[PegMeerkatz]

There was an MS conference today in Manhattan, I really wanted to go though there was NO WAY I was driving to Manhattan & with my wheelchair in for repair I COULD NOT take public transportation. Mom USE TO work in Manhattan & drove there 5 days a week for OVER 5 YEARS, granted she was a lot younger then but she agreed to drive me to Manhattan.

The parking lot I had been told about on the phone when I registered was CLOSED ON SUNDAY; why did they say we could park there? I stopped a police car passing us & asked him. We were near a hospital & most of the street was RESERVED for doctors but the police officer said because my mother had handicapped license plates she COULD park there. OK we had CLOSE PARKING.

I attended a function by the MSF some time ago & it was in a restaurant. There was a buffet, the buffet was in a "sunken" middle part of the room down several steps, many people could not personally go to the buffet because of this. Today we had to walk through one long hallway after another, up a pretty steep hill; the walk was horrendous; one woman was in tears when she finally reached the conference room.

Well this WAS NOT my point just VENTING, the point is that the conference was largely about the benefits of PT. I have started & stopped PT many times mainly because MOST PT's DO NOT understand MS or they here "progressive" set you on a routine then each time you come in say "go do it" & ignore you. I have not been to PT in a while. The other problem I have is I require multiple therapies; PT, OT, speech & swallowing, cognition...

The people that spoke today were from a Rehab Center & offered all these services & more under one roof. This was one of the first Rehab programs I was really impressed with. The PROBLEM is that it is in MANHATTAN & I am in LONG ISLAND. Able ride WILL NOT transport to Manhattan from Long Island. But in speaking with someone from the team today MEDICAID MIGHT pay TRANSPORTATION & 100% of my treatment would be covered by INSURANCE. I spoke to the Speech therapist during lunch break & she told me I could also take Able ride to an LIRR Station & go to Penn Station they are less than 1 block from Penn Station. I was still in the "thinking" stages when we left the conference which was from 9 am to 3:30 pm. The ride home was OVER 1 hour & with mom as my chauffeur I COULD NOT escape.

I swear she remembers 90% of what was said verbatium. I was a captive audience (not by choice) as for this entire long trip she told me all the ways I could improve my life & things she EXPECTS ME TO DO.

I told her I would look into this program (my neurologist would have to be on board & I would have to figure transportation). Well mom already has it in place that someone is replacing the floor in my room now she tells me BEFORE the carpet is ripped up I either have to have a "plan" in place with this Rehab Center OR be set up for PT locally. Huh?

It gets better, in my condo we are considered the 1st floor even though you need to take the elevator UPSTAIRS to go to the mailroom, consierge's desk, etc. She said starting tomorrow she DOES NOT want my PCA to get the mail I HAVE TO GET IT. Now she is HIGHLY MOTIVATED to get me moving. The thing is I AM NOT highly motivated. During "questions" with one of the speakers mom told the speaker my lack of motivation was from DEPRESSION & the doctor told her that 90% of MS Patients with depression can DECREASE their depression by exercising. I lost count of how many times she has quoted this to me since we left the conference.

I THINK my neurologist will be on board & if transportation can be arranged that is another hurdle & this is the 1st program I have ever been impressed with in my 25 + years with MS but I am still a bit well I don't know...

UNMOTIVATED...

APPREHENSIVE...

I DON'T KNOW...

[Dejibo]

I still say you qualify for your very own apartment thru disabled housing, and should apply at the first chance. I dont think your mom is trying to be mean, I think she just wants to see you feel better, and be more active in hopes that your mood will improve.

Hang in there.

[TRESA]

I agree with dejbo - It sounds like your mother is trying to help you improve your health and life but it also sounds darn stressful to me.

Please check into services where you might qualify for getting a home of your own.

Motivation is a difficult worm and even with years as an athlete I could not muster up the motivation to keep going to PT after 4 weeks.

However, excercise will benefit you immensely with the fatigue and depression. So I hope someone can help you get to PT and back home.

I had to get a dog - and it has been a miraculous adventure for me.

Let us know what your state agencies say about you getting your own home.

