Jan's Corner 2007
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===Patient Advisory Board===
===Patient Advisory Board===
Revision as of 18:40, 29 May 2013
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Patient Advisory Board
1 December 2007
Several months ago, under the umbrella of PC Project, a number of PC patients formed a Patient Advisory Board (PAB). Each member of the PAB is a leader of a working group made up of other PCers. They share ideas through emails and on a monthly conference call. The PAB working groups, while having different specialties are quite interrelated. A good example is the Newsletter Working Group whichrecently put out the first ever newsletter produced by PC patients. They did a super job. And while the newsletter group did all the hard work, they utilized members of other working groups to help with articles. It was a perfect example of one team doing its job, but using other teams to help. After all, we really are one big team anyway.
I’m on the Patient Outreach working group with seven other PCers. Just this past month, we’ve been brainstorming and sharing ideas for the upcoming 2008 Patient Support Meeting in Scotland. We’ll present these ideas to the PAB during the conference call in January. I’m just amazed at the ideas and thoughts that are coming through. I’ve been involved with a lot of the planning of past patient meetings, but having the advice of these powerhouse PCers is incredible. They think of things I’d never think of, giving a perspective not just as PCers, but as parents, as non-English speakers, as repeat attendees and so on. They are intelligent and thoughtful planners. Our team is spread throughout the world and we communicate mostly through email. Their ideas and comments are invaluable. In a way, my group is like a big focus group that helps determine needs of PCers and their families. We have a whole list of projects, but we’re just tackling them one at a time.
There’s so much that can be done to help the PC cause. While the progress in PC research continues, I can’t begin to say how nice it is to be involved with so many other PCers who really care about all people with PC and their families. It is empowering to PC Project to have the help of so many talented people. Their greatest attribute, in my opinion, is a desire to serve. That’s the only requirement anyone really needs to be of help anyway. I hope that any PCer reading this who wants to be involved will contact PC Project and ask to join one of the patient working groups – currently the working groups are: Newsletter, Patient Outreach, Fundraising as well as a local arrangements group for the Patient Support Meetings for 2008 and 2009. At this point, it’s really not a huge time commitment, but it is a great way to be involved and feel part of things.
1 November 2007
Tomorrow we celebrate Thanksgiving here in the USA. I love the Thanksgiving season because even though I try to be thankful all year round, it’s a good reminder for me to count my blessings.
With PC Project, my many blessings come in the form of people. I am so grateful for the many PCers who have touched my life. They have given me strength, ideas and encouragement. They’ve also been great role models for my children with PC. If you are a PCer reading this, I hope you’ll know what a tremendous blessing you are to me. Because of you, I do not feel isolated or PC lonely.
I’m thankful for the scientists and physicians who graciously share their time and talents within the PC consortium. I’m thankful for their spirit of cooperation and collaboration in a competitive field. In particular, I’m thankful for the scientists close to this siRNA project that is coming closer to clinical trials. They’ve found something that has a real shot at working. I never thought I’d see the day. I’m still amazed that scientists who are so brilliant they could do successful research anywhere are dedicating their careers to finding an effective treatment for the very rare PC. If nothing even worked, I’d still be grateful because of their tremendous efforts for us PCers.
Part of my thanks concerning the upcoming clinical trial is towards three consultants not associated with our PC consortium who have volunteered their time, talents and expertise. When these professionals whom we’ve never even met realized this is an out-of- pocket expense for a rare disorder, not a pharmaceutical project, they donated all their services free of charge. There is absolutely no way this clinical trial would be at the point it’s at now, or could proceed, without these remarkable individuals continually helping this complicated process.
A little closer to home, I’m grateful to Mary’s assistant at PC Project, Holly, who is the perfect match with perfect skills for a PC Project team member. She is cheerful, happy and competent. Every time I’m around her I am impressed by her abilities and disposition. I know Mary appreciates her very much. The “office staff” at PC Project consists of Mary and Holly so that tells you how much Holly is valued. Last week, Holly went on vacation. I knew for sure she was priceless because of how much she was missed.
