Bubble Wrap Maniac
If you love popping bubble wrap... this game is for you!.gif)
www.winterrowd.com
Monday, October 27, 2008
Good times
Wednesday, October 22, 2008
Saturday!
Saturday is the day! Pray for nice weather or at least no rain!!
Plans are:
Meet at Stanley Park between 10am and 10:45am to get your Team Flash t-shirt and collect any donations. (Look for the people in yellow shirts with Flash on the front and Charland Refrigeration on back.)
Register with DSRGWM after you get your shirt, drink coffee, eat donuts.
Walk a bit.
Hang out with all the fabulous people until 2pm, raffle, food, Wally the Green Monster, music, fire truck!
Our house for more food, fun and pumpkin carving!
We can't wait to see everyone there!
Plans are:
Meet at Stanley Park between 10am and 10:45am to get your Team Flash t-shirt and collect any donations. (Look for the people in yellow shirts with Flash on the front and Charland Refrigeration on back.)
Register with DSRGWM after you get your shirt, drink coffee, eat donuts.
Walk a bit.
Hang out with all the fabulous people until 2pm, raffle, food, Wally the Green Monster, music, fire truck!
Our house for more food, fun and pumpkin carving!
We can't wait to see everyone there!
Sunday, October 12, 2008
October
apparently october is a busy month. it is also Accessible Parking Awareness Month in New Hampshire. why only NH is beyond me...
this accessible parking (a.k.a. handicap parking) thing makes me a little crazy 2 be honest. and i will tell you why. i, myself, have been permitted by the RMV of MA to utilize a handicap parking placard. this permits me to park close to buildings and stores and all that jazz. the RMV does not just hand these out. medical paperwork needs to be filled out by doctors and sent to boston, bla, bla, bla. granted, some people DO use placards that don't belong to them which makes me VERY mad. and i hope they are all caught and receive the "punishable fine". do you have any idea the limited # of "accessible" parking spots there are?????????
pardon me, i tend to get all wound up on these issues.
if you looked at me getting out of my truck in an "accessible" spot, you would think i stole the placard from my grandmother. you wouldn't think there was anything wrong with me, unless, of course, you were fortunate enough to see me strap on my leg braces while trying to balance against my truck and adjust everything appropriately (this can't be done inside a vehicle, so it IS pretty funny 2 watch).
here is where i educate you with a voice of sarcasm and frustration. the term "you look so good" should NEVER be used in converation with a person who has an invisible disease like MS. those words stab into the heart with a force that i cannot even begin to describe. the MS Society actually has a brochure on this very topic, which i sometimes want to mail to everyone in the universe. ok, so maybe i don't "look" diseased on the outside, but unfortunately MS is eating away at my central nervous system on its own timeline. unless you can crawl into my brain and spinal cord, you can't "see" this happening and there is nothing to "look" at. maybe someday, though, you will get to SEE the effects of that, which makes me really sad and mad and maybe even a bit scared.
reality check: you don't need to see everything to make it real.
the moral of this story is... please don't judge by the way people look. please don't stare at the young women (me) who pulled into the handicap parking spot and looks so good. AND certainly... please don't park in an Accessible Parking Spot, unless it is YOUR picture on the placard, OR the picture of someone IN your vehicle.
going to do some meditation now...
---becca :-)
this accessible parking (a.k.a. handicap parking) thing makes me a little crazy 2 be honest. and i will tell you why. i, myself, have been permitted by the RMV of MA to utilize a handicap parking placard. this permits me to park close to buildings and stores and all that jazz. the RMV does not just hand these out. medical paperwork needs to be filled out by doctors and sent to boston, bla, bla, bla. granted, some people DO use placards that don't belong to them which makes me VERY mad. and i hope they are all caught and receive the "punishable fine". do you have any idea the limited # of "accessible" parking spots there are?????????
pardon me, i tend to get all wound up on these issues.
