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Strapples
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16 Dec 2007, 2:14 pm

SteelMaiden wrote:
Strapples wrote:
SteelMaiden wrote:
Strapples wrote:
ahh... great thing of being homebound and not going to school...


Um, why are you homebound?


if you check my website http://www.alinssite.info i have a progressive disease...

parents decided to pull me out for multiple reasons 1. the disease 2. worsening sensory issues made school miserable and made me very agitated and use my cell phone a lot inside the school

it is not likely i will be going back...


My god I'm so sorry.


:)

no problem...

im a bit of an optimist so i dont look at negatives in the disease... i cant wait to get my powerchair... yay straps!! !


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SteelMaiden
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16 Dec 2007, 2:45 pm

Strapples wrote:

:)

no problem...

im a bit of an optimist so i dont look at negatives in the disease... i cant wait to get my powerchair... yay straps!! !


Heh that's a good view. You're amazing!


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Strapples
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16 Dec 2007, 3:04 pm

SteelMaiden wrote:
Strapples wrote:

:)

no problem...

im a bit of an optimist so i dont look at negatives in the disease... i cant wait to get my powerchair... yay straps!! !


Heh that's a good view. You're amazing!

yeah... Oh did I mention Ill have a place that's very comforting for me to sleep :P


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Odin
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16 Dec 2007, 6:28 pm

I hate hot, humid weather with a vicious passion, I find it incredibly distressing and suffocating and will have a meltdown If I'm outside when it is hot and humid out for too long, thus making good air conditioning vital for me. On the other hand I am remarkably tolerant of the cold, which is definitely a good thing during the winter here in Fargo! I actually get intolerably warm wearing a winter jacket when it is 25F out and sunny! 8O


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Strapples
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16 Dec 2007, 6:30 pm

Odin wrote:
I hate hot, humid weather with a vicious passion, I find it incredibly distressing and suffocating and will have a meltdown If I'm outside when it is hot and humid out for too long, thus making good air conditioning vital for me. On the other hand I am remarkably tolerant of the cold, which is definitely a good thing during the winter here in Fargo! I actually get intolerably warm wearing a winter jacket when it is 25F out and sunny! 8O


hmm... guess im the odd one who likes that sweaty hot sticky stuff...


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Odin
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16 Dec 2007, 6:36 pm

Strapples wrote:

im a bit of an optimist so i dont look at negatives in the disease... i cant wait to get my powerchair... yay straps!! !


Hey, Strapples, how large is that powrchair supposed to be? I have a friend with cerebral palsy that has a large, rugged powered wheelchair with a significantly larger engine then the powerchairs I've seen advertise on TV because he does a lot of outdoors stuff.


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Strapples
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16 Dec 2007, 6:39 pm

Odin wrote:
Strapples wrote:

im a bit of an optimist so i dont look at negatives in the disease... i cant wait to get my powerchair... yay straps!! !


Hey, Strapples, how large is that powrchair supposed to be? I have a friend with cerebral palsy that has a large, rugged powered wheelchair with a significantly larger engine then the powerchairs I've seen advertise on TV because he does a lot of outdoors stuff.


your friend must not have a profound disability requiring very high end positioning and seating... usually the more ruggedized powerchairs cannot accommodate high end needs, and ironically mine are going to become higher level as time goes on... at some point i will require a head array (control with head due to total arm function loss) and a ventilator tray)

to see a full description of my powerchair please click below!


The Powerchair Description!

and NO its not one of the cheap TV powerchairs.... those are designed for people who are still semi-able bodied and do not require very high end S&P (seating and positioning)

report below

____________________________

Statement of Medical Necessity and Equipment Justification

Date of assessment: 10/1/07
Date of quote: 9/25/07 (prices not final get dealer price)
Patient's name: Alin
D.O.B.: 8/8/91 Age: 16 years, 3 months
Medical diagnosis's: neuromuscular degenerative disease NOS, sensory integration/processing disabilities, Scheuermann's kyphosis, scoliosis, hypotonic arms/trunk/neck, hypertonic legs, spastic legs, seizures NOS, autism NOS,

Medical Considerations/History
Alin is currently medically unstable, his condition is currently declining; he is functionally bedridden as he cannot walk at all without assistance and with assistance can only walk under 10 feet. His condition has not showed any ability to regenerate.

Motor Observation

Reflexes and Abnormal Muscle Tone:
Alin exhibits low tone in his arms, trunk, and neck. The low tone of the trunk compromises positioning and posture when not supported correctly. Hypertonia of the legs creates unprovoked constant muscle pain and other symptoms. When excited muscle tone may increase but usually drops back to original state before movement occurs. He also exhibits severe hyperreflexia in his legs which is attributed to the disease. He also exhibits other abnormal reflexes.