Finally, my greatest thanks is for Mary. I think I could just stop typing because nothing I write here will ever convey what her work and her sacrifices mean to me. If there were no PC Project, I would still have an incredible second mom who I talk with and confide in, who helps me with personal problems and cheers me on in life. She would still have my greatest thanks. Everything Mary touches in her life is successful, regardless of what it is, big or small. Mary helps many people and in so many ways. I could make lists of the organizations and people she’s helped and influenced. Mary could have chosen any cause, any project and made it just as successful as PC Project. But she chose PC. Maybe she would tell you PC chose her. Either way, I am humbled, grateful, and still overcome with emotion even after several years of watching her labor with love day after day (and night after night) to help us PCers. She does it without any thought of personal reward or gain. But even without her PC work I am thankful that I have her in my life forever.
Yes, it’s Thanksgiving time here. To all of you wonderful people in the PC world – THANK YOU!
Sometimes having a rare disease can be inconvenient
1 October 2007
Sometimes having a rare disease can be inconvenient. Last week I went to the dentist for my bi-yearly check up and cleaning. The dental hygienist is one I’ve seen before and who understands that the whiteness on my tongue is part of my PC. This time however, she was concerned because there is a place on the lower side of my tongue where the whiteness runs down the side, unlike the rest of the white areas which are basically symmetrical. The white was also a lot brighter. The hygienist didn’t say “cancer” but I’m sure that’s what she was thinking. She showed the spot to the dentist and advised me to see the oral surgeon down the hall. She even went so far to see if that office could see me when I finished my check up. My dentist was pretty sure it was just part of my regular white tongue, but again, because this white patch was different from the other parts, he said it couldn’t hurt to get it checked out.
So after my dental appointment, I went down the hall to the oral surgeon’s office. I, too, was quite sure the white streak was just part of my regular white tongue. I feel like I’m well educated about PC, but honestly, I’d never really looked at that lower side of my tongue before. I couldn’t say whether that unusual white part had always been there or if it was new. As I sat in the waiting room, I stewed about whether or not I should just walk out, especially since this oral surgeon didn’t accept my insurance and the visit would cost me $50.00. But then I didn’t want to be stupid and ignore something that could be a potential problem. I finally decided peace of mind was worth it.
I had to first explain to the oral surgeon all about PC and my tongue. At first he thought I was there because of the whiteness on my tongue because he started telling me different ways to possibly get rid of it, although he did tell me it would probably just grow back. I knew he must be pretty knowledgeable because he even called it Leukoplakia. [IMPORTANT - the correct name of this PC condition is leukokeratosis and not leukoplakia. As leukoplakia can be pre-cancerous and leukokeeratosis is not, knowing the correct term is important for PCers in speaking with medical professionals. Editor]. I quickly assured him I wasn’t there to try to get rid of it – that he just needed to look at the funny white streak and tell me if it looked like the rest of my tongue or if it was something I should be concerned about. The doctor determined quickly that it was just part of my PC. He did want to measure it and take a picture of it. He also said to watch it and that I could come back in six weeks as a follow up. But I think we both knew I wouldn’t be back.
It’s okay. I paid my bill. I told Dave about it at over dinner that evening. Before I even told him I decided to pay for peace of mind, Dave said it was better to pay and know for sure it wasn’t cancer or something, than not know and wonder, especially if it had been something more than it was. Sam piped in on the conversation and reminded us that once he had been told by another dental hygienist that he was biting his checks and tongue and therefore causing the white stuff in his mouth.
And that’s what I mean about it being inconvenient having a rare disease. I know a lot. But I still don’t know everything. And I know more than most. I often find talking with others about PC that we don’t know what’s always natural because we’re not dealing with “natural” things in the first place. We have to learn first what’s “natural” for PC and then help others learn. And for me, even when I think I know everything, I still find I’m learning.
7 September 2007
A few weeks ago, for no reason I could fathom, the calluses on my feet changed physically. The temperatures were cooler than they’ve been, the kids were back in school and I should have been in a good place with my PC. However, for about two weeks, typically somewhat dry calluses turned mushy, leaving open parts all over them. I could actually look down into the calluses and see this raw layer of skin – or something – beneath the pieces of the calluses. I don’t know if what I’m describing makes sense because it’s such an unusual occurrence for me. For those two weeks, I called them my “pregnancy feet” because that’s how my calluses became each time I was pregnant. Fortunately, last week they began to dry up again over several days and I am now back to my PC normal.