[Erin524]

Peg, I'd really like to read what you wrote, but I cant get past the first few sentences because the font you've chosen is a bit...overpowering to my MS eyes. (I'm having a bad vision week)


Can you possibly use the forum's default font (or another font that's not so bold) so that it's easier to read?? Arial Bold/Black is just too strong a font for MS eyeballs to read sometimes.

I'm not trying to be mean or anything, it's just sometimes for people with MS, cognitive and vision problems can make it difficult for people to read some font types and font colors.

[SallyC]

Erin, I have my pc set on my own font in it's own size. Just go to you tools then options, then accessibility and Hit the 2 buttons that says "ignore all fonts and sizes then go to fonts and set you own fonts and sizes.

That way, no matter what website or person typing will not change the font or size you've set

[lefthanded]

Motivation is tricky, especially if you are like many of us, resistant to what feels like nagging and control. It might help if you set up a chart or schedule to do all those things you know you need to do, to demonstrate to your mother that you have a good grasp of what is needed.

Next, I would outline your own plan on how to obtain the services you need in a way that allows you the most independence from needing the assistance of your mom or anyone else. Of course there will be gaps in this, but by doing this you can demonstrate where the greatest difficulties lie.

Next I would merge these two into one list and prioritize it. I might (because I am an artist and use color) color code those tasks and activities you can do on your own, those you need help with, and those that you find impossibly challenging. Then I would sit down with your mother and go over the list and pick those things you are comfortable receiving her help with. I would also set some boundaries, to let her know that you respect her wishes, and expect her to respect yours. For example, if you want your PCA's help with tasks that make your life less stressful right now, those become less negotiable than say tasks you can more readily take on sooner.


I can only say I understand your frustration to a degree. My therapist wants me to write down every single thing I do all day . . . on my way to creating a daily regime or schedule to create more regularity in my days. I found this to be so stressful I was "hiding" my day planner and skipping this entirely, finding especially on good days it interfered with my concentration and activity. I will, however, have to create and adapt my own technique for getting my life on a little more regular schedule if I am ever going to work toward my goal of regaining some feeling of productivity.

[TRESA]

Originally Posted by SallyC

Erin, I have my pc set on my own font in it's own size. Just go to you tools then options, then accessibility and Hit the 2 buttons that says "ignore all fonts and sizes then go to fonts and set you own fonts and sizes.

That way, no matter what website or person typing will not change the font or size you've set

HAHAHAHAHHAHAH - Where you just talking english???? I cant process one word you just wrote and I cant stop laughing about it!!

[SallyC]

Originally Posted by TRESA

HAHAHAHAHHAHAH - Where you just talking english???? I cant process one word you just wrote and I cant stop laughing about it!!

I have Internet Explorer 8 and that's how I do it. What don't you understand..lol

[PegMeerkatz]

Originally Posted by lefthanded

Motivation is tricky, especially if you are like many of us, resistant to what feels like nagging and control. It might help if you set up a chart or schedule to do all those things you know you need to do, to demonstrate to your mother that you have a good grasp of what is needed.

Originally Posted by lefthanded

Next, I would outline your own plan on how to obtain the services you need in a way that allows you the most independence from needing the assistance of your mom or anyone else. Of course there will be gaps in this, but by doing this you can demonstrate where the greatest difficulties lie.

Next I would merge these two into one list and prioritize it. I might (because I am an artist and use color) color code those tasks and activities you can do on your own, those you need help with, and those that you find impossibly challenging. Then I would sit down with your mother and go over the list and pick those things you are comfortable receiving her help with. I would also set some boundaries, to let her know that you respect her wishes, and expect her to respect yours. For example, if you want your PCA's help with tasks that make your life less stressful right now, those become less negotiable than say tasks you can more readily take on sooner.


I can only say I understand your frustration to a degree. My therapist wants me to write down every single thing I do all day . . . on my way to creating a daily regime or schedule to create more regularity in my days. I found this to be so stressful I was "hiding" my day planner and skipping this entirely, finding especially on good days it interfered with my concentration and activity. I will, however, have to create and adapt my own technique for getting my life on a little more regular schedule if I am ever going to work toward my goal of regaining some feeling of productivity.

