will get better.
      I was in PT for some time then they stopped it because I couldn’t last morethan 5 minutes with out crying from pains or having numbness and burning sensations.
      Also I don’t have the best insurance, I’ve looked into so many other options as well. Even talked with people at my local YWCA, they said I can’t take the aqua therapy unless I have someone with me because they don’t want anything to happen if I fall, they don’t take the chance.
      I just keep getting turned away which is also frustating.
      My doctor is even taking the time to look into places but I need assistance to be able to go or my insurance isn’t excepted. It’s a real bummer! I was taken out of PT 3 yrs ago. I really think the Aqu therapy will be a huge benefit for me if only one place would except my insurance.
      On top of that I’ve been dealing with the fact that my mom has Parkinsons, it’s starting to get worse and there isn’t a darn thing I can do. So I’m stressed out and very upset that I’m not able to do more, just not capable.
      I’ve been wanting to progress more so that I am in better condition to be able to take care of my mom and it’s just not happening. So I’m now worried when the time comes for her to need help I won’t be able to do that for her.
      She has been there for me from the very beginning and I really want to be able to help her.
      Does anyone know of a PT place in northern New Jersey that has Aqua Therapy? I could really use the help.
      If anyone has any advice I would appreaciate it!
      Thank you! Valerie

    • Anonymous
      September 12, 2007 at 5:23 pm

      Hi Valerie, Don’t give up! Aqua therapy would do wonders for you. Can you ask your ins to make an exception, check with a case worker, sometimes they know of ways around the mountains. I understand how you must feel in regards to your Mom’s health. A friend of mine has parks also, I hate to see him go from a vibrant man to a man who is more dependant on others. Its not fair! I’m sure you will be able to be a big help to your Mom, no matter what. I hope someone can offer more help in your area. Take Care.

    • Anonymous
      September 12, 2007 at 7:08 pm

      I can really relate to what you are saying, everything almost echoes how things are with me. The only difference, I have CIDP and deal with the severe residuals that may not get better.

      I don’t know if I have answers, but would you like to have an understanding email friend to talk to? Just click on my name and email m4e.

    • Anonymous
      September 12, 2007 at 9:38 pm

      Valerie it is amazing how much you will find that all of us can understand and relate to your situation. My mom has Parkinsons also! I try and call her on the phone each day but it is hard because I know we are both scared. Her of getting worse and me of how soon will I get better so I can have my independence. Think of it this way! You need to find a friend that you can to into the pool with. Someone somewhere is willing to help you just have to find that person or persons. It is a big responsibility but I am sure you will find someone. You just have to go looking for them. Make a list of the things you will need them to beable to do and post it at the YMCA. Specify you need a man or woman. And what their duties would be. Also check with some of the Doctors offices to see if they know of a client that would be interested. Active people with Arthritis might be in need of an aqua class but just need a friend. A student nurse, nurses aid or PT person or a life guard might be interesting in your request. How about someone from the Library, Firehall or local judge that has some people that have to do community service? Keep turning over those rocks and you might just find what you are looking for under the most unlikely location. Woman’s groups or Church groups or a Senior in High school or a college student looking for income or community service project for school. Others will have ideas too!

    • Anonymous
      September 12, 2007 at 10:55 pm

      I am basically in the same condition as you are; I walk with two AFOs for total foot drop, & need a cane for balance. I am 5 years out, so I am as good as I am going to get. But I have been going to water aerobics at my local YMCA for over two years now. They never asked me about any liability? But the class I attend is sponsored/partially funded by the MS Society of MN & is only $25 for 8 weeks & that’s twice a week. Maybe someone who is already in the class would be willing to help you out? What do you need help with? I wear my AFOs into the pool with water shoes keeping them in place, just use my cane to get to the pool railing…

      I am also the primary caregiver for my mother who is 82 & lives 4 blocks from me. Tomorrow I will be taking her to the doctor for the 8th time since June. No dx, she just doesn’t feel good, so they keep doing various tests. It can be so exhausting, but I do owe her, as she took care of me for the first 9 months after I got out of the hospital. It enabled my husband to go back to work until retirement. He has his own mother to deal with, as she has severe dementia, but he is keeping her in an apt. as she refuses to go into assisted living.

