I must admit, when I was DX's 25 years ago the last person I wanted to talk to was "that cripple" on the other end of the phone. Then, as I am now, I was in denial. I did not want to see the person with "Bad MS", because I did not want to be that person with "Bad MS". Seeing "Bad MS" only served as a reminder to what my fate might be.

I am somewhat in that state of mind today. This might be why I have never felt a desire to go to support groups or MS functions. Though I use a wheel chair for some functions, seeing other MS'rs can sometime make me uncomfortable. Maybe it is a phobia, but it is what gets me by.

Reading between the lines on your origional post, yes discrimination exists, some of it is actually self discrimination.(yeah, I'll see my self in court over discriminating against myself).

I have not seen the post that upset you so much, but I do feel bad for the husband that is only trying to help his wife. I think MS can be as hard on spouses as it is on the person who has MS.

Jen - I did see the reply that you are referring to....and I agree with you. I think that man was genuinely looking for advice to try to help his wife. I'm not sure why things went so awry....my only thought is that it can be very difficult to express tone and emotion with the written word - leaving a lot to interpretation or shall I say mis-interpretation.

Anyway, I also agree that there is a need for a PPMS/SPMS discussion group. I was RR for 5 years or so before becoming SP and I would give anything to be RR again. Granted everyone is different - I know that. And what I am about to say is not true for everyone. But for me RR was nothing. I had one episode of optic neuritis at diagnosis, which cleared up with IV steroids. But otherwise, I felt great! I was completely normal. And for the next five years I took CRABs as my doctor advised, but I did not believe for a minute that I had Multiple Sclerosis. Until one day – as suddenly as a flash flood – I could not walk. At first, I could walk for 15 minutes or so before having difficulty…..but gradually day by day – 2 years later – I can barely walk from here to there with a cane. Now I believe I have Multiple Sclerosis. My only point is that people with progressive forms of MS may be experiencing a somewhat different range of emotions and challenges. So, thanks for starting this group. And I hope others will agree. (Not that we can’t intermingle mind you…..) :)

To me having progressive isn't as scary to as having relaspe remittance. For me if I had RR I would be so worried another attack would come about. With progressive (at least for me) my symptoms are always there some days worse some days better. By no means am I getting better but MS has not stopped me from living a fairly normal life.

I have had ms for 20 years rrms at first now i have ppms and it scares me to death. ive had 3 relapses since diagnosed. but many symptoms i now walk with a walker and am very weak ony left side. It has hindered me from liviong a normal life as much as i try not to let it, but thewres only so much u can do. and i hate it when people insist on helping me its like let me do it myself if i cant ill ask for ur help. Thanks for stsrtion the group.

my hubby wants me to ask nicly say please and thank you, he says its ezer to help if u r nice. So I oblige but he doesn't get it. I don't want to ask him for help, I don't want to need it! but I do. Its like hes rubbing it in my face, he's not he just wants me to be calm, nice. He's rt its just so dam hard. If I had my druthers I'd do it myself. my dad always said " theres the wrong way and my way" so feeling that way u can c y asking my husband 2 do sumthing his way is......difficult.

And I thought I was special....lol Why is it we don't want anyone helping us? Is it because we think it makes us look weak, dependent,. I am the same way. I get so frustrated when out in public with a frend, they always grab my arm to help me, run to pull my seat out for me. If I excuse myself to go to the ladies room they jump up,"want me to go with you"? NO, IM NOT AN INVALID!!. My fiance is the worse....careful now, be careful now, let me help you here I will get that, careful now, here take my arm, here let me do that...careful now, watch where you are going.GRRRRR!!!! I have lived alone for almost 19 years, so you can see why it is harder for me to let anyone help me. I was always the caregiver, was a Hospice volunteer for 13 years, I am use to taking care of people...i's hard making such an adjustment to being on the other end now.

@dIane812 - I just don't like feeling stupid. and all that "reminding" me to be careful ain''t helpin. I know I know people just wanna help. My mother-in-law even ask my husband y he doesn't help me walk wiith the baby/(like 4 yrs ago). and he said "Jenny would hate that. She'd kill me." People are just trying to be helpful,nice, I wish they would just let me try and help me if they c I need it.JUST LET ME TRY! Drives me batshit trying to be pateint w/ people that are really being nice and I end up yelling or being short.I get short when I get fatigued. "well just tell me how" if I had the energy to tell u, I'd just do it myself! Then I get this whole spiel about being nice and ask nicely aaaah. DON'T YOU GET IT I DON'T WANNA NEED YOU. BUT i DO AND i HATE IT! Then que arguement till I cry and say I was mean. Cuz I was, but not out of meaness out of frustration at my fatigue,weakness, pain etc.
How do you tell'm to back off nicely?? i dunno.

