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| Barbie suffered a tragic ski accident at Sunday River on December 8th, 2002. Barbie remains paralyzed from the neck down from the accident. Barbie as always is determined to recover as best she can and we all know that she is quite an amazing person. It has been a very difficult holiday period for us, but we are dedicated to make the best of this tragic event. We cannot alter or deny, it has happened and we can only move forward. The support we have received from everyone has been incredible. We are extremely grateful. You have no idea how important it has been. Ben and Becky cannot really understand the magnitude of Barbie’s injury but we are helping them cope with it. They are our prime motivation for getting through this difficult time. |
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Posted 11/23/2005 11:00 am
Update November 23, 2005 from May 23, 2005.
Yes, another significant amount of time has passed since I wrote an update for everyone. Do rest assured that if any major change happens I will make sure a notification is sent to all, if I can’t get one out, I will ask Rick to do so.
Barbie has been in an overall sense stable and well most of the time. She was very uncomfortable this past summer with being congested and her hypersensitive skin – it makes her feel cold all the time. Barbie’s left arm is the most sensitive. It might be 90 degrees out, and she has a blanket wrapped around her left arm as it cold! The inexssuffilator has done much to relieve the congestion, but really doesn’t do much to deal with the root issue. The excessive congestion limited her time to go to Keene and have physical therapy on the ‘electrical stimulation’ bicycle. We changed her routine while this congestion persisted to see another physical therapist to help develop a program to strengthen her arms. Barbie has some control over her left biceps which is what has allowed her to drive her power chair, and some minimal movement in her right arm. The program we set up was to train both her PCA’s to do these exercises at home on a regular basis. The results of this have improved her ability to drive her wheel chair, although she still doesn’t have enough strength to put her hand back on the controller if it slips off, and her arm hangs directly down.
The problem with her congestion is that the medication she was on was ineffective, both we and her physician recognized that, Dr. Bergman wrote a script for another medication which she felt might work in her circumstances, but it was denied several times and appealed. Finally, the major danger of this congestion (pooling and infection) brought on the symptoms of pneumonia and fortunately we recognized it quickly and were able to deal with the pneumonia at home, with antibiotics and not require a hospitalization (usually about 2-3 weeks) – not on our list of places to be! Finally, with the pneumonia now at issue we were able to finally get the script approved. Are you ready for this; I picked up the first treatment and could not believe that the new medication was in fact almost 30% less expensive as what she using that didn’t work! Can you figure that out? I guess despite the fact it was less expensive, it didn’t fit some criteria that the insurance provider set up. I would think that they would jump at the chance to provide a less expensive alternative – so much for logic, and the comfort of the patient. The newer medication ‘Zyrtec’ has worked very well so far, Barbie has been on it for about a month and a half. Her overall congestion is far less (she will always have some) she hasn’t missed a single visit to Keene from congestion. And most importantly, she isn’t dealing with the frustration of being congested all the time. This past summer, Barbie didn’t get out a lot simply because of her congestion. We can’t carry around her inexssuffilator everywhere we go.
Barbie didn’t do much with her voice recognition software this past summer, mostly because of the congestion and frustration when it interfered with what she wanted to do. I hope she can get back to that now that she is less congested.
Barbie is comfortable in her routine, which helps keep her condition stable but her routine is limited. Barbie does get out several times each week, but that is primarily to therapy. Barbie went out several times this past summer with both her Mother and friends to lunch and also gone to ‘Slattery’s’ with myself and Ben and Becky for supper. Going out, isn’t something that is on her priority list but she will and I know she is looking forward to Thanksgiving dinner at Rick and Nancy’s tomorrow. But just to go out, isn’t a priority. It isn’t as simple as just ‘let’s go for a ride’, or ‘let’s go to this get-together’ it requires a lot more than a spontaneous desire – usually, I have to check out the site to make sure it is accessible look for potential issues. The following is an example of how even the best planning doesn’t work for her, it requires a different level of sensitivity to her needs.
This fall I was honored with the ‘Alumni Achievement Award” from Fitchburg State College (my Undergraduate degree and Masters were from Fitchburg State College – Doctorate is from U-Mass) and Barbie went, along with Nancy and Barbie’s mother to the breakfast ceremony. That required a change in her daily routine, which was ok, I checked out the site to make sure it was accessible and her needs would be taken care of. Well, the best plans went haywire. It was very cold (not expected for that time of the year), the parking area was some distance away – I could unload the chair at the door, but the lift attendant wasn’t available just yet, the search was on for him, but in the meantime it was quite cold waiting and when he finally arrived the lift wouldn’t work! Well, the college administrator had a back-up plan which meant getting Barbie back into the van and driving to the back side of the dorms and entering via a ramp at the back of the building. Well, that worked. Then the ‘bad news’, the room set up for the breakfast was incredibly cold – even I was cold, along with everyone else. The award being presented to me was at the end of the agenda so we would be there for a long time. John Gallagher a former colleague was to introduce me - I told him that if he was not to talk more than a couple of minutes….he cooperated. Barbie was very uncomfortable the entire time, but she didn’t want to leave. I couldn’t believe she stayed, and I regretted that she endured what she did to accompany me to receive this award. I do like taking Barbie out, but I need to make sure that going somewhere, isn’t at her expense. This one didn’t work that way.
