time to talk

[ms.illini]

Hello, I am ms. illini and have been living with ALS for 4 years now. I live in the middle of a cornfield in Illinois. Very few people in my area know what ALS is ,so I don't have a lot of people talk with about this crazy ride. I have enjoyed reading the post and want to be a part of this community!

[liz]

Hi ms. illini -

I just got diagnosed a couple of weeks ago. Talking with folks here is really helping me deal with the initial shock and despair.

Four years........WOW. How are you doing out there? Who is helping you? Are you alone? With family? What kind of services are available to folks living in the middle of cornfields?

I live in a fairly populated area and there is nobody really to talk to about all of this ALS stuff here either. This forum is a real lifeline.

Liz

[ms.illini]

Liz, I am doing pretty good, can eat drink,and run my mouth just like always. Walking is gone (power chair), hands are starting to go and breathing is on the down slide. My mother takes care of me in the day and kyle(boyfriend) at night. Friends come and sit with me to give everyone a break. I go to a MDA clinic (about 2hours away) every 3 to 4 months. Pretty much diagnosed and sent on my way. Oh! I have 2 children (girl14,boy11) they just moved in with father,stepmom,and 2 little siblings, at the start of the school year. Thanks for replying ms. illini

[paula B]

Ms Illini im glad you found us. I am from wisconsin. Ya got any questions just ask and someone will have an answer for ya. This is a great group to be a part of.
Take care

Paula

[liz]

ms. illini -

Do you get to see your kids? How are they dealing with your situation?

Liz

[GinaD]

Hi Ms. Illini. I just found this forum a couple of nights ago and I already feel right at home and am just reading posts like crazee!! I know you will feel the same connection, it's so special to actually talk to people that know what you are going through. I hope you had a good day today and that you will have a restful night.

[Al]

Well not to be outdone. Hi there ms. illini. Welcome to our little forum. Sorry you are having to be here but glad you found us. AL.

[CindyM]

Hello ms. illini . I am sure you have guessed by now that this is the place to meet new friends and gather understanding. I just wanted to weigh in with a welcome, along with everyone else. Keep in touch.

[ms.illini]

Thanks everyone for the warm welcome! Liz asked about my kids. Yes I see them all time. My X set up a web cam. so we chat everyday. They come home every Sat. and leave Sunday night. They have handled this Als thing better than most adults that I know. We still do great quality thing together just a little slower and with modifications. They also have a great concept of "God only gives you what you can handle ,and that he has a bigger plan for us". We are not church going family but have strong faith. I guess my moto is make your time count and pick your battles. I don't have time or the energy to waste on negitve things.
Take Care everyone
P.S. Go Illini

[liz]

ms. illini -

It sounds like you have really come to terms with your circumstances and are making the most you can of your days. I admire your determination.

Liz

[Paty]

Just a warm welcome to the forum to Ms Illini and GinaD.

Love Paty (Baja California, Mexico), Husband's caregiver

[marlo]

Hello ms,
Welcome to the forum. I have found alot of help as well as comfort from everyone here. I don't do as much talking as i use. Mostly i just read other peoples posts.

We have also been having alot of health problems with other members of my family,, so my attention has been else where. But if you want to ask,, anything please feel free. I have ALS, also, for about 2 years.
Well you take care,, and keep up the great attitude. Cause thats the best thing you can do for yourself.

Love and Prayers
Marlo

[liz]

Hi Marlo -

Sounds like you've really had your hands full. Hope you get a chance every now and then to take care of yourself.

