Chat Transcripts

Hi Rita...glad you could do this for us tonight.

I'm thrilled to be a part of this event

first off.........has anyone with MS or being a caregiver had to deal with any issues of violence or abuse from the person with MS?

No, though I've heard of it before. some people have mood problems from the disease I think

I just though I'd dive right in and ask as this question has gone unanswered for a long time.

Is that a situation you are in?

Is that what you are going through JP?

what about dementia or severe dementia ? And Yes it is!

Hi.. I'm late@!

His MRI's show nothing but lesions and black holes and a frontal lobe deformity, so I can only suspect that is where it derives from.

JP, have you discussed this with his doctor?

yes, all of them! And they are unable to give me anything definate, only that he has the rarest and fastest progressing type and is probably farther along in the progression than originally thought.
JP: plus he has several other "rare" symtoms having to do with MS.

You have a very difficult situation there. I'd like you to email me so I can get you in touch with some resources after the chat tonight. Will you do that?

He's 48 and diagnosed about 2and a half years ago.

what kind of "rare" symptoms?

Yes......I've been told he's an unusual case, and of course I'll e-mail you after; anything that would be of help!

Email me at admin@msfocus.org, and I'll get you in touch with our support staff.

He's developed seizures which is a rarity I'm told.

What else can we do to help you tonight, JP?

Ok, I got it.

Well, I was just wondering about the end stages of MS and if anyone can tell me about them or their own experiences they've observed as a caregiver.

Its probably mostly medical, but it is very frustrating living with MS and i imagine if you are getting worse quickly it must make you pretty angry

That's possible; but he dowsn't seem to realize he's doing it. His dementia is very severe and he is extreemly impulsive at times.

He's on an awful lot of medications.

Does anyone out there with MS get severeheadaches, this is his biggest suffering I think.

Yes! I get terrible headaches.

When I was first diagnosed, I used to have migraines

The doctor is trying me out on beta blockers

what do they give for them?

I started out on imitrex, but it made me loopy

I mean exactly. he was never a headache person before this.

I never was before my MS either

Me either

Well 2 years before dx I was getting migraines

They are awful! I just want to crawl in a hole

so...............does anything work for anyone?

Zomig every time

I found that when I reduced my stress level, I reduced my migraines

I know that is easier said then done......

Yeah! How? :-)

Zomig , I've not heard of that.

It is another migraine med

And honestly it has not failed me yet

You should ask about meds on the forums here. There is a pharmacist who is really great

I changed my career path....changed a few relationships in my life

Rita, I ordered your book from Amazon, but I haven't gotten it yet. Like you, it's people's stories that help me the most.

Thank you.....most of the women in my book are women that are around me all the time

Are you taking submissions for more stories? Will there be a follow up?

(I love to write)

Rita is y our book new?

Yes, through our web site, we take submissions all the time

I may have missed the beginning and can't get that part of the transcript to load

Cool

lifelines-stories.com

MS lifelines.... like the rebif company?

LifeLines is new, it was published in 2003

Don't I wish I was like Pfizer

lol

We all have dreams......

OHHH The name is just MS lifelines..... ok

Is the book all about ladies with MS or different chronic conditions

For what they charge for the ABCRs, they must live in a dream world!

There are 3 stories of women with MS (mine is one) and the other 10 women have different conditions

ok

I was diagnosed at 26 while I was in the middle of postpartum depression. I had to break down to ask for help.

Hey discussing $$ for the CRAB meds... on the Austraila MSF site... the serono folks say that rebif is like $13.00 per month

Maybe the socialized medicine..... wish it were like that herer\

Please! Sign me up!

My husband seems like he expects less of me now... like he is expecting the worst. I am newly dix

I was 33 when I was diagnosed. Single, professional and climbing every ladder there was....

My hubby expects more, as a way of denying there is anything wrong with me I think

Rita, how did you find your support?

I found it in my friends and my family.....when I was ready for it

I guess I feel like my friends aren't going to understand...

It took me a while.....I am extremely independent. So it took me longer to get ready to ask for help.

some of the stuff i go through is just so hard to explain

You first have to give them a chance to understand.

jp, are you still there?

I am

If you are...from a caregiver's perspective, were the symptoms he started outwith hard to understand?

moderator, it would be nicer if we could see who is in the room somehow. A lot of chatrooms have that.

I know. It is a limitation of this software. According to my user list, JP is still in the room, but I don't know if she may have stepped away from the keyboard.

In my experience, friends will either get closer, or fall away. You have to give it a try to find out who your real friends are

I had what I thought was a really close friend, but she just couldn't handle the fact that I got sick. Almost like it was taking away the focus from her.
scissorgrrrl: But then, other people, who I never really felt close to came through for me and understood.

Rita have you, or has anyone, tried a support group?