Range of Motion/Motor Strength:
Alins control of active range is variably limited depending on factors like fatigue and neurological condition that day and other factors. Manual muscle testing cannot be adequately performed on any individual with hypotonicity or hypertonicity; an observational evaluation indicates that Alin has severely low muscle strength and stamina. Power and coordination are variably below normal.

Voluntary, Isolated, Controlled Movements:
Alin has impaired movement across the board, voluntary movement, isolated movement, and controlled movements are variably impaired, depending on factors like fatigue and neurological condition that day and other factors.

Posture:
Alin exhibits severe postural problems, problems are due to his neurological condition creating inability to manage/sense own posture without assistance in positioning along with muscular problems. He has a severe progressive kyphosis with moderate progressive scoliosis, when seated his back automatically curves unless properly supported, his back does not exhibit as severe an automatic curve when sitting in a tilted state, as the angle of tilt increases the curve decreases. His head also has severe support issues due to hypotonia of his neck muscles, his neck muscles get tired very quickly, as of right now he uses his arm to hold up his head when his neck is fatigued.

Sensory-Motor Patterns and Processing:
Alin has hypersensitive sensation, the hypersensitivity results in slight elation with good sensations and crabbiness and erratic behavior with sensation he does not like, he is aware of some body postures but this awareness is highly variable; he appears to have some apraxia. He lacks functional equilibrium and righting reaction and falls over easily. A very noticeable "rocking" motion is present unless sitting in a tilted state, this is attributed to the sensory integration/processing disability, in the last year this has become worse. Powered mobility for Alin itself, controlled independently would assist in development of his motor skills, and sociological skills as he would have independence, with proper seating his other conditions (kyphosis and scoliosis) can be slowed, halted and or improved, function can also be increased through the use of a correct seating system.

Current Seating
Alin is currently seated in a companion chair that mom pushes for him, there is no adaptive seating being used, his current seating is actually uncomfortable for him and does not create any benefit except for increased DEPENDANT mobility. When seated in his companion chair his posture is severely abnormal due to the lack of support. The back curve is severe and is continuing to progress. Along with the abnormal posture, his extremities are more painful and exhibit more spasticity and hypersensitivity than usual. His hypertonia is also notably increased. Motor function across the board is further impaired in his companion chair. There is also a notable increase in his irritability due to the bad sensory integration/processing exacerbation created. His current seating is no longer viable due to his declining condition and the lack of independent mobility making physically going to school impossible; powered mobility with custom upgrades is required due to his declining condition.

Specific Recommendation's
The Invacare TDX-SP would be the most suitable power base to meet Alins needs. The electronics allow easy expansion of controls and if needed alternative switch access. The TDX-SP also exhibits very good battery range and has very good records of reliability. The TDX-SP has all five of the Total Driving Xperience technologies, justification for the technologies is as follows. SureStep Suspension is required as Alin will be using the powerchair for full time mobility indoors and outdoors including in buildings with unmodified thresholds. MK5-6 electronics allow Alin a centralized control system to control his tilt system, and have multiple "drives" allowing Alin to have a drive programmed for at home, school, work, and outside. Center Wheel Drive is an absolute requirement with Alin as he does not have proper sensory integration/processing abilities to accommodate for any turning wideness, he requires the ability to turn on the spot and be highly maneuverable, this is also required as he will be primarily using his powerchair in indoor environment. Stability Lock is highly recommended as a safety when there is any tilt system being used as Alin does not have the perceptual processing to process what angles would become unsafe for him to drive in, therefore, a pre programmed mechanical "stop" is necessary. The TDX-SP is also required as it can accommodate high end seating systems and a tilt system. COST 6,000

Tilt system is required as Alin has very limited weight shifting and readjustment abilities, he also just falls into whatever position he is mechanically placed in, a powered tilt system would allow totally independent mobility and positioning control to improve stamina, function, and comfort. Highly noticeable general motor and swallowing function improvements are noted when Alin is in a tilted state; therefore, it is likely that the tilt system will be left at a small (<15 degree) tilt at all times to allow proper "fall in" in his posture ("fall in" meaning Alin will not have to hold himself up as he will be completely externally supported to allow better energy usage) COST 5,500

Stealth Comfort plus 10" headrest will provide proper head support, and is required for several reasons, Alin's head support issues would be mitigated. Alin's constant tilt axis requirement requires that Alin have some sort of external head support. (MUST BE ORDERED ON PINDOT ORDER FORM) COST 500.00

