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Why I've been 'absent' since Mid-October... LONG

Posted by mjsee Zone 7b, NC (My Page) on
Tue, Dec 5, 06 at 10:13

Some of you may remember that I had a trip to Europe scheduled for mid-October. Four days in Barcelona, two days in Avignon, and four days in Parisfly home from Paris. I was traveling with my good friend, Paige, who has four kids, two with Friedereichs Ataxia.

The trip started off finedespite a minor airport delay that had us worried we would miss our connection in Newark to Barcelona. We made our international flight, and arrived at about 10:00 AM Barcelona time. It was a beautiful daywe took the train into the city, and then switched to the metro and found our hotel. Checked in, and then went and did a little sight-seeing. Managed to keep ourselves awake until 10:00 PM local time, and then went to bed. The next day started off promisingwe were having a wonderful timeuntil lunch when I pulled out my cellphone to check the time. That was when we got "The Message." DH had texted my phone"Paige needs to call home." Well, that didnt sound good. Paige called homeno answer. Paige tried her husband at workno answer. Paige tried her husbands cell phoneno answer. We called MY husbandand he told us that Paiges 21 year-old son was in the hospital. Hed had a stroke. That was the end of our vacationand the beginning of our saga home. Luckily, because of the 6 hour time difference, our travel agency was able to get us on the first flight out of Barcelona the next morning. Paige finally got hold of her husband(his cell phone had died and he didn't know it--DH tracked him down at the hospital and had him call my cell phone) and let him know we were coming home as fast as we couldand that was that. We were home by 7:30 PM US time the next day.

Since then, Ive been acting as a support system for Paige and her familywhich is why Ive not had time (or energy) to "visit."

Thomas has had to leave college and probably wont be going back. His intellect is intact, but he has some aphasia, his speech is compromised, and his vision is compromised. We are hoping all will improve, but its unlikely that hell be able to return to school. He was 1.5 semesters from graduatingthe whole thing is just heart-breaking. He's home from the hospital now--the family gets 35 hours of custodial care, but Thomas can't be left alone. His parents are taking it in shifts. Thomas is slowly regaining his speech--I hope he'll regain more muscle control and all of his eyesight. He was an art major in college...the visual loss has been devastating for him.

Why am I sharing all this? Well, for one, I didnt want you to think Id just abandoned yall. For another, I may need some "internet help." There are folks on this board with expertise Id like to tap intoto help this family make their home "work" now that they are in it ALL the time. Are yall up for it?

melanie


Follow-Up Postings:

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RE: Why I've been 'absent' since Mid-October... LONG

Oh dear, I'm sorry to hear about your friend's troubles. What sort of help are they looking for? I've got a pretty "wired" house and may be able to offer suggestions.


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 13:06

Tandaina--

They want to re-purpose their dining room into an office/computer area. The thought is to add some counter space (Which would allow a wheel chair to access it) and provide more storage. Mostly--this house is VERY dark. What I'm really looking for is what type of professional I should go begging to... I want to make this house feel more comfy for the family. They've already modified the bathroom and added an additional entrance...(prior to the stroke) and then they ran out of money. The lighting is typical 1960's...bad ceiling fixtures. Cave-like. They've been supplementing with lamps in the other rooms, but the DR is hopeless.

I figure it's time for my community to give back--Paige has run two girl scout troops for at leas 15 years, not to mention the Children's choir at church...and all the FARA benefits she's put together...she's just one of those people who give constantly, and never ask for help for themselves. She may not ask for help, but I will!

I know we need pro help--just not certain WHOM to talk to. Nor am I certain what "order of operations" to follow. Paige has a pretty good feel for what sort of counter/cabinet configuration she wants. She's happy using good qualikty, but not high-end materials (becuase if they ever have to sell they'll have to rip it all out)--but I think new/better lighting would make a world of difference. Do we put in the cabinetry counters and THEN do the lights?

I am just SO confused. I know an architect...don't know if he'd help or not. Or maybe a kitchen designer would be a good choice?