Reposting in a different font (at the end of this message).

Lefthanded I LOVED YOUR RESPONSE. I am going to try some of your suggestions they really sound like they will work. Deep down I know mom is ONLY TRYING TO HELP but sometimes it seems like nagging. I THINK what the "problem" is, is that I KNOW that so much of what she says is TRUE but I just can't get this old fat lazy butt moving. Have to keep trying - one foot in front in front of the other & as my 12 step program teaches "act as if" "bring the body & the mind will follow"

If you're an underdog, mentally disabled, physically disabled, if you don't fit in, if you're not as pretty as the others, you can still be a hero.
-- Steve Guttenberg

There was an MS conference today in Manhattan, I really wanted to go though there was NO WAY I was driving to Manhattan & with my wheelchair in for repair I COULD NOT take public transportation. Mom USE TO work in Manhattan & drove there 5 days a week for OVER 5 YEARS, granted she was a lot younger then but she agreed to drive me to Manhattan.

The parking lot I had been told about on the phone when I registered was CLOSED ON SUNDAY; why did they say we could park there? I stopped a police car passing us & asked him. We were near a hospital & most of the street was RESERVED for doctors but the police officer said because my mother had handicapped license plates she COULD park there. OK we had CLOSE PARKING.

I attended a function by the MSF some time ago & it was in a restaurant. There was a buffet, the buffet was in a "sunken" middle part of the room down several steps, many people could not personally go to the buffet because of this. Today we had to walk through one long hallway after another, up a pretty steep hill; the walk was horrendous; one woman was in tears when she finally reached the conference room.

Well this WAS NOT my point just VENTING, the point is that the conference was largely about the benefits of PT. I have started & stopped PT many times mainly because MOST PT's DO NOT understand MS or they here "progressive" set you on a routine then each time you come in say "go do it" & ignore you. I have not been to PT in a while. The other problem I have is I require multiple therapies; PT, OT, speech & swallowing, cognition...

The people that spoke today were from a Rehab Center & offered all these services & more under one roof. This was one of the first Rehab programs I was really impressed with. The PROBLEM is that it is in MANHATTAN & I am in LONG ISLAND. Able ride WILL NOT transport to Manhattan from Long Island. But in speaking with someone from the team today MEDICAID MIGHT pay TRANSPORTATION & 100% of my treatment would be covered by INSURANCE. I spoke to the Speech therapist during lunch break & she told me I could also take Able ride to an LIRR Station & go to Penn Station they are less than 1 block from Penn Station. I was still in the "thinking" stages when we left the conference which was from 9 am to 3:30 pm. The ride home was OVER 1 hour & with mom as my chauffeur I COULD NOT escape.

I swear she remembers 90% of what was said verbatium. I was a captive audience (not by choice) as for this entire long trip she told me all the ways I could improve my life & things she EXPECTS ME TO DO.

I told her I would look into this program (my neurologist would have to be on board & I would have to figure transportation). Well mom already has it in place that someone is replacing the floor in my room now she tells me BEFORE the carpet is ripped up I either have to have a "plan" in place with this Rehab Center OR be set up for PT locally. Huh?

It gets better, in my condo we are considered the 1st floor even though you need to take the elevator UPSTAIRS to go to the mailroom, consierge's desk, etc. She said starting tomorrow she DOES NOT want my PCA to get the mail I HAVE TO GET IT. Now she is HIGHLY MOTIVATED to get me moving. The thing is I AM NOT highly motivated. During "questions" with one of the speakers mom told the speaker my lack of motivation was from DEPRESSION & the doctor told her that 90% of MS Patients with depression can DECREASE their depression by exercising. I lost count of how many times she has quoted this to me since we left the conference.

I THINK my neurologist will be on board & if transportation can be arranged that is another hurdle & this is the 1st program I have ever been impressed with in my 25 + years with MS but I am still a bit well I don't know...

UNMOTIVATED...

APPREHENSIVE...

I DON'T KNOW...