SUBMITTED BY KATHY: My sister has been living as a quadriplegic for sixteen months. Many things we take for granted has been major challenges for Barbie and her family. They have settled into a daily routine that has become their norm. (I can’t imagine) Beginning at 5:00 am, Barbie’s husband and son start the day by taking care of her, first tending to her bathroom needs and then a shower and getting her dressed. Barbie is able to brush her teeth, apply her make-up and do her own hair. Cliff (her husband) prepares breakfast while Westley (Son) gets ready and goes to work by 7:00 am. Catherization must be done every 4 to 5 hours, 24 hours a day. There is never more than four hours of sleep at any one time. Barbie is unable to roll-over or change positions without assistance; she relies totally on her husband and son. The day proceeds with either appointments or daily activities at home. Barbie has learned to help with such things as running a vacuum, ironing, some cooking and dusting. (If it can be done sitting in a wheelchair, she has done it!) She even made curtains for our dad’s cabin!
One of the biggest challenges has been the severe spasms. Every move she made, every time someone touched her and every time the vehicle hit a slight bump in the road, she would experience massive spasms, at times throwing her completely off balance. Every spasm was like a lightning bolt ending in her shoulders and head with severe pain. Numerous medications would not control the spasms, they only made her feel sleepy and like she was “living in another world.” Until her doctors were able to determine if the spasms could be controlled with medication, she had no choice but to live with them every day. Since it was necessary to travel two to four hours one way for appointments at least twice a week, they needed a smoother riding vehicle. The only handicap vehicle that they were able to obtain (they nicknamed “the bus”) after her injury, had to be retired because it rode so rough. (see the photo album) . The next affordable option was to borrow a van and install a used Bruno seat, donated by a friend. This worked for about a month, when the gear system failed in the Bruno seat and parts were not available. With no choices and needing transportation, they purchased a $36,000 handicap accessible wheelchair van. Finally, they had a dependable, smooth riding vehicle! Wrong! The van has let them stranded on the highway, three times! The first time, on the interstate on the way to a doctor appointment, Barbie had to be transferred to a regular vehicle, that’s a challenge in its self. The second time, again on the interstate in a rural area on the way home from a surgical procedure, again they had to wait on a ride, transfer and have it towed. And the third time was just last week on the way home from a family funeral in Williamsport. The van is currently at the Chrysler dealer in Williamsport, hopefully they will find the problem. In the mean time, they are without transportation again. Something we all take for granted!
Barbie has been battling ongoing UTI’s since the very beginning and on top of that, had to have gall bladder surgery this year after becoming very ill. After many doctor visits and numerous tests over this past year, last month a pump was surgically inserted to send medication directly to the spine to control the spasms. What a life changing procedure! Although, she struggled with severe headache pain for a couple weeks after the surgery, the spasms have been reduced immensely and no oral medication is needed. As she stated, “I can think more clearly now, I feel more normal.” It’s been a long road, but it still hasn’t stopped her from helping others. With the support of her family, she helped (for the 24th year), the Plunketts Creek Township Volunteer Fire Department with their Haunted Hayride, which is their largest fundraiser. She also helped Little Marsh Volunteer Fire Department with their fall fundraiser. Even with all the obstacles and disappointments, this family continues to be positive. They care for her medical needs, her daily needs, they make sure the things that were always important to her, like fundraising for local organizations, hunting, fishing and of course spending time with her daughter and grandson are always on her agenda. They have never looked at the situation as “why us?” Her husband said he married her for “better or worse” and it could be lot worse. Since their home was a small two story and would be too costly to make handicap assessable, without being asked, her son remodeled his small two bedroom bachelor pad and created a single hospital-like bedroom with handicap shower, bathroom, and equipped it with a ceiling hoist to make caring for his mother much easier. Concerned she would feel helpless, he enclosed his back porch and made a handicap assessable sewing/computer room to ensure she had something to do. The couch is his bed, the living room his sleeping area, but insists he doesn’t mind, he’s helping his parents and that’s more important than where he sleeps. We ask that you pray for a miracle but if it’s not in God’s plan, this family has the strength to make the best of each day. Hug your loved ones, make memories while you can and be thankful for good health!
Jan 21, 2017
Nov. 12, 2016 was one year ago that my injury occurred. A lot has happened to me since then. I have overcome many obstacles and learned to do things much differently than I use to. Things that I use to take for granted, I realize now were life's little pleasures.
I am still paralyzed from the collar bone down and have not regained any movement. I have no feeling on the underside of my arms. My hands and finger tips do not have the sensations they use to but I can still use them. I am thankful for that.
I have gained some tingling sensation in spots of my body. I can not actually feel someone touching me but sometimes when I am touched in certain places I can feel a tingle.
My health for the most part has been pretty good.
I have been through many UTI's throughout the year. We are still working with my urologist to solve this issue.
Back in May I was very sick and after several test they found I had a large gall stone. The doctor said I had to have my gall bladder removed. I didn't want another surgery but I sure felt better after that.
As time goes by the worse the spasms have become. I have been through pain management to try and get on top of things but so far nothing seems to work. The medication makes me feel tired and hard to function at times. We are still holding onto hope. On Tuesday Jan. 24, 2017 I will be having an Intrathecal pump implanted (a device to control pain).
I am hoping this will change the quality of my life. It will make accomplishing a task so much easier.
My next goal I hope to achieve will be to drive. I want to learn how to drive using hand controls. This would give me so much more freedom and relieve my family of one less duty they have caring for me.
None of this would be possible with out the support of my family and friends. The donations that have come in this past year has helped me tremendously with the medical bills. I cannot thank everyone enough for the donations and help they have given to me. It has meant the world to my family and I. I hope there will come a time in my life that I can "pay it forward" to someone who will have a need and appreciate it as much as I did. Once again thank you so much for the much needed help and prayers.
May 22, 2016
It's been 6 months since Barbie had her injury. There has been many hurdles including her recent surgery to remove her gallbladder. Muscle spasms have continued to get worse, making riding in a...
Dec 26, 2015
Barbie was discharged and spent Christmas at home. Although, she is very happy to be home after more than a month, Barb and her family have a very long road ahead. The house is still being...
Dec 07, 2015
Part of Barbie's occupational therapy is to strengthen her hands and fingers and learn to use them for delicate tasks. Today occupational therapy was fun and festive! She made a gingerbread house!...
Dec 07, 2015
This past weekend was the first "huge" step in preparing for Barbie's homecoming! Thanks to 14 volunteers, the ramp is complete and the inside construction has begun! Thanks to everyone who gave...
Dec 07, 2015
Barbie has asked me to tell everyone that she "appreciates the prayers, words of encouragement and support". Knowing she has all this support is what keeps her going. Barbie said "how do you thank...
Dec 05, 2015
Barbie is working hard, to learn a new way of life. She is required to pass several "tests" before she can go home. She needs to be as independent as possible and build the strength in her upper...
Dec 01, 2015
Barb and her family had a meeting with the medical team yesterday which proved to be very informative. Although there are many hurdles before Barbie can be discharged, their goal is for her to be...
Nov 27, 2015
It has been two weeks since Barbie's injury occurred. She is doing well with her "very intense" therapy. Her husband and kids are by her side everyday learning their new way of life. Although...