time to talk

[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

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

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]

Have been looking

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

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