The thing that made the physical change in my calluses so difficult for me is the changes were accompanied by incredible pain – the “crazy pain.” Sure, I deal with pain all the time, as do most PCers. It was just interesting to me how I felt when I was dealing with increased, more intense pain for those two weeks. I found my motivation to accomplish things was a lot lower. All I wanted to do was put my feet up and do mindless things. Household chores became burdensome. I chose to make the easiest meals possible. I had zero desire to run errands and I only did so if absolutely necessary. The thought of even putting on socks was unbearable. Because life doesn’t care if you are in pain or not, I still had to bully my way through the pain and get certain things done, but I truly did the bare minimum.
I realized, too, that I had to watch myself and still be kind to my family members. Just because I hurt like crazy didn’t give me license to be grouchy to my innocent kids. (As for Dave, it’s impossible to be grouchy at him, because he’s so good to me.) I was paranoid about anyone getting near my feet for fear they would touch them. I was also extra tired because I didn’t sleep well at nights. I wonder, too, if dealing with intense pain affects fatigue levels. Finally, I found that I was getting discouraged and even a bit depressed, especially after the first week. Even though my motivation was low, I still had a mind that wanted to do things and I felt frustrated and helpless.
Like I said, I’m fine now. But the experience made me thoughtful about how I deal with extra bad pain. I’m no champion, that’s for sure. In hindsight, would I have done anything different? I don’t know. When the body and the pain take over like that, I felt like all I could do was cope. I lived more reactively than proactively during that time. That’s not the most fulfilling way to live, in my opinion. I only hope now, after this short-term extreme pain experience, that I will be more compassionate to others who deal with trials, whether they are PC-related or not. And, I certainly hope I will be empathetic, not judgmental, about the way people react to their situations.
1 August 2007
A few nights ago, the extraordinary singer Josh Groban came to town. To explain how much I enjoy his voice, if he sang “Twinkle, Twinkle Little Star” I’m sure it would sound like a masterpiece. So to hear that voice live…well, the day concert tickets went on sale I was ready to secure my spot in the arena. That said, I thought I’d take you through just one event in my life and how it was affected by my PC.
The first part of the event was pain-free. Thanks to the internet, getting the concert tickets was easy.
The day of the show, I’d been pretty busy. So when Dave came home from work, just before I was to be picked up by my concert buddies, he found me lying on my stomach across the bed with my feet sticking up in the air. I was hoping those five or ten minutes with my feet up might earn me some extra walking or standing time later that evening. I also took three “preventative” pain pills.
I probably would have dressed up a little nicer, but since my most comfortable shoes for walking and standing are very casual looking, I elected to wear jeans. I’m sure Josh didn’t mind. I just wanted to explain that it’s the shoes that dictate what clothes I wear – not the opposite.
The sold-out show meant lots and lots of people. I paid extra to get us into a close parking lot. (It was worth every penny.) Still, the walk – and the line into the doors - in 95 degree temperature - was long. By the time we got into the arena, my three pain pills didn’t seem to be working. That’s okay. It was all very exciting and my hot, sweaty feet were just an annoyance I chose to block out.
Our seats were really great. Right on the side, very close to the stage, and only 18 rows up. I was glad to be in the stadium type seats. There were floor seats but as a PCer, I would never want floor seats unless I was on the front row because everyone stands pretty much the whole time at about every concert I’ve ever been to. And at this concert, towards the end, the whole floor pretty much crowded the stage, so I wouldn’t have wanted even front row seats there anyway. I wonder if only a PCer would look at floor seats and feel grateful to not be in them.
The opening show was fantastic. And we all sat. Which was good, because once Josh Groban came on stage for his show, we stood a whole lot more. It was also announced that they had chosen our concert to be the one filmed for a DVD, which made the audience extra hyped. Every time Josh came up on the platform close to our half of the stage, our whole side stood and screamed. Ah, the fun of a concert! I could be this guy’s mother, but even at my age, I’ll cheer for anyone that can sing like that.
Then of course, there were lots of other antics, performances and effects to stand and clap for. By the time we reached some of the encores, I was reaching in my pocket to grab a few more pain pills – based on a vague thought in my mind that I might need them just to make it back to the car. I was also leaning on my upright seat instead of fully standing. But I didn’t mind. I would’ve stayed there all night, just to hear that voice.
When Josh Groban left the stage for good, I finally really thought about my feet. But I was still too excited to care. As soon as we reached the car, my shoes and socks were off and I was rubbing and scratching like crazy, all the while enjoying the rush of exclamations with the others about the incredible performance we’d seen.