Guidance please!

melanie


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RE: Why I've been 'absent' since Mid-October... LONG

Well first off. A DARK room is GOOD for computers. There's a reason we computer nerds are often called "vampires". ;) Glare is a pain the behind with computers. Dark isn't always bad, it can be cozy and reassuring when matched with the right paint and mindset.

House stuff I'm not so great with. Computers I know.

I'd suggest a trip to a local office store. Most of them have computer desks setup. Wheel on up and see what desks will fit and be comfy for someone in a wheel chair. My current desk would probably be perfect. Its a "corner" desk. Lots of surface area, supports underneath set BACK away from the front, etc. Look for a desk that does NOT have a closed computer area. Computers need to breath just like people. Close them away in a little box and they'll cook.

Take into consideration where the MONITOR will sit. Most desks will put this too high for someone in a wheel chair! Also, a good keyboard/mouse tray will probably be required. Keep that in mind. You may need to modify something that is "close" or have a piece custom built if you really want things setup properly.

Also, you said this kid is an artist. OK well computers can help there too. Have them look into Wacom tablets that will let him draw directly into the computer. A good quality wide screen LCD monitor can be had for under $300 and will give him enough screen space to really zoom in on his work. Computers are good for helping those with reduced vision. If he's been at all active in the web comic community he may find an artist willing to give him an old tablet or sell him one at a really reduced price. Never hurts to ask.

And iPod might not be a bad idea either. It gives him quick mobile access to music (what college aged guy doesn't like that?).

For updating the house your best off calling around to local contractors. They can give you an idea of what can be done and for how much. However, in my experience, unless said contractor has a personal relationship with the family there won't be any "give" involved.


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RE: Why I've been 'absent' since Mid-October... LONG

Melanie, I know here we have several avenues to request help in modifying a home the local Home Builder Association will assist those with monetary needs and make modifications to the house for free through donated product and it is often featured as part of the Parade of Homes (used to show off what's available to assist those that have disabilities); Local TV/radio stations often sponsor a family in need of assistance by getting the word out; Our local paper this time of year puts announcements in the paper without naming the recipient to work through the United Way to match needs; Habitat for Humanity can sometimes point you in the right direction as well, since they aren't building houses 24/7 . :)

Hope some of these suggestions might help. The TV station route helped a friend whose daughter had complications from a heart transplant and needed housing modifications that they could not afford due to medical costs that exceded their insurance pay out.


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 15:00

Tandaina--

Thomas's dad works as a programmer for Microsoft...so he's got a pretty good handle on the adaptive technologies out there...I think he's mentioned a number of the things you are suggesting. (Great minds!)

orchids2000--

Great ideas. I'm pretty certain we have contractors within our church who will help with the BUILD part--we just haven't heard from any DESIGNERS. Hadn't thought about United Way or Habitat. Excellent suggestions.

We are just in the beginning steps of this journey...I promise I'll update as time and energy allow.

I'm back at work again...Worked a six hour shift yesterday. Longest shift I've worked since my thyroid made life so difficult! I was beat by the time I got home--but still managed to cook dinner. The shade section of the garden center gets turned into a Christmas tree lot this time of year. 9-10 ft tall Christmas trees are HEAVY. ;~)

melanie


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RE: Why I've been 'absent' since Mid-October... LONG

Isn't the young man under the care of a Rehab with a hospital? They should be able to direct you to some sort of help. When my mother in law had a stroke, the Rehab people referred us to a builder who was familiar with the Federal Handicap codes.

He also is probably under the care of an occupational therapist - at least some of the time.

I am very sorry to hear that this happened to him. Do you know what caused the stroke? That is so young, it is horrifying.
Sammy


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 19:16

Sammy--

He is getting Rehab services, and OT. Thomas has Friedereich's Ataxia. Part of the cluster of symptoms is decreased heart function, which can come on very quickly. According to the cardiac docs, what happened was that Thomas's blood "gelled up" (because his heart wasn't emptying fully) and he threw a clot--which caused a heart attack and a stroke. He's now on coumadin.

