Hi there

I am a mom of 4 lovely girls ages 16, 14, 14, and 9. I have MS , OA, and missing bone in my knees that is said to be hereditary. As a kid I used to wear leg braces for my knees and hip. I have used a wheelchair once as a child, but have not used one since. I am now on MS meds and having some problems with severe fatigue , finding right words, being too slow, tyring to keep up tires me out. I have a kitten who loves me to bunches. She will dote on me and give me kisses, she is so cute - her name is Cutie. I play world of warcraft for the last 3 years now. I find it hard to play now because of various reasons. The guild I play with knows I am having more troubles now and they help me be included which is nice.

I have been a CNA, but have not worked in the field since 2002 becasue of a back injury that made it so I couldnt lift over 15 pounds. At that time was hard becaseu I couldnt lift my youngest then. Over the last 4 years my MS has gotten so much worse and also my OA. I am on several meds - some for OA and pain, rest is for MS, diabetes. I am worried that I am too slow now. I goto cross the street and i get halfway and the light is red. I am trying to avoid a wheelchair... but I am so tired now that I wonder if I am just being too hard on myself. Some one said a few meds for helping with fatigue but I forgot what that was.

I will talk to my doc about that agin on the 25th when I go in for my Tysabri, but last time he was all saying that is part of the disease and that I have to learn to manage my energy levels. I dont go out now tho,, except to doctors or grocerys. Kids miss going to zoo and aquarium.. what can I do? This is why I searched and found here. I hope to find some friends, who knows what is going on and can understand what I am going thru. So much seems to be going on and people from world of warcraft - well its hard for them to hear/see me go thru all this and they dont know what to say..

I talked to doc once about a wheelchair, he told me no before and I got forearm canes.. but I am so slow with these and get so tired out. How do I talk to him and get him to listen?

Pooh

[jojobc]

welcome

I am glad that you found this. It is a great resource for us.

You should definately ask your doctor again. In this new world of medicine, I've learned that you have to be your own advocate. No one else will do it for you!

Good luck.

[KoKo]

Hello Pooh

Welcome to MS World!

I am a mom of 4 lovely girls ages 16, 14, 14, and 9.

I have a kitten who loves me to bunches. She will dote on me and give me kisses, she is so cute - her name is Cutie.

Sounds like you have a fun family!

I have been a CNA, but have not worked in the field since 2002 becasue of a back injury that made it so I couldnt lift over 15 pounds.

I was a CNA for over 10 years a long time ago. You definitely need a good back for all the lifting, bending, etc. that the job calls for. It was a very tough job, but helping the elderly and disabled was rewarding.

I goto cross the street and i get halfway and the light is red. I am trying to avoid a wheelchair... but I am so tired now that I wonder if I am just being too hard on myself.

I talked to doc once about a wheelchair, he told me no before and I got forearm canes.. but I am so slow with these and get so tired out.

I have found that using a roller walker helps with my walking and I get a little less tired. It also helps me move a little faster. Much easier and less tiring than forearm crutches. (I have used those also.) Using the roller walker helps me to conserve energy.

I hope to find some friends, who knows what is going on and can understand what I am going thru.

You've come to the right place for support and understanding! You'll find interesting topics for reading and sharing too.

Hope to see you around. Best to you and your family.

Take care,
KoKo

ohh

I Didnt know rollerwalker is easier. thoght them to be the about the same. Maybe ill try that before a chair, but I am considering that. so far tho my doc doesnt want me to get a chair, can he do that? or a scooter... something.. i always tell the kids no to goto the zoo or aquarium now.. I just cant do all of that on top of the 1 hour ferry. I see doc on tues for Mri and appt.. will talk to him about all this that going on,, that and i just dont feel good. guess we all have days like this tho.

[KoKo]

Hi Pooh

One of my roller walkers has a seat on it, to rest when tired.

so far tho my doc doesnt want me to get a chair, can he do that? or a scooter... something

You know Pooh, that really puzzles me that your doctor doesn't approve of a wheelchair or scooter.

We definitely need to conserve and budget our energy, so we can do the things we need or want to do, and have a quality life. Usually doctors understand that.

You need his approval for the insurance to cover the cost, is that right? I wonder if your chapter of the National MS Society has a loan closet. (My chapter does.) They will loan out wheechairs, scooters, etc.

In any case, I would explain your needs to your doctor at your appointment.

Feel free to ask any questions, and we'll help if we can.

Take care,
KoKo

[tribal]

Hello Pooh and all MS forumers!

Just wanna say hi. Im new here. im 35 and act as personal caregiver of my mom.

pooh, please take care of yourself as always

[0485c10]

I talked to doc once about a wheelchair, he told me no before and I got forearm canes.. but I am so slow with these and get so tired out. How do I talk to him and get him to listen?

Pooh

There is an MS'er in my town now in his 50's but was diagnosed in his 20's --now full time in a w/c and not certain how much of it is because if his MS and how much of his full time status in a w/c is because of his premature use of starting to use one in his 20's-30's?.

He had a lot of family disbelief & antagonism against him because of his "MS" and the things he couldn't do, he started using a w/c to get them off his back. And he is not certain when it became permenant all the time. So perhaps that is what your doc is trying to avoid---the rollator sounds better than fore arm canes. I have a few I used during relapses, I walk without assistance now.

There was a time I couldn't get across a street before the flashing red light went on too-but now I don't have that problem on most streets.

Why do you need your doc to get a w/c or rollator? I got an inexpensive manual w/c for relapse after a person with MS for 20 years told me she had gotten one and it made her feel more in control of this damn unpredictable disease that she was ready to handle what it threw out at her.

I have to admit, having that inexpensive manual w/c in a closet does the same for me. And once I was even able to lend it to someone with a broken ankle who needed his hands to sort things and have the ability to move too. I felt good about being able to lend it.

I limit my walking distance somewhat so I remain walking unassisted, but I live alone, don't work. If I had a need to walk longer distances I would look at a w/c too.

I have read a few that started using one to maintain employment, because they got less tired by not walking their hands worked well enough for them to continue to work.

The rollators are great! And some do come with a seat and also very light weight ones if I have to move them a lot. I have a light weight one I am able to fold at the top of a stairs, slide it down the stairs so it is waiting for me at the base of the stairs for me to unfold it & start using it in the basement.

But I am uncertain why you need your doc's okay to get a w/c? I just got an inexpensive manual w/c. Probably the motorized ones you would need your doc for insurance coverage--but an inexpensive manual w/c for long distance walking trips?

I got my first cane & rollator from goodwill & salvation army store. The aging population is to our benefit to get things like that used and inexpensively. Maybe try amazon too as a possibility.

[borakikay]

Hello there, i'm new here in MSworld. Hope i got a new friends here.. Add me up Thanks

[KoKo]

for borakikay

Hello Borakikay

Welcome to MS World!

If you want to start a thread of your own and tell us a little about yourself, here's how:

Go back to the Tell Us About Yourself Forum page.

Just below all the Threads, on the left side, you'll see New Thread. Click on that and you can start your own thread, if you want to.

Take care,
KoKo