My name is Jennifer, I was diagnosed in 1998. I have primary progressive MS. I need 24 hr. care and my husband of 12 yrs finally can't do it anymore. I'm scared, and I don't know whats going to happen to me. Any one else in a similar situation, Please talk to me. I am having such a hard time with everything and I feel so alone. I just need someone to understand where I'm coming from and what I am going through.
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Emotional Support
I have had MS since 91.....the first 9 years were without symptoms but I have had leg weakness since 2000,had to stop work in 2002, and have been unable to walk since Dec. due to muscle wasting from prednisone and immobility from 2 hospitals stays totaling 7 weeks.
I`m dependent on my husband to assist me via transfer board from bed,wheelchair, and commode.I require a caregiver 6hr per day while my husband works to assist me with the commode.We can`t afford this much longer and I`m unable to stand pivot to get into my SUV for appointments so I too am in great need of support.
I want you to know you`re not alone and if I find any solutions for assistance I will share if you wish.Kathy -
Jennifer,
I saw your post and I wanted to say that I am praying for you. I know how difficult this must be for you. My father had a stroke and he needed 24 hour care. I am sure that there will be many here who can offer you some good suggestions.HUGSComment
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Jen,
First off....take a deep breath, you AREN'T alone!
Soooo very sorry to hear what we all fear and you are presently experiencing. Have you looked at your alternatives? Any family support, that can help hubby? Friends? church members? physical/occupational therapy? Can you get someone to come in and give hubby a break, and take over for several hours a day? Have you talked to doc? Maybe a med change?
Are you at all mobile or able to do anything? I have secondary progressive, I was a nurse and no longer able to work, and it pretty much turned my world upside down and inside out! I am divorced, have a daughter in the Navy and if it wasn't for the support of family and boyfriend, I wouldn't be able to live alone. I can no longer drive, and vision isn't good, my mobility isn't good, very limited with a walker and legs are getting worse. But I take it day at a time....and know tomorrow is a new day! If you need to talk or vent....please don't hesitate to get in touch with me...you aren't alone. Take care!
~~~~~HUGS~~~~~~~~~~~
JEANNE
****email address removed from board as per our guidelines. You may put it in your profile****Comment
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Hello
Hi! I am new to MS world. I have regressive remitting MS and I was diagnosed in 2000. In the last year my MS has gotten a lot worse. When I saw the title of your post I felt I had to reach out to you. I moved to a new town a few years ago and I don't make friends easily so I rely on my fiancee' a lot. I am so sorry to hear that you are scared. I may not know exactly how you feel but having spent most of my life in and out of hospitals I know what its like to be sick, scared and sad. I wish I could be of some help or comfort. Please feel free to email me at screllum@yahoo.com if you want to talk or even complain or vent some anger. Sending you positive thoughts.Comment
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Welcome, Jennifer! Have you asked your doctor about home health care or assisted living facilities? I don't know your specific situation (size of house, etc.), but there may be help available you don't know about.
Are you in contact with the local chapter of the National Multiple Sclerosis Society (website: nmss.org)? They probably know more about what is available locally.As far as possible without surrender, be on good terms with all persons.Comment
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DON'T GIVE UP
HELLO, I HAVE HAD MS SINCE 1991WHEN I WAS A FLYER FOR THE U.S. AIR FORCE. MS DESTROYED MY FLYING CAREER AND HAD A HUGE NEGATIVE IMPACT ON MY CAREER. I HAVE A HAD A FEW BAD EPISODES DUE TO MS BUT HAVE BEEN DOING WELL FOR A FE YEARS NOW. MY ADVICE TO YOU, NEVER GIVE UP AND PRAY OFTEN. YOU ARE IN MY PRAYERS. REST ASSURED ALL WILL BE WELL FOR YOU.
ME
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re: emotional support
Thank you everyone for your responses. They've made me feel like I am not alone.
westie, i am in a situation where i can be left alone for a few hours at a time, i need a live-in and the fact i am getting a divorced people are talking about me going to a nursing facility. i am immobile physically, but mentally very aware. i don't know if that is good or bad. thank you for relating your story to me.
chocoholic, i do have a live-in caregiver so right now i am fine, he is still here but because i feel so hurt by him and everything he is doing and i do not want his assistance.Comment
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Take support where you can get it!
My first episode was in 1960 & no one knew what was happening. So I just drug myself around & continued on with life.
So 50 years later, I live alone in an accessible apartment with 2 aides that are here 30 hours a week. I work hard to do as much as possible on my own. But I can still transfer from bed to wheelchair alone. On a liquid diet & have a supra pubic catheter. So those 2 things I can do alone.
Ask us all questions. Together we can solve all the problems in the world!
KKComment
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