aging with cerebral palsy

Kris had her cast removed on Jan. 30th (24 days after surgery.) Attached are six pictures showing the affected areas. and the new walking cast. Kris will write a post telling of this recent doctor visit.  Kris’ Dad.

UPDATE!

Hello all. I went to the doctor on Friday the 30th and had my stitches removed. It was pretty painful as my skin started growing over the stitches and had to be dug out. It wasn’t pretty and poor hubby almost fainted. These pics look worse in some ways than my first pics after one week. I posted those a couple of weeks ago. The long incision on the side of my foot doesn’t look as though it will scar well. The doc was again pleased by the results in my recovery thus far and saw fit to put me in a FWB cast for the next three weeks. I hate my new cast and find walking to be cumbersome and painful. My pain is concentrated mainly in my heel where they excised some bone, but also there is some pain along the Achilles incision. Walking with this cast has proved more exhaustive than using my crutches so I take lots of small breaks. Overall, all is going well and I am progressing faster than was expected. Hope you are all well and recovering easily and painlessly. Take care,

Kris

Here are pictures of the surgery performed on 6 January 2009, which included a calcaneal ostectomy, toe flecor releases (five toes), Equinus (foot drop) correction, Achilles debridement, and FHL transfer

Hello all,

I hope I am doing this right and this will appear on my recovery time-line. I know that my dad sent some updates to all of you regarding my surgery. He is a real sweetheart. The days leading up to the surgery were more anxiety filled for me than the actual day of surgery. We arrived at 11:30am on the 6th and I was admitted rather quickly. I felt calm and resigned to what ever fate awaited me. A nurse came in to start an IV and blew out the vein on my right hand, lovely, but fortunately she had better luck on my left. I sat around with my husband and parents for awhile until they took me back for my nerve block. I was nervous about this procedure but was assured of a lovely cocktail before hand. The nerve block reminded me of the two emgs I had had previously that after each, I’d sworn never to have another. It was unpleasant but not unbearable. I didn’t reach the surgery suite until around two, remember being splayed out as if on a cross, and then nothing. I woke up in recovery feeling pain, again, not unbearable, but still only tolerable. The doctor preformed a debridment of the achilles tendon, and an FHL transfer. My husband and parents were told that the achilles was in such bad shape that it was like scraping away bark from a tree. Instead of just the long  and short toe flexor releases, he did all five toes and also a calcaneal osteoectomy(SP?). He did another incision to correct something else but I am not sure of what. The Dr. explained everything to my family and to me as well but I don’t remember much. My father may add to my account of these events. I was scheduled to stay overnight but ended up staying for two night because we were unable to get the pain under control. I was glad to finally get home to my familiar surroundings but soon learned of the enormous dependence I  would have on others.It is amazing however, the ways we can find to adapt to new realities. My family, especially mom and dad, and my husband have been incredibly patient and supportive of me during this long and often frustrating journey. I had close friends who formed prayer groups for me through my surgery and recovery. Well wishes from so many friends and family, those both close and far away. It is this network of love and support that so speeds and eases the recovery process and I hope you all have such a network. I am so relieved to be on this side of my surgery and know that though the road may be long, the end result will be well worth the bumpy road I’ve traveled. Sorry if I got a bit sappy, must be the percocet. Next friday we go to have this splint removed and a permanent cast put on for another six weeks. I have taken some pictures of  my foot/leg pre-surgery and will post them together with follow-up pictures, that is if I can figure out how. He, He. Hope you are all well. Thank you all again for being so supportive and helpful. This site has truly been a Godsend for me and my family.

Be well, Kris

May you all a Happy New Year, and to those still healing, keep the faith. I am six days from surgery and am feeling anxious. I have not suffered the rupture most of you have experienced but rather, a grose degeneration of my achilles, toe flexors, and general ankle/foot deterioration. I look forward to my surgery with great excuberence as I know that the end result for me may be life-changing. This site and it’s parcipitants have been of great comfort and guidance for me and I thank all of you. Sharing your stories has given me the strength to persue surgeries not before available to me, but that I can now tack advantage of and hopefully benefit from. Things can’t get much worse for me except for the shadow of a wheelchair. I guess we’ll see if I have the strength to over-shadowing that shadow. You are a bunch of really cool people and I’m glad I found you. You’re tough, positive, and resilient, I like that. So, Good health, much love, and laughter to you all this New Year.

