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i hate having to depend on others
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kymomma24 posted:
Okay i'v had MS for 4 years now started out with seizures i had one after another lasting for 10-20 mins was in the hospital for 3 1/2 weeks after a LP and a MRI they found several les. on my brain. the seizures have stopped havent had one in a few years how ever do to this i had to quite college and driving is out of the ? bc i am also leg blind do to this stupied ms thing and now a single mother living on ssi 752 a month unable to get around with out asking someone to take me places, and having to live with family all the time makes me feel like crap and my family dose not understand that, and dose not see it as being that serious and i hate not being able to do for myself i'm always tired my hands twitch all the time and here lately i keep droping things cant talk to my neuro bc its almost 2 hours away and no way to get there, i havent seen him in almost 3 years my pcp keeps telling me to go see him how ever i'm lucky to get to see him. then i start feeling bad bc i am just self pittying my self ugh anyone have any advice
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grandma544 responded:
I think all of us have trouble asking for help when we were so used to being depedent. Someone once told me to think back bbefore MS and how willing I would have been to help and hhow good it made me feel. This hit a chord with me and she was right. Remember all those people that have offered help they really mean it and if you reach out to them if they can help I'm sure they will. This is a really tough situation to be in I hope you can get someone to take you to your Neuro you really nee o see him. Good Luck.
 
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An_253571 responded:
I have had MS for over 30 years. I have found lots of ways to cope. There can be no "self pity" with this disease. Just identify the problem symptom and then use the solution (even if that means a cane, rollator or wheelchair or shower chair or grab bars) Early on I was very "arrogant" and thought I would never get bad. I learned different. Don't be ashamed of having the disease, it's not your fault. It will be your fault if you do not accept a solution or equipment that helps. Living with this disease is often both a challenge and a progression. Learn to smile and laugh at life. That is a conscious decision, and you can program your mind to see the humor in the situation.


So here are some suggestions:
1) the MS Society has lots of helpful services and information on solutions and symptoms, including counseling, support groups and an equipment lending closet; they usually have local/county centers, but you can also find them online and they will have a 1-800 number you can call for help (I volunteered with them for years, they will understand and have suggestions for every problem you have. They also keep lists of local doctors; there may be a nuerologist closer to where you live that you can see)
2) your local county should have paratransit buses that you can apply to to provide some independent transportation
3) I have been taking Tizanidine HCL (4 mg) for years, it totally stopped my hand and eye tremors (I take it at night because it causes drowsiness)
4) the library has free audio books that you can download to your computer (both for adults and kids - you can listen to them together with your kids as family reading time) There are lots of good books that describe symptoms and treatments for MS.
5) many state universities have online courses; you could take one class at a time
6) learn your energy limits and then be sure to get the rest you need (don't let anyone bully you into doing more then you can manage)
7) primrose oil and fish oil help to ease movements
plan things with your children early in the day; because the longer you are up the harder it can get to function(unless you are like me - a night person)
9) local social service agencies often know about volunteer groups that will give people free rides to dr appointments (if you can still walk and are not in a wheelchair)
10) local community centers often have free or subsidized programs that you can do with your children
11) check to see what services your city and county offer for the disabled (you qualify under ADA)

But mostly, check with the MS Society. They have been through this with thousands of people and they have seen every possible MS problem. They have both professional staff, and volunteers who have MS. They all understand. They also are aware of the latest treatments and solutions. This makes them a great resource.
 
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moccio578 responded:
I feel the same way. I don't have the symtoms as you, but I ddo get fatigued and slight tremors. My ex- husband destroyed my car and is refusing to pay court ordered child support. I feel that I can drive. I haven't been told otherwise. I just want to be able to do quick errands without waiting for someone to take me on their time. I just want to be able to have some me, time
 
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linda_dulin responded:
If you are on Medicaid, check and see if they offer Transportation. Here in Texas, they do but it is offered county by county. So call the number on your Medicaid or Medicare card and ask about Transportation help. Also look for your local "Center for Independent Living". There is a national Center for Independent Living, but I don't remember the name. If you have a computer, you can do a search using the term: Center for Independent Living Plus ( ) your state. That should help.

I hope and pray you get some help. I know that without my Center (that has a MS support group) I would be up a creek without a paddle because my husband is seriously in denial about this disease and how it affects me.

Blessings
 
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SnowCrystal5 replied to An_253571's response:
you have some very good ideas and I plan to use them! Wish me luck! SnowCrystal5
 
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kymomma24 replied to linda_dulin's response:
for me its mostly my family that dont understand the disease! they are the kind that thinks if they cant see it its not real so of course i have nothing wrong with me. and the lp and the mri was wrong i really hate that. i have learned to deal with it on my own mostly if i keep droping things i just tell people i just put lotion on if my leg goes nomb i just tell them my leg is asleep things like that. i really really hate MS
 
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linda_dulin replied to kymomma24's response:
Dear kymoma24, I know what you mean about family. My own husband of 15 years is in complete denial. However his Father is a wonderful person who goes with me to whatever medical visits I need if he can. I do rely on the Medicaid bus when ever I can. But my "PAPA" is always there as a backup. Because he actually goes to appointments - he understands more than most of my family. Sad to say. Most either don't understand, don't care or think I am asking them for something every time I talk to them. My Dad is a ALZ patient in early disease and a very angry person (always was for that matter) and my Mom is doing the best she can, but cannot drive any longer, so to see them I have to depend on my husband. And he hates to drive for 3-4 hours to see family and says he can't afford to loose time at work to go to dr appts. Of course his company is under 50 members so no FMLA. So hang in there and try to build a support team of friends and members of your local support group. That is essentially what I have had to do.

Blessings,

Linda


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