The next day was one in which I felt truly blessed not to have to go to work or to school. My feet burned all day. I took some pain pills later that afternoon just to run some simple errands and to get my children places. The day after that, my feet were still on fire. They finally started feeling back to their PC “normal” the following day although they were still mushy and tender.
Okay, so the concert was a two-day commitment. I hadn’t expected that cost. But looking back, I have no regrets. I made a planned choice to participate and enjoy something. My whole life is full of those choices - some on a grander scale than others, and some more spontaneous. Not all events would be worth it. Some I choose to skip. Especially because I have a family to care for, I really can’t do things on a regular basis that will cause even a day’s worth of ramifications. But in this case, I chose the extra pain. The exhilarating sound of Josh Groban’s voice in my ears was enough to sooth the pain in my feet.
After all, we're family.
1 July 2007
Several months ago, I took my boys with PC - Sam and Nate - to our dermatologist for some problems about their PC. Spencer, who is 7 years old and who doesn't have PC, came along. Sam and Nate got a lot of attention from the doctor as she thoroughly examined their skin. She is caring and loving and Spencer watched this examination for some time.
Then Spencer came up to me and whispered, "Can the doctor look at my skin too?" I just smiled. Fortunately for us, this nice doctor caught on quickly and kindly looked at Spencer's skin. Spencer does have eczema that we work to keep under control and so the doctor was able to take a real look.
That experience was a reminder to me that our children without PC need attention too. Typically, we tend to focus on the infected nails, the blisters that need popping or bandaging, the trimming. We try not to make a big deal of it all at home, but obviously, we have to care for the PC and it is a part of our lives. The important thing is for me to remember that Spencer needs to feel a part of things too - especially in a family such as ours where he is the only one without PC.
There are times when I may be talking with Sam and Nate about PC and how hard it may be at the time, perhaps because of weather or something, and Spencer will pipe up with how his toe hurts or how his eczema hurts. The others will say, “Oh yours doesn't hurt like ours does.” But I know as a parent, Spencer's feelings are just as important. The others get attention because of PC that he doesn't get.
In some ways, it's kind of funny - when Spencer was younger, Sam and Nate would ask why he didn't have PC. They wished their nails were more like Spencer's and dad's nails. They wished they had feet like Spencer's too. PC Project has really changed how Sam and Nate feel about their PC. Sometimes now it seems like Spencer is the odd one out.
PC is a big part of our lives, particularly because our family is so involved with PC project. The kids see me working on my laptop at home, often answering patient emails. They hear me talking with the director, Mary (grandma) often on the phone. They know I go into the PC Project offices. They've seen projects, especially for the patient meetings, laid out on the living room floor. They've participated in many of those patient meetings. All of my children have been involved at some point or another. We talk about current research and other PC Project topics at our dinner table. We might be a more extreme family when it comes to PC topics simply because of who we are and Spencer is part of it all.
At the same time, nothing will change the fact that Sam and Nate really would like to be like Spencer and not have PC. I have to be careful because when Sam and Nate are really hurting, it's easy for me to ask Spencer to do the running. I have to be sure that chores are spread out evenly. For example, if I know it's a bad feet day, I try to subtly give Spencer chores that may involve more of the walking - like taking the garbage out, for instance. But it still has to be fair. He's never complained, but I don't ever want him to resent Sam and Nate because he has to do more, or because he has it harder and they get off easy because of their pain.
The reality is they do have more pain than Spencer. I just have to be sure and treat them all my children fairly. Some days, one may get more attention than the other because of different needs and circumstances, but as long as it given consistently to all, over all, that's okay. They shouldn't have more or less love and attention because of their sore feet, lack of sore feet, or for any other reason. They all get it because they are my children - no other reason.
At the same time, Spencer is learning compassion for his siblings. He's becoming more sensitive to hurting feet. I've heard him often jump up and say, "Here, I'll get that for you!" He may be the youngest in the family, but he knows he can still serve his older brothers. Recently, Nate and Spencer were playing with each by the river at the family cabin. They had wandered along the river quite a distance away. I was watching out a window and I wondered about Nate, whom I knew had pretty sore feet that day. But then I saw Spencer, who is much smaller than Nate, piggybacking Nate back to the cabin. I can't imagine, knowing Nate, that he asked Spencer to carry him. Knowing Spencer, I'm sure he volunteered. I can't tell you what that did inside my heart to see little Spencer carrying Nate. The most important thing, regardless of PC, is that we have each other and we love each other. After all, we're family.