if you looked at me getting out of my truck in an "accessible" spot, you would think i stole the placard from my grandmother. you wouldn't think there was anything wrong with me, unless, of course, you were fortunate enough to see me strap on my leg braces while trying to balance against my truck and adjust everything appropriately (this can't be done inside a vehicle, so it IS pretty funny 2 watch).
here is where i educate you with a voice of sarcasm and frustration. the term "you look so good" should NEVER be used in converation with a person who has an invisible disease like MS. those words stab into the heart with a force that i cannot even begin to describe. the MS Society actually has a brochure on this very topic, which i sometimes want to mail to everyone in the universe. ok, so maybe i don't "look" diseased on the outside, but unfortunately MS is eating away at my central nervous system on its own timeline. unless you can crawl into my brain and spinal cord, you can't "see" this happening and there is nothing to "look" at. maybe someday, though, you will get to SEE the effects of that, which makes me really sad and mad and maybe even a bit scared.
reality check: you don't need to see everything to make it real.
the moral of this story is... please don't judge by the way people look. please don't stare at the young women (me) who pulled into the handicap parking spot and looks so good. AND certainly... please don't park in an Accessible Parking Spot, unless it is YOUR picture on the placard, OR the picture of someone IN your vehicle.
going to do some meditation now...
---becca :-)
Where's the $$$$$$
OK. here is where i start to get mean (ish). as you have read.... October is Down Syndrome Awareness Month. joanne has so nicely educated everyone a little bit about DS. the Buddy Walk is less than 2 weeks away & we are disappointed at the LACK of donations from the people who "love" us... come on, now- no donation is 2 big or 2 small. is ANYONE feeling guilty yet????? i don't really want 2 use that tactic, but i will.....
the Down Syndrome Resource Group of Western MA needs our help 2 continue supporting individuals & families in the DS world.
xoxoxoxo
the Down Syndrome Resource Group of Western MA needs our help 2 continue supporting individuals & families in the DS world.
xoxoxoxo
Saturday, October 11, 2008
October is Down Syndrome Awareness Month!
Down syndrome Stats:
Down syndrome occurs in every 600-800 births.
It is caused by an extra copy of the 21st chromosome.
There are 3 types of Down syndrome:
Nondisjunction makes up 94% of all cases. This means that every cell has the extra 21st chromosome.
Translocation makes up 3-4% of all cases. This is an inherited form of Down syndrome.
Mosaic makes up 2% of all cases. This means that not every cell has the extra chromosome.
The diagnosis of Down syndrome is made by a chromosome analysis test called a Karyotype. There is a slight reccurence risk for future pregnancies.
Features of Down Syndrome:
Individuals with Down syndrome may have a few or all of the following characteristics:
Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Enlarged tongue
Fusion / syndactyly of 2nd and 3rd toes
Medical Complications Associated with Down syndrome:
Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlantooccipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
CataractsVision Problems
Hearing Loss
Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce
Increased Risk of Testicular Cancer in Males
Intellectual Disability & Developmental Delay for Individuals with Down
syndrome:
Variable Range of Mental Retardation from Mild to Moderate
Mean (Average) IQ of 42
Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management
Long-Term Prognosis for Individuals with Down syndrome:
Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Special Education Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Life Expectancy (age range of 50s-60s)
More Like Other Children Than Different
Down syndrome occurs in every 600-800 births.
It is caused by an extra copy of the 21st chromosome.
There are 3 types of Down syndrome:
Nondisjunction makes up 94% of all cases. This means that every cell has the extra 21st chromosome.
Translocation makes up 3-4% of all cases. This is an inherited form of Down syndrome.
Mosaic makes up 2% of all cases. This means that not every cell has the extra chromosome.
The diagnosis of Down syndrome is made by a chromosome analysis test called a Karyotype. There is a slight reccurence risk for future pregnancies.