The house has been extensively modified for Thomas already--this is just the last piece of the puzzle. Thomas had been living independantly in the dorm, with help from home health care, who came in morning and got him dressed, toileted, and in his chair. (He has a power wheel chair.) They returned in the evening for additional toileting and showering--and put him to bed. NOW he needs total care...though he can drive his chair for short periods of time.

This is the same young man who was recognized a year or so ago for his artwork--had a piece displayed in the Smithsonian. Couldn't accept the prize money because he didn't have a trust account in place, and he'd have lost too many services.

OT and PT are not providing any custodial care--that is all through a separate (county)program. The family is getting 35 hours/week of custodial care. Both mom and dad need to work...so it gets a little complicated. I know they are in touch with DSS and such. I also know that the mods that my friend want to her house aren't deemed "necessary." (No, they'll just make everyone's life EASIER.)

SO--that is where I'm trying to step in, and be a resource. I know it'll all work out...eventually. And Paige and I have promised one another we WILL go back to Barcelona...someday.


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by roselvr Burlington Coun (My Page) on
    Tue, Dec 5, 06 at 19:22

Melanie, I'm so sorry to read this. I've been kind of down lately with the holidays; and found a nice 21 year old kid in Iraq to "sponser" with a little bit of home for the holiday. He called me an angel, I told him how thankful I was that the draft hasn't been enacted and that I have my 21 year old son home. I can't begin to imagine if this were my son. When Anna Nicole's son died, that upset me; thinking how it very well could have been my son.

Have you thought about Home Makeover the tv show? Look into it and possibly suggest them as a recipient? From what you describe, they may very well have a chance. I think it's great that you're lending a hand, she's very lucky to have you.

Please keep us posted. Will keep everyone in my thoughts.


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RE: Grrr--message rejected--let's try a different headline!

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 19:35

Roselvr---I'm sorry you are having a tough time. Thought y'all might like to see some of the work Thomas has done--below is a link to a website he designed.

Here is a link that might be useful: Access UNC


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another link!

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 19:36

And here is a link to the award he won...

Here is a link that might be useful: VW artist award...


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RE: Why I've been 'absent' since Mid-October... LONG

I remember seeing his work and beng so impressed with his attitude [I can often get aggravated about my disability Re: society and just having to say 'can't so much]. I'm so sorry he had this happen!

I'm no help at who to call; I don't even know how one gets a handicapped placard for parking.

I would love to treat him/his caregivers to a day off... either us go somewhere fun or just hang out and give his caretakers some time. I was working when my mom started needing care at meals, and the making time part is just so hard. I'm laid back and good at smalltalk with strangers :)

I'm glad to hear you are able to go back to work! So sorry about your trip, but you are such a good friend to drop it for your friends.


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by mjsee Zone 7b, NC (My Page) on
    Tue, Dec 5, 06 at 20:35

meredith--don't give me TOO much credit--his mom was on the trip WITH me. It was a "girls trip"...something we planned together that got us both through some tough times. Whenever I was feeling REALLY low with the thyroid stuff, she'd come over and we'd plan another leg of our vacation...

Fantasy is a powerful thing.

Here is a picture of us..BEFORE we got the text message:

I'm on the right. My tummy looks "poochy" 'cause of my money belt. Barcelona is safe, but the pickpockets are GOOD.

melanie


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RE: Why I've been 'absent' since Mid-October... LONG

Melanie, I'm so sorry to hear that bad news. I'll have to give this some thought but will be back hopefully.

Carla


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RE: Why I've been 'absent' since Mid-October... LONG

Melanie, you have made my day! Your tummy looks poochy because of a money belt? I've got fat that is more poochy than your money belt. I think you are very attractive, and I am so sorry that your vacation was cut short. (Of course I am sorry about your friend, but also about you.)