Patient Support Meeting
1 June 2007
We recently held our Patient Support Meeting in Park City, Utah. We had 46 PCers attend, plus their family members, as well as a dozen doctors and scientists (for a total of about 130 people). It was our largest gathering ever. Our constantly growing PC Project does seem to translate into larger numbers at these meetings and we’re adjusting as we go. For example, this is the first meeting where we’ve needed two separate children’s tracks (with a younger track for those six and under).
Because of our growth, every patient meeting is new, different than the previous one. It seems we are constantly evolving. Each meeting has its own flavor, I’m sure, based on the mix of personalities. Yet in many ways, each patient meeting is the same. It is the same connecting of people who may have nothing else in common except they understand each other in ways no one else on earth can.
The best part for me at this past meeting was seeing PCers from previous meetings and meeting new people. When I saw PCers I’d met before, even two years ago, it felt like I was with good friends I’d been with only yesterday. I love the reunion feel of a patient support meeting. Then there’s the wonderful opportunity of meeting new people. I love meeting those I’ve communicated with either by phone or email because I feel like I already know them. I love finally putting a face with the name. I feel connected immediately.
At this past meeting, as at all patient meetings, I am always impressed at what people with PC are doing with their lives, how they are coping, how they are succeeding. I am amazed at the scope of careers PCers have. I see how parents are raising their children. I see how PCers manage each day. You inspire me and teach me.
So thanks to everyone who participated in this past patient meeting. I’m a better person for having been with you!
1 May 2007
At the first of this May, Mary and I went to Los Angeles to host the fourth annual International Pachyonychia Congenita Consortium (IPCC) meeting. We typically hold it in conjunction with the annual SID (Society of Investigative Dermatology) meeting, usually the day before the SID meetings officially begin.
The decision to have an annual IPCC meeting was made at the very first symposium in Park City when scientists first gathered to discuss PC research. It is a way of staying in touch - in person - even though our consortium members, especially the primary researchers, are in touch weekly, even daily sometimes. But, because our scientists are spread throughout the world, it's an excellent opportunity to come together once a year, learn and be connected to the latest findings. Scientists give presentations on what they've accomplished, discovered, etc. and then the group discusses and makes research decisions for the upcoming year. I've been very blessed because of my role with PC Project to be a hostess for PC Project at these meetings. Scientific meetings are typically not for patients. These are some of my non-scientific observations about this latest IPCC meeting:
Observation #1 - This time, like every time, I'm amazed the scientists came. They take extra time and costs to come a day early to the SID meetings in order to attend our meeting. Some come only for our IPCC meeting. They come from all over the United States, and the world too - Scotland, Singapore, China. Mary and I got a few chuckles when Mary received calls from anxious secretaries who wanted to be sure the scientists or doctors they worked for would be allowed to attend. We're thrilled to have these scientists attend and it's hard to imagine them asking 'is it okay?' As this IPCC meeting asked for pre-registration, I thought it interesting that scientists wanted to be sure to be included. PC Project gave a travel stipend to each registered person who attended and offered the option to return it as a donation. Almost all returned the stipend to PC Project. What it is about this PC consortium that is drawing the attention of big names (and great minds) in research? What is it about this group that makes people so generous with time and resources?
Observation #2 - Although we required pre-registration for this IPCC meeting, many (about 30), who were attending the SID meeting and were not registered for the IPCC, came and sat in the back at the IPCC. We always set up the conference room in a large U-shape to promote discussion after the presentations. There is an assigned seat for everyone. But in the back this time, every extra chair was filled, people were standing against the walls, and the hotel people kept bringing in more chairs. I've never seen anything like that at one of our IPCC meetings before. I can only guess that maybe they read the main SID program which announces our PC meeting as an ancillary meeting. Then, after reading who was presenting, they wanted to come and hear these incredible scientists. We do have some impressive names on our team. My other thought is maybe PC research really is vaild. Maybe we do have something. We think so. Maybe others are starting to think so, too.
Observation #3 - PC is becoming more familiar among dermatology scientists. The SID meetings officially began the day after our IPCC meeting. Part of those meetings include oral presentations and poster presentations. At certain times, the author of the poster is available to discuss the research while other scientists who are interested can seek them out. They are given the opportunity to talk about the research presented. It seems to me to be a great opportunity to exchange ideas and learning and to generate interest. It's quite an experience for me to walk up and down the rows of 1000 or more posters and scientists. The thing I found most fascinating was to hear other scientists refer to what they called "PC Row." There were so many posters that included the word, "Pachyonychia." I'm not naive. The world of skin-related research is enormous. But I think three years ago, there would never have been a "PC Row" at a meeting such as the SID where thousands of scientists participate. I am incredibly grateful for what scientists are doing to help us when we are such a rare disorder.