Features of Down Syndrome:
Individuals with Down syndrome may have a few or all of the following characteristics:
Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Enlarged tongue
Fusion / syndactyly of 2nd and 3rd toes
Medical Complications Associated with Down syndrome:
Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlantooccipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
CataractsVision Problems
Hearing Loss
Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce
Increased Risk of Testicular Cancer in Males
Intellectual Disability & Developmental Delay for Individuals with Down
syndrome:
Variable Range of Mental Retardation from Mild to Moderate
Mean (Average) IQ of 42
Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management
Long-Term Prognosis for Individuals with Down syndrome:
Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Special Education Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Life Expectancy (age range of 50s-60s)
More Like Other Children Than Different
Friday, October 10, 2008
the history of this blog
so here's how this blogger-thing happened....
i am challenged when it comes to all the "cool" stuff people do on the computer, like My Space and Blogs and all that jazz. people keep peer pressuring me on the issue, which i naturally bark at. but my good pal joanne set this all up and my only responsibility is to participate. i like that.
Team FLASH made it's debut at the MS Walk at Forest Park in May, 2006, not long after i was "officially" diagnosed with MS (Multiple Sclerosis). We have grown bigger and badder each year. The newest member of Team FLASH (Vinnie) has given us another cause to support. We now have the pleasure of participating in the Buddy Walk to raise funds for the Down Syndrome Resource Group of Western MA. We will make out debut on October 25th. (P.S. this is also a reminder that we still NEED your donations!!!!!).
official business is over. time for the juice. one of the other things we want to do with this bloggity-blog is truthfully write about the laughter & the tears of DS (Down Syndrome) and MS (Multiple Sclerosis). perhaps it will educate some readers, which is always a bonus. perhaps it will provide insight into OUR worlds and how we manage to keep smiling, even through the occasional tears. we welcome your feedback.
i am currently "making MS my b*tch," as it is so bluntly stated in my profile. i am receiving chemo treatments in hopes of slowing down the progression of my MS. i had a treatment exactly one week ago and boy did it kick me down. the real pain in the ass is that i need to drink SO much water, which produces SO much urine. that is truly one of the only reasons i am forced to get off the couch or out of the bed. joanne and i have discussed numerous ways in which I could bypass all that, but i haven't tried any of them........ yet.
at any rate, there was already improvement in the strength of my legs and in my walk after the first treatment, so keep that prayer circle going!
---becca :-)
i am challenged when it comes to all the "cool" stuff people do on the computer, like My Space and Blogs and all that jazz. people keep peer pressuring me on the issue, which i naturally bark at. but my good pal joanne set this all up and my only responsibility is to participate. i like that.
Team FLASH made it's debut at the MS Walk at Forest Park in May, 2006, not long after i was "officially" diagnosed with MS (Multiple Sclerosis). We have grown bigger and badder each year. The newest member of Team FLASH (Vinnie) has given us another cause to support. We now have the pleasure of participating in the Buddy Walk to raise funds for the Down Syndrome Resource Group of Western MA. We will make out debut on October 25th. (P.S. this is also a reminder that we still NEED your donations!!!!!).
official business is over. time for the juice. one of the other things we want to do with this bloggity-blog is truthfully write about the laughter & the tears of DS (Down Syndrome) and MS (Multiple Sclerosis). perhaps it will educate some readers, which is always a bonus. perhaps it will provide insight into OUR worlds and how we manage to keep smiling, even through the occasional tears. we welcome your feedback.
i am currently "making MS my b*tch," as it is so bluntly stated in my profile. i am receiving chemo treatments in hopes of slowing down the progression of my MS. i had a treatment exactly one week ago and boy did it kick me down. the real pain in the ass is that i need to drink SO much water, which produces SO much urine. that is truly one of the only reasons i am forced to get off the couch or out of the bed. joanne and i have discussed numerous ways in which I could bypass all that, but i haven't tried any of them........ yet.
at any rate, there was already improvement in the strength of my legs and in my walk after the first treatment, so keep that prayer circle going!
