PPMS sufferer
 

Am I the only PPMS person out there looking for comfort in learning how others deal with this condition??
How long can I live without a cane? ...without a walker?? Should I tell my new boss???

ummm, gertrude. I left you a couple posts on the PPMS thread. Did you read them?

I never used a cane. I did not need one when I was first diagnosed PPMS. After a couple years, my MS had progressed to the point where a PT evaluated me. I wanted a cane but he had me walk with a cane and a rollator and told me to use the latter. I tried to convince him that I wanted a cane but he said my balance was better with a rollator.

There is no answers really. I know that is tough to process at this point for you. I am trying my best to offer comfort.

You and I have a few sx's in common and we are also close to the same age.

How long have you felt like you are trapped in a space suit?

Gertrude, have you lost the link to the posts you made earlier in October ?

If you go back to that thread you'll find lots of replies that you may not have seen.

I understand that may not be very familiar with computers, so I've made it easy for you. Just click the underlined link which follows, and it will take you back to when you first posted to the PPMS forum.

Please click this link, then take a minute or two to read the replies.
http://neurotalk.psychcentral.com/post819627-111.html

Once you've read those posts, you can reply either there in the PPMS Thread or here, it doesn't matter which one.... it's more what suits you best.

I hope that makes the forum easier for you to use.

Everyone has their own time-line. People who have PPMS like me walked with canes and I thought "At least I don't." But they stayed with a cane and I went from crutches to rollator to chair. But did a plateau last longer for me? I don't know. Wouldn't matter anyway. They may have bad pain but I really don't. I have physical issues but no cognitive. Maybe my past was better. But it is what it is and asin all life, what you decide to do with what cards you're dealt. I cry sometimes but rarely tell anyone.

[QUOTE=Gertrude;823746]Am I the only PPMS person out there looking for comfort in learning how others deal with this condition??
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No.

How long can I live without a cane? ...without a walker??
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Depends. Differs for everyone. You might not need either.

Should I tell my new boss??
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I wouldn't, unless really obvious and needed and would arm myself with ADA stuff/knowledge before. But that's me. DH says I like to fight. Maybe.

Kicker, maybe you can advise me about this.

How does one know that they've entered PPMS?

I've had MS for years even though I've only been officially diagnosed for 6 years. I'm finding that I really could use a Rollator now. I know it would help my walking. My balance is just shot.

But I'm wondering if it will make things worse? Will I become so dependent upon it that I won't be able to walk without it? I know.....sounds ridiculous but I think about it all the time.

Kelly, Are you thinking of SPMS? When I started using a rollator, I loved it. It helped me to walk like a normal person:). I could get places a lot faster, without losing my balance and when I got there, I could sit down. It was great shopping..:)

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Aw Kitty,
I don't know. I'm on neuro #5 (3 moved on me) and PPMS seems to be a dirty word to them. I asked each neuro directly my classification, certainly walked out feeling answer was PPMS, but a sense of most Neuros need very direct questioning.

I read somewhere some doctors (Who? Age? Never mentioned) believe aids lead to increased inability. Some don't. I know a wheelchair put an end to my falling, I think walking was over anyway for me. As PPMS, I do no DMDs, my current neuro is ok with that. Going to an aid (crutches, rollator, chair) was tough. But being in a chair gives me more freedom. I get to the toilet on time. The microwave no longer rings while I'm trying to g..e..t there. I go into places I once didn't. Good and bad.

You mean RR to SPMS. PPMS is from very beginning, some doctors think RR and PP are two totally different things all together. Jim is SPMS, Sandy On FB may have better answers

.

Yes.....I couldn't think of the name!! Wonder why? :rolleyes:

I think a rollator woud make things so much easier for me but I'm just hesitant about using it. I was the same way about my cane. But the cane really doesn't help me keep or regain my balance. The main reason I use it is so other people won't think I'm drunk! :o

I will get a rollator for me to use after I have surgery. With my balance being so bad I know it will keep me from falling. It's just hard to admit I need it. KWIM?

I Know exactly what you mean and I fought going from cane to walker and finally scooter, but was amazed at how much I loved them once I needed and used them.:)

Today I thank God for my scooter and a blessing to the person who invented them. I just couldn't live without it. KWIM?:hug:

That's when I got my rollator too. I had major bowel surgery with lots of complications after and I was extremely weak. That weakness along with my wonky left leg and already poor balance, meant that I just couldn't manage without one.

Now I'm back to using crutches or my cane 24/7 and only use the rollator occasionally, but I do like knowing that it's there should I need it on any particular day.

And no Kitty, getting a rollator didn't make things worse for me. It just gives me more choices for those days when getting about is more difficult than others.