1 April 2007
When I wrote last month, I never dreamed of the changes in my children that would come so quickly. Almost overnight, Nate's feet turned terribly bad - blisters everywhere that need popping several times a day. The blisters were extensions of his regular calluses and turned his feet into a raw, mushy, painful mess.
I thought maybe the warmer spring weather might have affected Nate, but since Sam was actually walking much better, I couldn't totally attribute Nate's problems to that. There were also no noticeable changes in his lifestyle, no new shoes, shoes, nothing. Nate limped terribly and it broked my heart to see him in so much pain. This is the worst I have ever seen his feet. For the first time ever, I watched as he sidelined himself from activities he loves. I also hated the hopeless feeling I had because everything I was trying wasn't working (and I was trying everything I could think of!) and his feet remained in awful shape.
Nate's feet showed no obvious signs of infection - no redness around the blisters or red streaks in the skin, no thick, colored pus. (The fluid from the blisters was always clear and we tried to keep needles sterile and the blisters clean.) However, because I was feelings so helpless, I made an appointment with Dr. Leachman, our family dermatologist to have a look at Nate's feet. I wasn't sure what she could do because I could see no obvious infection, but I was out of ideas.
But then, I was almost embarrassed when we went to the doctor's because Nate had been home from school for a few days and the mushy blisters were starting to dry up. I was starting to wonder if it was a wasted trip. Fortunatedly, it was the best decision of all. Dr. Leachman saw signs I didn't see. See also took some cultures of his feet. As it turned out, Nate had two different strains of infection in his feet. The infections might not have been obvious to me, but they were there, causing havoc.
This totally knocked out my belief that an infection is only manifested by redness and colored, stinky pus. Nate definitely needed an antibiotic to get his feet under control. Within a week, his feet looked much better - back to his "normal" calluses. He was even walking again without the terrible limp he'd been walking with for the past several weeks.
Interestingly enough, Sam was walking around quite well. My boys really did switch places in the way PC was affecting them. Another thing, though Sam's feet had been doing really well, he did have a toe that was red. I couldn't tell for sure if the original problem was with the nail or the skin around it but they both areas looked bad and there was some pus in the thin layer of skin surrounding it. It was such a small spot, I wondered if it was worth a trip to the doctor. But I figured since Dr. Leachman was seeing Nate, I might as well make an appointment for Sam at the same time. It was a good thing I did because Dr. Leachman took one look at Sam and pronounced he needed an antibioitic too. This one was red and it was close to the bone. She explained once again, the importance of not messing around with infections.
You know, I often think because I have PC that I know quite a bit. This experience has taught me that I'm still learning. I also still need the help of a doctor on occasion, and I should never feel badly about taking my kids in and trying to get the best help for them. I also need to remember that regardless of what I see with my eyes, and whether or not what I see fits with my current knowledge, my mother's intuition is often the best "advice" to follow - even if it means getting help above and beyond what I can give.
Comparing with Others
1 March 2007
As you know, two of my three sons have PC. That means they have the exact mutation so you would think all of their symptoms would be exactly alike. However, it’s interesting to me how differently PC affects each of them – especially in regard to pain.
Nate, who is now 10, walks around like he has no pain. At the end of a very busy day, especially if he’s worn boots or shoes all day, his feet will hurt and feel hot – and he doesn’t like that feeling – but he’s still okay. Nate is also playing football during recess at school and snowboarding every weekend.
Sam on the other hand, who is 12, can barely make it through school on his feet. He comes in the door at the end of the day and falls to his knees in pain. He does walk quite a bit in his regular day and he doesn’t stop doing what he needs to do because of his feet, but he is clearly in agony when he gets home. It’s not a rare thing for Sam to look absolutely fine around other people, and then when we’re all alone, he’ll drop. For example, if I pick him up from school, he’ll be with other kids, talking and smiling. Then the second he’s inside the car and the door is shut, he is groaning from pain and pulling his shoes off as quickly as he can.