Liz

[marlo]

Thanks Liz,
I think we all need to do something for ourselves once in the while. But lately i haven't had that luxury. My oldest daughter just had exploritory surgery yesterday. I'm happy to say it went very well. So hopefully she,ll be doing better soon. Then a few weeks ago,, my brother got hurt at work. He fell off a ladder and split his head open, which threw he into, seizures. He is not doing very well. The specialists are now arguing over what they think is wrong with him. Meanwhile, his wife wasn't feeling very good , so they ran some tests. Only to discover that she has a virus in her thyroid ,, so she has to have it out,, pretty soon. As if that werent' enough,,
All of my Son's and part of my "Identity" was stolen about a month ago. He's in the service, and was being transferred from Japan to South Carolina. When the shipments of his stuff started arriving,, someone broke in. They grabbed a bag,, thinking it was a laptop ,, and unfortunately,, it had all our papers in it ,, for shipping. Anyway,, thats why i have been alittle distracted from the forum. All the stress,, causes,, some bad days.

Anyway,, it is,,, in Gods hands,, so i'm sure it'll be alright. I pray ,, you all have a good day tomorrow.

Love and Prayers
Marlo

[Al]

Hi Marlo. I hope things turn the other way for you soon. Just keep telling yourself tomorrow is another day and it'll get better. It's not easy especially when you have as many things going on as you do but with your faith you will get through it. AL.

[CindyM]

Hi Marlo. I am sorry for all your troubles. Hope you can find a moment's peace while all this id going on and I hope things improve soon for your loved ones!

[ellisa]

Hi Marlo,
Sorry about your misfortunes, but have faith things will get better for your family and yourself.

Ellisa

[marlo]

Hi Marlo. I hope things turn the other way for you soon. Just keep telling yourself tomorrow is another day and it'll get better. It's not easy especially when you have as many things going on as you do but with your faith you will get through it. AL.

Hi Al,
Thanks for the encouraging words. For some reason,, my family is being hit real hard this year with health problems. My brother is still under going more tests,, due to his fall. He passes out everytime he looks up or looks to the right. The doctors are now talking about giving him an EMG test. Do you know if that test is used for diagnosing other things besides ALS, and carpultunnel ? Wouldn't that be something for him and myself to have this disease.? My sister just called today ,, to say,, that they took her husband into the hospital,, this morning. I'm not sure what all they found out yet. But he is schedule for surgery Dec. 1 st. I think their leaning toward kidney stones or something like that. This string of bad luck can't last forever.

Well you all take care,, and have a great Thanksgiving.

Love and Prayers
Marlo

[Al]

Hi Marlo. Sounds like they are looking for a compressed disc or pinched nerve. A muscle could be pinching the nerve. Passing out is not one of the generally known symptoms of ALS. Now some might pass out when they get the diagnosis but not by looking up. AL.

[liz]

ms. illini -

What's on for Thanksgiving with you and your folks?

Liz

[marlo]

Hi Marlo. Sounds like they are looking for a compressed disc or pinched nerve. A muscle could be pinching the nerve. Passing out is not one of the generally known symptoms of ALS. Now some might pass out when they get the diagnosis but not by looking up. AL.

Thanks Al, I'll let ya know what the doctors find out about my brother. Just in case they do come up with a new symptom in some people for this disease. Hope your Thanksgiving was good.

Marlo

[MtPockets]

Hi Marlo,
I hope they find out what is causing this and it's not related to ALS.
Years ago I had a symptom that no doctor could figure out. If I coughed, I'd pass out. They put me in the hospital and the doctors were showing me to all the Interns because they could not figure it out. The neurologist came in and said you cannot be passing out when you cough. Here stand on the side of the bed and cough for me, bang, down I went like I had been shot. He thought I was faking so he did the rub your sternum real hard to cause pain "test" and I did not move. So then he begain to scream at the nurses and me, quick get a crash cart.
I had told him I always am out for about 2 minutes when it happens, and did not breath, or anything. When I came to I said, see what I mean? He turned around left the room and never came back.
They never did figure out what caused it, but named it cough syncopahny, or something like that. Anyway it went away on it's own over time????

God Bless
Capt. AL

[ms.illini]

ms. illini -

What's on for Thanksgiving with you and your folks?

Liz
We have days and days of family ,friends eats and drinks!!! Started Tus. night last until Sunday! What up with You?

