Stressed out need some help

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.

Hello,
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.

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!

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.
Pam

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

Valerie-
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”
[url]www.joyinthemorningbook.com[/url]

Valerie,

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!

–Shannon

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.

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

Hugs from Iowa …..