 

Hi folks,

Glad to see you all here. I have learned so much from all of you through your various stories and experiences. I hope you continue to share your stories here. My story is perhaps a bit different from others, but I still feel a sense of connection with you all. I guess surgery can be an equalizer. Ha, Ha. My husband and I are going to watch our oldest son play tonight at a well-known coffee house. John, our son plays jazz guitar and his friend Jared plays base. They are headlining tonight as the owner heard them play several times and really liked them. My husband and I always get nervous when going to watch him play. We have this irrational fear that he will drop his guitar, for get a song or who knows what! LOL He always plays beautifully though. I will let you know how it all went. Bill, good luck with that omelet, make Julia proud. Have a good night.

Kris

 

Hi,my name is Kris.

I was born in 1966, the youngest of five children. When I was nearly a year old my father noticed that when I crawled I kicked my left leg out to the side. They took me to the Doctor, tests were performed scans were taken and I was later diagnosed with Cerebral Palsy. My “type” of CP was Spastic Hemiplegia, meaning affecting one side with tight, rigid, or jerky musles. You can visit the website at www.ucp.org to learn more. I was placed in double braces, the old leather and metal ones with a bar between the legs, and my parents were given theraputic exercises to try to train my bones to grow correctly. Thankfully, I have no memory of this period in my life, but I imagine it must have been terribly hard on my family. When I could walk, I was placed in one brace, the left leg, and made to wear orthopedic shoes special ordered from Bakers. There were no pretty shoes or sandals and no going barefoot in my foreseeable future. My childhood however, played out sweetly. I had a wonderful, loving family who treated me like I could do anything I put my mind to and for the most part that is exactly what I did. I had achilles lengthening surgery when I was seven and after that wore my brace to bed for one year. At age eight, I got my first experience of going barefoot in my yards dew-laden grass. What a day that was, exquisite. Life for me after that period went great. I did not excel at sports because of balance and coordination problems, but found other things to fill my days. When I was twelve I actually started taking dance lessons, tap, jazz, and ballet. I found soon enough that dance was a wonderful outlet for me and while I still had some issues with balance and coordination, I had become a master at the art of compensation. I had learned over the years how to appear normal by altering the way I moved. So dance I did for five years and at the age of 18yrs, my parents sent me full of hopes and dreams for broadway, to a summer course at the Philadelphia College of The Performing Arts. I spent several weeks there with other dancers and knew that my destiny was not Broadway. It was not the CP, it was that I realized that I could not and would not eat, sleep, and live dance. I graduated high school with less than stellar grades, attended county college briefly, and at 19yrs, married my best friend. Six months into our marriage I was diagnosed with multiple sclerosis. I had lost control of the right side of my body, motor control, ambulatory problems. I was like Igor, dragging my leg, the right one this time. I handled things well I think, but lets face it, I was screwed medically. Two major diseases and the resultant illnesses that manifested in the wake of said diseases. Truth is, during that time I suffered a near deadly bout with double pnuemonia, a stroke, and the appearence of new symptoms that stemmed from the non-progressive Cerebral Palsy. Those symptoms began only mildly some ten years ago now I am 42yrs old and can barely walk. I went to visit my current Dr. and expected him to repeat what I have heard in the past. He instead said I think I can help you. This is what he is going to do. Achilles Debridement, FHL transfer, long and short toe flexor release, and and calcaneal ostectomy.  I invite people who are like me, struggling with new problems as I age that are directly related to a medical condition, Cerebral Palsy, that is considered non-progressive. Doctors no very little to nothing about this problem. One of my CP friends said that her doctor said that 15 to 20 yrs ago this wasn’t an issue because people like us didn’t live long enough to see these problems. I guess we shouldn’t have to nerve to live so long.

Thanks,

Kris

 

 

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