[liz]

ms. illini -

We had a dinner here at our house yesterday with some of my husband's family and we'll have another at his sister's on Saturday for the rest who couldn't make Thursday plus the whole Thursday crowd again because we love a good party. Today I actually partook of some of the Black Friday shopping action so now I'm limping and wishing I had better sense. :-D Enjoy the rest of your holiday!

Liz

[CindyM]

Hi Liz-how are the legs doing this morning? Are you back at work? Hope you are all rested up! Regards, Cindy

[liz]

Hi Cindy -

Yep, I'm back to work. The legs are just a bit stiff. I'm going to have to pace myself through the holidays. I hate to make concessions but I guess I'd better get used to it.

Got myself into a bit of a funk at a family dinner on Saturday. All the holiday cheer was a bit much for me that day. I couldn't stop thinking about more difficult days to come and then me being gone. Felt very jealous of those who will get to be with my kids as they grow up. :cry: Not one of my better days - I guess we're entitled to a few of these.

Liz

[Al]

Hey Liz if we didn't have a pity party once in a while we wouldn't be human. Right? There are good days and bad days. As long as there are more good than bad then we are still winning. Have a good one today. AL.

[liz]

Thanks Al -

That felt like a hug.

Liz

[marlo]

Hi Marlo,
I hope they find out what is causing this and it's not related to ALS.
Years ago I had a symptom that no doctor could figure out. If I coughed, I'd pass out. They put me in the hospital and the doctors were showing me to all the Interns because they could not figure it out. The neurologist came in and said you cannot be passing out when you cough. Here stand on the side of the bed and cough for me, bang, down I went like I had been shot. He thought I was faking so he did the rub your sternum real hard to cause pain "test" and I did not move. So then he begain to scream at the nurses and me, quick get a crash cart.
I had told him I always am out for about 2 minutes when it happens, and did not breath, or anything. When I came to I said, see what I mean? He turned around left the room and never came back.
They never did figure out what caused it, but named it cough syncopahny, or something like that. Anyway it went away on it's own over time????

God Bless
Capt. AL

Thanks MTPockets,

That just sounds so weird, how they just let ya go home,, without figuring out anything. I'm glad it finally went away on it's own,, but sure does make ya wonder what caused it,, huh? God forbid you have to cough while crossing a busy street or something. Or turn your head to look for cars. We are waiting on the MRI results, so i am hopeful that they will give the doctors some better insight as to what his problem is. And i too am hoping it has nothig to do with ALS. One of us in the family with it is,, quite enough.
Take care,, and have a good day.

Love and Prayers
Marlo

[Al]

It was Liz. More today if you need them. AL.

[MtPockets]

Hi Marlo,
Yes it was real fun when I went driving with my grandkids and had to have them catch the wheel if I coughed and passed out. Only happened a couple of times but still scary. It lasted about a year and just as soon as it showed up it left. The total amount of times over that year that I passed out must have been close to 300 times. Really weird, but then I'm a weird guy, what can I say, just ask AL.

About the only thing I do now when I cough is sometimes pee on myself. HAHA.:-D:-D

God Bless
Capt. AL

[CindyM]

Hey Liz- I asked about your holiday and then the day got away from me so I just saw your post. It makes me sad, too, to think someone else will watch your kids grow up. Give them all an extra hug, will you? One each from me!

[Nita]

My mum :confused:

--------------------------------------------------------------------------------

What can i say my mums been having symptoms of mnd 4 over a year now she chokes on everything her weight has plumitted to a mere 8 stone she was diagnosed in june with mnd she seems happy enough but cant sleep or eat fasten her coat carry her bag everything is a struggle the doctors say dont try to explain the ilness to her why go with feeding tubes and masks only to prolong the illness has she much time left.
I love my mum what do i do ive never cried so much in my life shes just so brave shes only 64

[Al]

Hi Nita sorry to bother you at such a trying time but if you could just post the same message once it will be easier for you to find replies without trying to remember where you put them all. I promise you people will find your message and respond. AL.

