Where has everyone gone?

[pennstater]

Hope things resolve for you Think! I can only imagine how frustrating that must be. Good to see a post from you.

Likewise Kimba - glad to see a post from you!

[Seasha]

Good to see you, Think! Have been missing you. Hope that chair arrives soon enough and you get exactly what you asked for.

Red tape is red tape, no matter where you live. I've been going through that getting my scooter repaired. Waiting 3 months now.

Let us know when it arrives and take care!

[REG53]

Hello Thinkimjob, I can certainly can relate about the ins. com's. I remember one time I finally broke down and cried. So frustrating.

I hope you don't have to wait much longer on your lift chair.

[KoKo]

Still here. Waging a six month battle with the NDIS - (Australia’s National Disability Insurance Scheme). It is a bureaucratic nightmare.

I had a recliner/lift chair approved in April. PT and GP said I needed it. Rollator, scooter, saggy lounge and exciting falls have wrecked my back and shoulders. It’s been complete screw-up. I’d have bought the bloody thing myself except they assured me it was on its way.
Phone calls, emails, texts waiting, waiting, waiting.

Hello Thinkimjob

Thanks for checking in with us!

Sorry that you have to go through so much stress and frustration trying to get your lift recliner. What a pain!

I couldn't do without my recliner for very long, as I use it for sleeping.

Hopefully you get yours soon.

And also hope you are able to check in more often, to let us know how you are doing. Always like hearing from you, Thinkimjob

Take Care

[Thinkimjob]

Still here. Waging a six month battle with the NDIS - (Australia’s National Disability Insurance Scheme). It is a bureaucratic nightmare.
Yes, I’m approved, and yay they pay for a cleaner. There’s a plan manager ($1500 p.a.), a plan reviewer ($1500), an OT assessor ($2000 a trip) and on and on and on.
I had a recliner/lift chair approved in April. PT and GP said I needed it. Rollator, scooter, saggy lounge and exciting falls have wrecked my back and shoulders. It’s been complete screw-up. I’d have bought the bloody thing myself except they assured me it was on its way.
Phone calls, emails, texts waiting, waiting, waiting.
Yes, I am pleased about the free cleaner.
The plan people treat you like you’re an idiot, and know nothing about MS.
They’re obsessed with “community involvement”. Would I like to go out more? Do I need a social worker to take me to the supermarket? NO, I need a bloody lift chair.
So, that’s me. Sitting on a saggy couch, trying to be polite to people who are driving me nuts.
Could be worse.
Love to all. 💕

[Kimba22]

Yes; Kimba. It's good to hear from you again!

Thanks, Mamabug!

[Mamabug]

Yes; Kimba. It's good to hear from you again!

[Kimba22]

OMGoodness Kimba you certainly have had some setbacks.

I hope you are starting to feel much better.

Thanks, REG53 ❤

[REG53]

OMGoodness Kimba you certainly have had some setbacks.

I hope you are starting to feel much better.

[Kimba22]

It's good to hear from you, Kimba, as we have missed you!
Sorry that you've had some hard times and hope things are looking up for you.
Looking forward to hearing more from you

Thankyou Seasha ❤
Have missed you too!

[Kimba22]

Hello Kim

It is so great to hear from you!

I often wonder how you have been doing, and miss seeing your thoughtful input on the message boards. Miss you as moderator and active member!

Sorry to learn about the setbacks and recent challenges that you have been dealing with. Hopefully you get a reprieve, and have better days.

Looking forward to having you around here more often!

Take Care

Thankyou KoKo,
Have missed you too! ❤

[Seasha]

It's good to hear from you, Kimba, as we have missed you!
Sorry that you've had some hard times and hope things are looking up for you.
Looking forward to hearing more from you

[KoKo]

I haven't been around for some time. Unfortunately have had more setbacks with my MS. Just a few challenges this past year include infections, high fevers (not good when you are heat intolerant), and a broken hip from when I fell off my shower chair. I hope to be back more often.

Hello Kim

It is so great to hear from you!

I often wonder how you have been doing, and miss seeing your thoughtful input on the message boards. Miss you as moderator and active member!

Sorry to learn about the setbacks and recent challenges that you have been dealing with. Hopefully you get a reprieve, and have better days.

Looking forward to having you around here more often!

Take Care

[Kimba22]

I haven't been around for some time. Unfortunately have had more setbacks with my MS. Just a few challenges this past year include infections, high fevers (not good when you are heat intolerant), and a broken hip from when I fell off my shower chair. I hope to be back more often.

They were also intimidated by reading more progressive stories on any site, as it represents their fears

I had a MS nurse who once told me she discouraged patients from visiting MS forums for this reason. She also mentioned that information provided on these sites wasn't always accurate.

All things considered, I've found MSWorld empowering. I feel better knowing others "get it" and have been able to become a better advocate for myself from the knowledge shared on this site. This site is also recommended by the NMSS, which is how I found about it. So that's also something that I feel good about.

My responses require contemplation... even the decision to post at all

So do mine plus I'm not quick to get my words into writing anymore. Finding the right words can be a struggle and takes me forever to type.

I don't visit the chatroom anymore, but found it helpful when I wanted to connect with a 'live' person. It was usually the busiest in the evenings.

But meeting MSWorld friends in person is incredible !

Yes, it is!

I've had the opportunity to meet two people from the chatroom. Came close (literally within a mile) to meeting someone else from a different state from the message boards. Unfortunately timing didn't work out as we needed to get to another destination.

One was Alan Mandel, our CEO. He invited me to attend a patient advocate seminar with him in Kansas City about three years ago.

So sad to learn he is no longer with us. He will most definitely be missed. https://www.msworld.org/forum/showth...del-has-passed

maybe there were fewer replies so there was less to post

I found that to be the case when I was a moderator.

I believe more people read than post but you are right, usage is down from where it was. It's difficult to know why exactly but people have many more options these days, it seems.

Agree.

When I win the lottery, I'd love to arrange travel and a banquet for everyone using this site so we could meet one another. Now that would be fun!

Sounds great! Hope you hit it big soon.

[TaoWarrior]

How refreshing! I am curious if you grapple with fatigue? I could work with a ton of other crummy MS quirks but my fatigue is totally what did me in.

Lord yes it's my most persistent symptom.

I take B12 1000mg 1-2 times a day, take 150MG armodafinil (nuvigil) once a day and drink a sinful amount of caffeine. Most days that is enough, some days not so much. Since I am on the road all day I can frequently find time to take a catnap on those days and that gets me until I get home and can just lay on the couch until it is late enough for bed time.

On Sundays I only drink caffeine and less than every other day to let my body recuperate, as a result I'm barely coherent most Sundays and I never accomplish what I hope to. I've thought about adding Sundays back in to the whole stimulant regime but one of the big lessons I've learned from you guys here is to listen to your body. Since 6 days a week I tell my body to shut up I figure the 7th I should at least try. Besides even God needed one day off a week.