I have even gone out of my way when somone tried to do something for me, and said." I apprecite your offer, But, I really need to do this for myself. They usually back away and say oh sure, just let me know if I can do somehing.

this is such a great thread jen. i feel exactly the same way about asking for help, that many times i screw myself by doing what i shouldn't anyway. just to prove i can. i just swept the kitchen floor, dragging my walker with me, while my husband sat his computer working. 35 year later, he is still in denial at this whole thing. i need to "act" like i am ok.dx with sp one year ago, and i hate to admit my 80 yr old mum is the one who does not judge my needs, realizes i need to often lie flat for 10 minutes often throughout the day to kinda move around
felt good to just write this...many hugs to all, connie

someone with ms discriminated me on the other group because i said i think i have ppms. i know i have some form of progressive ms, but my memory is so bad because of the ms, i don't remember which kind the neurologist said. i never said anything on here because i was scared of getting my head bit off again.

It's a little like 'damned if you do, damned if you don't'. It is hard to be an independant person, wanting to be able to do everything yourself, and not being able to. I get impatient with people either excessively trying to help or the opposite, not noticing. Not fair on my part really, sometimes I grump at people in both categories!

I have experienced every kind of discrimination in my life: racial, gender, class, so I'm not surprised that there are those that marginalize people with different disabilities/ symptoms and needs. I've experienced the lowest treatment of others because of being 'different' . People can be miserably insensitive all the time.

Boomer51- that is exactly the way I feel. . . it isn't fantastic to be slowly losing my mobility, but frankly I think it is far less scary than maybe suddenly losing my sight etc. . . Someone who was new here once told me that she was SO SORRY for me when I told her I have PPMS, and I came back to her with a why?? It is what it is. . .
It is VERY HARD to need help when I want to do things myself. Lately I have had an ambulance pick me up every few days to take me to PT, and a few times the ambulance drivers have offered to help me upstairs. I laugh and say no of course, since I am still managing to get back up those stupid 20 stairs every day that I go to work, and better not get used to getting help since the rest of the times I have to learn to manage on my own.

I understand so well the hardship of accepting and dealing with needing extra help. Also dealing with people that do not understand. It is hard to train people to understand that the amount of help differs on different days and even during the same day. I found with my husband having a talk after I had taken a long nap. We discussed the best way for him to help. How I would like to help, and how I would like him to offer to help. We also talked about when I was short with him, it was not him I was mad at. Explaining that I was mad at the situation,, or I was tired very tired. I explained that the tiredness and brain fog made it very hard for me to think of a way to say things nicely.

I now live in a long-term facility. A few months ago they changed the floors around so I have new nurses who were not used to dealing with chronic care patients. They also had no idea about MS or what MS patients need. I had a situation where a nurse was trying to help . She was positioning a commode, I explained how it needed to be positioned, she did not understand. I tried to explain again then very quickly she was moving it this way and that way saying like this, like this, like this. I said no and tried to explain again. And again it was rapidfire questions. Finally I was so confused and upset with myself because I could not find the words that I needed. I put my head down and said NOOOO!!!!she got very upset and told me not to yell at her. She stopped with the rapidfire questions and I was able to explain what was happening. Now that nurse and I have a very good relation ship. Because we had that talk she now talked slowly to me and give me the time I need to think of a way of explaining what I need.

I also understand so well what it's like needing extra help. Going downhill losing a piece of yourself, never knowing when you'll lose the next.

I am losing the use of my arms from spasms. Most days I need to be fed at least one meal.
Because of optic nerve ritis I can no longer read books. I used to read about eight hours a day if not longer. It was how I got through the tough night. When the pain was so bad I could not sleep I would read and the night would pass a lot quicker. I now have books on tape, well computer. I listened to them and get enjoyment.
I was very upset for quite a while when this started to happen. I would stay in my room and not go out. I stopped visiting with friends going to group at the hospital. I isolated myself I do not know why I do this it is very self-destructive. In the last couple of weeks I have decided to make an effort. Getting dressed instead of staying in my pajamas. It is hard when you're so tired bone tired. That every movement hurts. I now am getting dressed even though it hurts and takes energy it does uplift my mood. So I guess it is worth it.

It is good that you started this group because only someone that is going through it and understand how it feels to find everything hard to do but still needing to do it. I have talked to my hubby about what he went through watching me be in so much pain. Watching me struggle every day. Now that I have been in the hospital 2.5 years we can talk more easily about what each of us went through.

Hugs to all