      I can so empathize with where you are at; but you have to be realistic about your condition, this may be as good as it gets.

    • Anonymous
      September 12, 2007 at 11:27 pm

      Hi Valerie: I am 2 and1/2 years out and still need a wheelchair most of the time. I can walk but not for long without great pain and fatigue. I am able to do water walking which is great and the only exercise I can really do without further injuring my leg muscles. Despite all that my insurance won’t cover water therapy either so I go to the local rec center. It is cheap and since I am not in a class no one can stop me. You might try water walking by yourself if you can’t get into a class. Some facilities put aside time for water walking even for those not enrolled. Good luck. Jeff

    • Anonymous
      September 13, 2007 at 12:07 pm

      My heart goes out to you. My daughter had GBS in 2005 at age 4 1/2. There was another lady in the community in her 40’s with it at the same time. My daughter healed much faster (due to her age) and it was so hard to watch our friend struggle. I will say she is still going forward though. Things can get better. Aqua therapy would probably be excellent for you. Maybe check out your local high school. Often a High school will have an “open swim” time for free or $1.00 or less. Also, if you have any retirement communities, with a Dr. note, they may allow you to use their pool.

      I wish you the best!
      ~Amy Kuncaitis
      author of “Joy in the Morning”

    • Anonymous
      September 14, 2007 at 11:54 pm


      I’m so sorry about your situation. I wish I lived near you so I could help. Do you have a free subscription to Neurology Now? They write a lot about Parkinson’s, although I’ve only seen a small blurb on GBS. I’d be happy to send articles to you if you don’t have them already. Just PM me your address if you’re interested. Wish I could do more!


    • Anonymous
      September 16, 2007 at 3:04 pm

      Hi Valerie,

      Call all the local hospitals like Holy Name, Englewood, Valley, or Hackensack, they could probably give you plenty of PT’S in the area.

    • Anonymous
      January 8, 2008 at 4:35 pm

      Hello Everyone,

      I would like to say thank you so much for all your ideas and advice. It means a lot to me to have so many caring people on my side. I’m sorry I didn’t respond more quickly I’ve been trying to get over a double ear infection and sinus as well. I’ve got an appointment to see an ear specialist, just want ot make sure everything is ok because it’s been just about two weeks I’ve been trying to get rid of all this. LOL!
      My mom has a sinus infection too.

      We are keeping strong!! Mom has been there every step of the way as I’ve been there for her. I would appreciate any information anyone has you can pass it along to me if you go to my profile I have my email address posted there.

      I’m actually starting Physical Therapy again!! YES! I’m really looking forward to it! I have my first appointment tonight at 6pm, then I’ll be going 3x’s a week until further notice from the doctor.

      I finally had an appointment with an orthapedic specialist , who I really like and get a long with well. This doctor is very pleasant knows of GBS,when I gave her the information for the Foundation web site she told me she would be looking into it and wants to have more information, to be well informed.

      I was really happy about that and wanted to share that with you all as well.
      I have a close friend who is going through a tough time right now she’s in the middle of a divorce, she said she would be interested in the aqua swimming her self and wouldn’t mind taking me, so we are holding off until her divorce is final.

      So it’s PT right now which my doctor said let’s take it one step at a time and not get ahead of myself. We are going to see how the PT goes and take it from there.

      I know things could be worse, my heart and thoughts go out to each and everyone of you. I’m forever thankful to have found this Foundation and all of you.

      Thank you so very much, if anyone needs a listening friend I’m here.
      All the best to you all, Valerie

    • Anonymous
      January 8, 2008 at 9:16 pm

      Glad to hear you are starting PT! I hope it does wonders for your spirits as well as physically!!

      Hugs from Iowa …..