---becca :-)
Thursday, October 2, 2008
Info from the Western Ma DS group
http://www.dsresource.org/buddywalk/signup.htm
Hi EveryBUDDY!
Please feel free to forward this link to all of your Buddies planning to walk on October 25th, at Stanley Park in Westfield. Once again this year you will be pampered with;
Coffee (From our good friends from Seattle that wish to remain anonymous) and Doughnuts (Thanks Diana's Bakery) at 10AM
A bit of exercise at 11AM
Sumptuous Burgers, Dogs & Chips (Sponsored by the West Springfield Firefighters) from 11:30AM - 1:00PM
Ice Cold Coca-Cola Products All Day (Thanks Coca-Cola Enterprises and Coca-Cola Northern New England)
The Rocking DJ Jay all Day (Thanks Menzel & Associates, CPA)
Cotton Candy All Day (Thanks Dr. Maureen Quinn, D.D.S.)
Popcorn All Day (Thanks Kelleher Brothers Landscaping)
Another Visit from Our Great Big Buddy Wally the Green Monster (Sponsored by the Great People from HESS)
Remember to "Back Up Your Buddy" on the Buddy Walk T-Shirt... Teams can pledge to raise $500 (Or, find a company to sponsor for $500 and you both get your logo on the Back of the T-Shirt
Raffle at 1:30PM
2PM Thanks for Coming - See You Next Year
As always there is no cost for the WMass Buddy Walk. Every walker receives a beautifully designed commemorative Buddy Walk T-Shirt, Breakfast, Lunch, Popcorn, Cotton Candy & Entertainment thanks to our sponsors. There is a small cost for the raffle. Walkers can solicit sponsors for the Buddy Walk (see attached form). Donations will be collected the day of the walk at the Buddy Walk registration welcome center.
Please support The WMass Buddy Walk Sponsors
2009 Down Syndrome Resource Group of Western MA Calendars will be available at the Walk for $10. Thanks Lady Diana McLean for your beautiful work.
Hi EveryBUDDY!
Please feel free to forward this link to all of your Buddies planning to walk on October 25th, at Stanley Park in Westfield. Once again this year you will be pampered with;
Coffee (From our good friends from Seattle that wish to remain anonymous) and Doughnuts (Thanks Diana's Bakery) at 10AM
A bit of exercise at 11AM
Sumptuous Burgers, Dogs & Chips (Sponsored by the West Springfield Firefighters) from 11:30AM - 1:00PM
Ice Cold Coca-Cola Products All Day (Thanks Coca-Cola Enterprises and Coca-Cola Northern New England)
The Rocking DJ Jay all Day (Thanks Menzel & Associates, CPA)
Cotton Candy All Day (Thanks Dr. Maureen Quinn, D.D.S.)
Popcorn All Day (Thanks Kelleher Brothers Landscaping)
Another Visit from Our Great Big Buddy Wally the Green Monster (Sponsored by the Great People from HESS)
Remember to "Back Up Your Buddy" on the Buddy Walk T-Shirt... Teams can pledge to raise $500 (Or, find a company to sponsor for $500 and you both get your logo on the Back of the T-Shirt
Raffle at 1:30PM
2PM Thanks for Coming - See You Next Year
As always there is no cost for the WMass Buddy Walk. Every walker receives a beautifully designed commemorative Buddy Walk T-Shirt, Breakfast, Lunch, Popcorn, Cotton Candy & Entertainment thanks to our sponsors. There is a small cost for the raffle. Walkers can solicit sponsors for the Buddy Walk (see attached form). Donations will be collected the day of the walk at the Buddy Walk registration welcome center.
Please support The WMass Buddy Walk Sponsors
2009 Down Syndrome Resource Group of Western MA Calendars will be available at the Walk for $10. Thanks Lady Diana McLean for your beautiful work.
Subscribe to:
Posts (Atom)