Sam also is my boy who seems extra sensitive to the heat. He often wears sandals in the winter or at the very least some kind of canvas shoe that is cool and breathable. Nate, on the other hand, can wear closed in shoes or boots in the wintertime and be all right. I’ve observed this same thing in other PC families I’ve met – siblings with the same mutation and one walks more or less than the others. It does not mean one child is “tougher” than another. I understand that although we have the same mutation in our family, as individuals, we have modifier genes, other genes that affect the way PC and the associated pain manifests itself.
For our own little PC family, we have learned not to compare with one another. No one can say mine hurts more, or we are the same so that means you must be faking it. Also, though Nate seems to be doing better than Sam right now, these roles have been reversed in the past. Who knows how they’ll each do when the weather gets warmer? I’ve also learned that kids will be kids and nothing will stop them from doing what they want to do. So if a child falls to his knees in pain when he thinks no one is looking, you know the pain is real. Each child must be supported and his pain be taken at face value.
1 February 2007
Today I’m feeling a bit frustrated. Two days ago I did a lot of fun activities with about 15 small children. Since I was in a carpeted area, and my feet were sore (as usual), I simply walked around on my knees for a couple hours. I guess it’s a sign that I’m getting older because I used to be able to walk on my knees any time I wanted to and for as long as I wanted and my knees would be just fine. But now, two days after my fun adventure, my knees are still very sore. When I’m going to do things like that, I try to use my knee pads, but this day, I got too involved and simply forgot to put them on. And now I’m paying for it.
Today – and yesterday - my feet are sore, but that’s to be expected. After all, I do have PC. But when my knees are sore AND my feet are sore, it really gets in the way of doing things I’d like to do. For example, my upstairs carpets really need to be steam vacuumed. My plan was to do that yesterday. The machine is very heavy – so I only steam-vac on my knees so I can muscle the big apparatus around without hurting my feet. And it’s fine to do it on my knees -unless I’m careless and “walk” on my knees too long without using my knee pads.
I’m not really complaining. For one thing, my bathrooms are clean, my hardwood floors are mopped, and most of the house is vacuumed. And I do have nice children who are capable of doing things too. And I could steam vacuum if I really wanted to – I could grit my way through the pain. But I’m not sure it’s worth ruining my knees. I guess I’m writing about this because I just hate it when I want to get things done – on MY time – and my body says “no thanks.” It’s that way often with PC feet too.
But, I do know from experience that in a few days, my knees will be back to normal. I’ll put those knee pads on – just in time to mop the floor and scrub the bathtub out because it will be time to do those things again too. And maybe I’ll even get those carpets deep-cleaned.
Happy New Year 2007!
1 January 2007
Happy New Year! When I write a Jan’s Corner, I try to write about what’s on my mind in my PC life. My most overwhelming thought right now is that of incredible gratitude to the people who are working so hard for PC Project and PC research. I wish I could somehow convey to all of those with PC the things that go on behind the scenes at PC Project. Most people see only this website. I’m not sure many people have a clue about the hours, costs and sacrifices that are made by really just a few individuals who have dedicated their lives to finding a successful therapeutic for PC. It amazes me how much they care and I am thankful beyond what any words in this Corner can express.
PC Project’s mission statement is “To find a cure for PC.” Knowing that, I am even MORE grateful for all the optional things PC Project has done to bless my life and the lives of my two children who have PC, such as:
A booklet just for patients Access to consultations with a highly qualified medical doctor An informative website with a patient message board Brochures to give to teachers and health professionals Free genetic testing Periodic emails and newsletters for me as a patient, and of course Patient Support Meetings both in Europe and North America.
I have only mentioned a few of the extra things PC Project provides for me, but those things have changed my life forever and the lives of my children. We are all better educated (and we’ve educated those around us), we know better how to cope both physical and emotionally, and we don’t feel so alone in the world.
None of those extra things are needed in order to find a cure for PC. They are all provided for by by just a few PC Project volunteers apart from the funds that go directly to research. Beyond the cost of these 'extras,' is the time spent in making and answering phone calls, writing emails and letters, designing and executing every brochure, newsletter, blood kit packet, planning the patient meetings and so on. It’s all a labor of love to help make the lives of PCers better while a valid treatment is being developed.
I feel so grateful for all the extra things done on my behalf as a PC patient. In addition, I’ve not even touched on the time, time, time and enormous costs involved in the research process. There are people involved there who have truly given us their hearts. In return, I start the year 2007 in giving them all my own thankful heart!