Barbie has been glad to get back to a regular routine with the ‘electrical stimulation bicycle. One of the added benefits that occurred besides the cardio-vascular and strengthening is that spasms in her legs are almost non-existent. That helps with her comfort level. I don’t know if we will ever find a medicine to alleviate her hypersensitive skin – all we have tried so far haven’t worked at all.
Ben and Becky had a pretty busy summer, I took them canoeing and immediately discovered that was a nightmare….they both wanted to paddle and three paddling doesn’t make for much progress. Well, we had fun anyway and didn’t manage to turn the canoe over. I knew they had played around in a kayak before, and when we visited Kim this past summer Ben was fascinated with their kayak and seemed to handle it well. Well, for their Birthday I decided to buy them kayaks – got three of them actually (one for me). It was a surprise for them, they went to an overnight with my brother’s family so I was able to pick up the kayaks and hide them in the garage. The following morning I put them out on the lawn (5 am) and set up Barbie so she could see what transpired. Ben and Becky knew I was giving them something in the morning because their Birthday party (turned 9 this August) was being moved because of weather. Well, as expected they were up at 6 am to collect. I sent them out on the porch where they could see the kayaks. Barbie and I watched. The looked at them, started down the stairs and then stopped? They started talking to each other, and we were wondering what the problem was? Were they disappointed? NO…they were negotiating with each other for the color! Interestingly enough, Ben picked the red one and Becky the bright yellow one – exactly what I planned – don’t know how that happened.
We have been kayaking quite a bit since, and they have now paddled up to three miles on an outing. The three kayaks are 9.5 footers so the three of them fit in the back of my pickup, each weighs 39 pounds so they are easy enough to load and unload and portage if needed. This was much better arrangement than my 70 lb 17’ canoe, and a lot less stress on going somewhere. We are looking forward to a lot of kayaking next summer.
Every time we went somewhere where Barbie could have watched them paddle it didn’t work out, either it was too cold, hot or windy for her. She did get to see pictures of them that my brother took on their maiden voyage. She is looking forward to watching them next summer. Hopefully, it will be a better one for her to get out and do so.
My ability to have any free time this summer and to date is restricted by issues with Barbie’s PCA’s. We have another person who is working out very well she is older person, an RN that worked for several years taking care of religious personnel in a retirement setting which recently closed. We still have an opening for a part time person as Linda only wants to work 24 or 25 hours weekly. I will be filling in the hours until we find a person. If she stays we now have three people that are very dependable and relate well to Barbie and the kids. I just need to fill in that part time position its about 10-15 hours a week….but I made the decision to hire Linda over seeking some one to fill the entire shift knowing that I would have a gap. It is much better to have the dependability and qualification than not and I have learned that older applicants are just far more dependable and come with far less complications. Annamarie is filling in the first part of the missing shift until I can get someone else and I get home with Ben and Becky. Unfortunately, our other caretaker Charlene can only work a limited number of hours also.
I haven’t been able to return to any of my astronomical research that I hoped to, as since Annamarie is filling in for others she can’t do overnights. Work has also been very busy for me – I enjoy it, but it is demanding and some of the programming I need to do have become intensive.
I have very clear priorities which help me maintain my stability. Barbie, and the children are my first priority and anything that effects that priority is on the radar first, my second priority is work….need income, my third priority is trying to stay physically fit (not always easy) and then come projects unfortunately my research is close to the bottom….for all of you, the good news is that updates are pretty much at the top of my project list, right after monitoring research regarding spinal injuries – nothing out there in the immediate future (Barbie’s status isn’t going to change without intervention). Since it has been some time since I wrote one, you can imagine items 1 and 2 have kept me quite busy. I also didn’t manage to accomplish two major items this past summer – painting the house and replacing two major windows.
I need to close this out now, as I need to get busy finishing storage all our outdoor stuff…winter is soon to happen…actually snow is forecast for tomorrow morning….
I would also like to thank all you for your continued card and notes to Barbie, and for directing positive thoughts and prayers to our family. I would also like to thank all of you who visit, Barbie really enjoy the visits…and I would encourage any of you who would like to visit to do so…just contact me…electronically is best: LLA@net1plus.com we can set something up.
Happy Thanksgiving,
Len & Barbie
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