[liz]

Hi Cindy -

Thanks for the moral support. I know I really need to focus on the present and enjoy the time I have now, especially while I'm still relatively well. It would be a waste to spend this time dwelling on the future. I think I learned that I'll need to be better emotionally prepared for the next big gathering (Christmas Eve) so I can handle myself better. I really want to enjoy these occassions as these are the ones that create such special memories for all of us.

My first ALS Clinic appointment is tomorrow - hopefully we'll come away with some kind of encouragement. I spent all yesterday under the weather with a stomach virus and all I could think was "I hope I don't drop too much weight or they're going to want to PEG me." :) Actually, I feel very prepared for this appointment because of all the info I've picked up on this site. I can't imagine how I would be coping without all of this support.


Thanks to all.......

Liz

[CindyM]

I agree. Some of my friends and family advise me to stay off the internet until I get a definate DX but I have found that when I am informed I am a better patient and can communicate with the Docs so much better. Plus staying informed helps me deal with things. I thought of you this morning as I was dragging myself out of bed. At least I only have myself to look after. I still don't know how you do it and any time you need to vent I know you know we are here for you!

[liz]

Cindy -

Gracias, amiga. We've developed a very cozy Friday night routine - out to dinner then to Blockbuster then home to snuggle up an watch DVDs. I figure this drill can last me through walker and wheelchair.

Liz

[MtPockets]

Does anyone know some group or whatever that will come into your home and look at everything and tell you how to make changes to make things work better, like the shower, etc. I mean changing the whole desiogn of a room.

I love the design of the roll in shower that AL has, but was wondering who could look at a room and give me ideas. I'm not talented in the area of imagination when it comes to looking at a bathroom and seeing possibilities, all I see are problems.

Thanks for the help,
God Bless
Capt AL

[Al]

Have you asked your OT or PT about it Capt. AL. They might have ideas or know contractors that do reno's. I've got a couple of sites that sell bathroom stuff like tubs and things if you want them. AL.

[CindyM]

Hey MT. Here in Massachusetts we have Independant Living Centers. I think they do advise on how to amend living spaces. I'm not sure if they make home visits. I could ask if they have a counterpart in your state if you like...

[MtPockets]

If you don't mind please ask them for me. Seems like since the hurricane Katrina there is very little available in the way of services around here.

God Bless,
Capt. AL

[ellisa]

Mt.Pockets,

I remember hearing something on the news about a month ago about a group helping people who need advice or even help with rebuilding or remodeling houses to make them handicap assessable since Katrina. If my memory serves me correctly I believe it was a group associated with Tulane Hospital I believe they were OT's. I will try to do a little research and get back with you on it.

Ellisa

[MtPockets]

Thanks so much for checking for me. As most of you we are on a fixed income and any major renovations to our house such as a bathroom remodel, we just don't have the means to do the work.
Maybe since we are in the Katrina area someone knows someone who would help with this.

Thanks Again,
God Bless
Capt. AL

[CindyM]

Hi MT. I just saw where you asked me to go ahead and look something up for you. I'll get right on it. Expect a private message soon! Regards, Cindy

[ellisa]

Mt. Pockets,
I have been doing a little research to try and find some type of info about people or places that are helping people with disabilities after Katrina and came upon this web site:
www.lifeofms.com (http://www.lifeofms.com)

You may already have knowledge of this site because it is located in Mississippi, but if not it has information and a link about Katrina victims with disabilities needing assistance. If I come across or here of any more information I will pass it own. Believe me I know how it is living in the world of after Katrina, it is not easy, certainly with getting adequate medical care. Hope this helps. :)


God Bless

Ellisa

[MtPockets]

Thanks so much for the info Ellisa. I just got off the phone with them and they have an office in Biloxi, so contacted them, and they will try to get me the help I need.
Thanks so much. I had no idea they was any such group.

God Bless
Capt. AL

[Raymond B]

Hi,

I brought in a physical therapist from a local rehab center. She eas very helpful in pointing out all of the potentially problem areas, and came up with some good recommendations.

Good Luck,

Raymond B