I have not been in a formal support group. I have led discussions with a local support group.

That actually sounds like more fun than joining! :-)

I tried one for a while, butthe one here wasn't for me

It is, but the questions are quite challenging when no one else feels like talking that day.

lol

I am also blessed with a close friend (fortunately and unfortunately) who has MS

There was no problem with people talking at the one here in denver!@ The problem was with shutting up to listen to anyone else

I have been involved with our local MS society... but I have found that the support group meetings are difficult... for there is usually one very needy person who monopolises the group and this is hard

When I was diagnosed, she was incredibly supportive of me and she was my support group.
scissorgrrrl: That is a blessing!

But... being involved with an association of folks with MS is very beneficial for me.. we have a lunch bunch once a months that is great

Her story is in my book. Her name is Sarah.

y2ok, how did you hook up with that group?

We all need to have people that speak the "same language" at times.

Yes! I know what yoy mean.

well it is just a portion of our local MS society group.

Yes I'mhere........realized I was bogarting the room is all......

There are billboards in our city that told me of the group

Sometimes we just need to relate and when you are newly diagnosed, you sometimes have to spend time educating people first and getting support second

true

that's hard to do though, when you are trying to educate yourself!

Hi, JP. Did you see my question?

I know....but you are the most important person to educate.

I had to make that distinction too.

I was so glad for the internet! If I hadn't found the ms orgs. I would have gone outta my head

just asking if I was still here.

what was it?

I was asking, from the caregivers perspective, how were you able to accept the more confusing symptoms? Like I worry about trying to explain fatigue and thinking issues to people.

For those just joining us, you can see a transcript of the chat so far by clicking the transcript button on the upper right. (Looks like a jar of ink with a feather pen)

I have pain and fatigue....those are my ongoing symptoms. I had a terrible time explaining those to people

Me? I've been a caregiver for other people for over 25 yrs, but this is my first family member and my first MS case.

are you a nurse?

I have terrible pain sometimes. I think that is actually the easiest and the hardest to explain. People understand what it is, so easy in that sense, but I always feel like they think I am complaining or exaggerating'

It's very difficult to explain what someone else is going through, especially when no to MS cases are the same; but I research ALOT on the net and belong to alot of groups and am my husbands sole caregiver so I can feel preety much what he goes through. You learn that after so many people.

As a newly dxed PPMSer.... I sometimes feel that folks are writing me off... expecting me to be fully disabled within a shot time.. and I am still blessed with complete mobility

You are great, JP. I wish all msers had such a dedicated caregiver!

Don't let 'em write you off! The first thing we learn about MS is that everybody is different, and that doctors CANNOT predict how the disease will go

I've worked in every part of the medical field there is but surgery, and went to seminars for that, but I was a Med Tech in a Medivac Unit in the Airand a CNA before and after that. All the way from hospice to the ER!Force

Cool!

I've even traveled cross country on one case.

Your husband is a lucky man.....

Medivac...you must have a high tolerance for blood and gore

After 30 yrs I guess he should be................lol

I get squeamish giving myself an injection!

Yes, yes, he should be.......lol

My mom would say, even a career criminal would be up for parole after 30!

JP:

Yes, Igot the worst ones in The Air Force and the ER. Been at it since I was 16 and I'm 49 now!

Wow. You have my respect!

I do all his meds 15 of them in different doses during the day, his straight caths and his blood sugars and whatever else comes along...

Rita Glaze:

JP, I think I found another book I need to write....

Oh?

As part of this LifeLines series, I will be writing spouse' stories later this year. i would be honored if you would consider....

Great idea! I'd love to hear JP's story.

Well...........he was used as a case study at Loma Linda where he was first diagnosed.

Well, everyone, our time for this evening has unfortunately run out. Rita, any final thoughts you'd like to share?

I would....thank you.

thank you Rita!

Rita Glaze:

We talk alot about support, but the most important lesson that I learned in the last two years is this....

And I as well; this has been an immense outlet!

My health is my #1 priority and that I need to surround myself with people that take that into consideration (at all levels)

Whether that is my career path, my romantic choices or in some cases, my friendships...

they all make us healthier...

Thank you for your time everyone and please take care!

Rita, can you give your website once more?

www.lifelines-stories.com

Katy:

Thank you Rita, and everyone for the advice!

That's exactly right, mustn't let anyone deprive you of the "quality" of life no matter what.........

Thanks Rita, and look out for my story!

:-)

I will be watching for it! :)

Good night, everybody!

Thank you, Rita and everyone for being here tonight!

I hope you will join our final event of the month next week...

That will be a teleconference with Carrie Bruce called Simplifying Your Life with Assistive Technology

For more information, call us at 888-MSFOCUS

thank you.. and can

thanks

Good night!

was.....................