"airline" seatbelt to provide safety at all times and to allow Alin to ride in vehicles right in his powerchair. Transfers to ride in vehicles are unneccesary and would compromise Alins support systems, and could create a safety risk if transfer failure is to occur "airline" seatbelt is the easiest and simplest method for him and his caretaker to use. COST 50.00

Transport Brackets to allow Alin to ride in vehicles right in his powerchair. Transfers for vehicle transport are unnecessary and would compromise Alins support systems, and create a safety risk if transfer failure is to occur. (willing to pay out of pocket) COST 250.00

MPJ Multi Drive Joystick is required to allow Alin to control his tilt system right from his joystick and have the multiple drives he requires as stated in the TDX5 base justification. COST 750.00

Quad Link Retract Joystick Mount MPJ Plus is required as Alin needs to be able to move the joystick out of the way to get as close as possible to desks and tables. It is also required since the doors in the house are not wide enough to have a statically mounted joystick.
COST 279.00

Group 24 Batteries are required as Alin will be in his powerchair full time and will require long-range between charges. (willing to pay out of pocket) COST 410.00

Contour U custom seating is required as Alin requires full external postural support and has complex seating needs due to spinal deformities and high susceptibility to further deformation from incorrect support systems, a fully custom support system would completely eliminate the risk for further degeneration of his current deformities and may even be able to help with improvement of the current deformities. It is also the only known seating system to not exacerbate Alin's sensory integration/processing disabilities. Contour U custom seating would allow improved positioning, stamina, function, and comfort. COST UP TO 2,000

Swing-away footrests and heel loops/ankle straps are required for Alin's situation, Swing-away footrests would allow for easier transfers. heel loops and ankle straps are considered due to alin's bad leg control which would likely lead to his feet falling off the back of his footrests, the ankle straps are necessary for when his leg spasms could become dangerous to him or the environment and also will allow for better control over positioning.
COST 56.00

Daessy laptop mount is needed as Alin will be full time in his powerchair and desks in the house are not roll-under accessible thus making using a computer on a desk inviable, also with Alins constant tilt axis requirement using accessible desks would not be viable due to the need to be sitting up straight to use a roll under desk; therefore, it is required that he has his computer mounted. He also needs his laptop to be wherever he is as it is his only way of communicating other than verbally, no productivity is gained without the laptop. COST 1000.00

Chest harnessing is required as alin has very low trunk muscle tone and very bad self positioning abilities. COST UP TO 500.00

TOTAL COST 19,000ish

Primary Uses of powered mobility equipment
If Alin receives powered mobility equipment it will be used for independent full-time mobility and assist Alin with proper positioning and be conducive to his other conditions, with the powered mobility equipment going to school would become possible again, as right now it is impossible and he is currently on home bound education program. This creates a negative benefit for him sociologically as he has no outside interaction, interaction is limited to online interaction through his computer; with powered mobility he would be able to physically go places and interact with people independently.

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well... looks like the threads been threadjacked for discussion of me... lol


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SteelMaiden
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19 Dec 2007, 4:26 pm

Strapples wrote:
yeah... Oh did I mention Ill have a place that's very comforting for me to sleep :P


Hm?


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themarsman
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19 Dec 2007, 4:33 pm

Hello!! !! !! I Live in Canada and you have to enjoy both hot and cold because there are hot summers and cold winters. And you don't choose winter or summer!!


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SteelMaiden
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19 Dec 2007, 4:36 pm

themarsman wrote:
Hello!! !! !! I Live in Canada and you have to enjoy both hot and cold because there are hot summers and cold winters. And you don't choose winter or summer!!


Yeah, that's definitely true! Living in London means everything is relatively mild.


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brfandan
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19 Dec 2007, 5:17 pm

heat? i love heat!!

Image

hah, but seriously, i'd rather be warm and sweat than shiver from the cold.



Strapples
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19 Dec 2007, 5:28 pm

brfandan wrote:
heat? i love heat!!

Image

hah, but seriously, i'd rather be warm and sweat than shiver from the cold.


I'm the same I'd rather be hot sweaty and sticky than be cold


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Tequila
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19 Dec 2007, 9:46 pm

I much prefer it to be warm than cold. I'm sat here freezing half to death and there isn't a great deal I can do about it. :(



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19 Dec 2007, 9:54 pm

I hate being hot. And it's Summer here in Australia!



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19 Dec 2007, 10:03 pm

8O OMG the tv man was right



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19 Dec 2007, 10:10 pm

It's about 30 degrees celsius here. I have the ceiling fan on though.