Sammy


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RE: Why I've been 'absent' since Mid-October... LONG

melanie, so sorry to hear of your friend's problems. how unbelievable. google mary jo peterson kitchen.......she's an expert in universal design and the word kitchen may get you to the right one. i believe she's in connecticut. she'll help hopefully, with the proper referrals, or where she can. i'm on a plane right now to norway (internet service on the plane!) but i think she could be a fantastic source for you. hope that works. take care.


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RE: Why I've b een 'absent' since Mid-October... LONG

google ""universal design" too, that will get you in the right direction.


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RE: Why I've been 'absent' since Mid-October... LONG

Oh how awful....my heart breaks for your friend. I know her son has a long road ahead; I can't imagine how I'd feel. I don't want to imagine how I feel.......

I don't know that much about getting help, except that I know that people with debilitating injuries are usually assigned social workers while still in the hospital, and these people direct them to sources for services. Otherwise, county and state governmental agencies should be helpful.

Don't forget about the Americans with Disabilities Act. It might not help with home modifications, but you never know.


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RE: Why I've been 'absent' since Mid-October... LONG

Melanie---I'm so sorry to hear about this.

I don't know what help I can give but it saddens me to think of a young man in such a circumstance.---My father had polio when he was 9 months old and his left side remained useless all his life--He could only walk with the aid of crutches. However---I could write a book about what he accomplished during his lifetime.
And this was back in the 20's and 30's when there was no aid so to speak---I would think in today's world your friend would be able to find many avenues to assist her son.

I will pray for you and your friend.

Florence


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by mjsee Zone 7b, NC (My Page) on
    Wed, Dec 6, 06 at 10:12

The family is already hooked into social services. They ARE receiving the help that they qualify for. They get custodial care 5 days a week, for seven hours each day. They COULD have sent him to a nursing home--but only one that would accept medicaid patients. Their private insurance would only cover...I think it was 90 days. That would have been easier for the family--but he'd have "turned his face to the wall." Thomas wrote his own advanced directives when he turned 18. The hospital had to get his permission to insert (install?) his stomach-port feeding tube. He has the option of having it removed...should he so desire. I don't think he'll go that route, unless he fails to improve.

Susan--I'll get on that web-search right away. If you are willing to help...I'll keep you in mind as well. I don't think any of these modifications that Paige wants for her house are hurry-up-and-do-it-yesterday...but folks at church want to help--and keep asking her what they can do...so she's been putting together her "in a perfect world" list. I hope you have a FABULOUS time in Norway. Remember--whatever you buy--you have to get home! ;~)

Florence,Deb,Sammy, Carla--Thanks for the kind words. Keep Thomas and family in your prayers/positive energy list.

I've been over on That Home Site--there is a lighting forum! One of the memebers has offered to help me with a lighting plan once we have the blueprint for the room--he says we should know furniture and art placement before LP is designed. THAT is the sort of guidance I need(ed). I love y'all--you know that?
I'll post updates as I get them. Thank you, from the bottom of my heart.


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RE: Why I've been 'absent' since Mid-October... LONG

  • Posted by catkim San Diego 10/24 (My Page) on
    Wed, Dec 6, 06 at 13:47

How terribly upsetting for this bright young man and his family, a parent's nightmare. You are an angel to be so helpful to them. It's a difficult situation, but sounds like he and they are getting a lot of support. And the Rosers have lots of helpful suggestions. I remember when you posted about his artwork before, I was impressed.

Love your pic at Parc Guell! (What "pooch"? Give us a break!) Glad you made it to Barcelona, if only for a day.


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RE: Why I've been 'absent' since Mid-October... LONG

I can offer no help in the design effort but I can wish you all well and say a prayer that all will be done soon.

You are a great friend to help out like this, half the job is the paper trail that needs to be chased to get things moving, bless you in your quest.

valerie


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RE: Why I've been 'absent' since Mid-October... LONG

Pooch? Lol... nobody'll know that's money, that's for sure. You look awesome, btw; a child bride I take it ;]

Do lmk if y'all need any help in person.


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