PLEASE READ MY BIO BELOW!!!! I couldn't explain my life in this short bio!!
I am a 58-year-old wife, mother, and grandma who was diagnosed with PD and Dystonia at age 45. This disease has been devastating. I have had some very rough times. At diagnosis, I was in and out of the hospital because my stomach could not tolerate the PD meds. I was vomiting constantly and lost 35 pounds in one year. My neuro was waiting for Stalevo to become available. I got the drug immediately, & I finally started feeling better. Then we waited for Azilect to become available, and I started that drug also. The Dystonia caused severe pain all over my body. In 2009, I fell and fractured my pelvis, I fell again and severely sprained my ankle and knee, so I have to use a wheeled walker now. I was diagnosed with bursitis & osteoporosis in my right hip which is so painful that I have to get cortisone shots once a month. I was also diagnosed with a B12 deficiency, an under active thyroid, and arthritis. I began having severe back pain to the point that I had trouble breathing for 3 hrs in the morning. I had MRI’s done on my entire back. They found 3 cysts that are intertwined in my spine, several bulging and deteriorated discs, and half of my tailbone is missing. I saw 2 back neurosurgeons who both said surgery was too dangerous. I was put in a metal back brace, which helped a bit, but then my husband & I invested in a Sleep Number Bed. Since we got the bed, I have had little back pain. In April 2010, I was told my PD was moving to my left side. I could feel myself becoming weaker to the point that I couldn’t stand up on my own. I told my neuro that I was desperate for help, so he suggested a physical therapy program called “LSVT BIG & LOUD.” It was specifically designed for PD patients over a 20 year period. I got into the program on 6/7/10. I was told it was VERY intense and VERY painful. It is a 4-week program--4 days a week--2 hours each visit. They push you to the max; but my physical therapist told me that at the end of this program, he WOULD have me walking WITHOUT my walker, he WOULD have me walking balanced and properly, he WOULD have me writing again, which I wasn’t able to do, & he WOULD have me going up & down stairs. EVERY exercise in this program is built around movements that you need to do on a daily basis to do daily tasks that everyone else does--concentrating on doing them SAFELY, PROPERLY & BALANCED. There are wrist exercises, writing exercises, mouth exercises, and voice exercises. Believe it or not, he took this stiff, barely moving, homebound body, & I was doing EVERYTHING he told me I would be doing! But, I MUST keep doing these exercises every morning and evening or I will regress. Believe me when I tell you that this program has given me a life back. I felt like a caged bird that had been set free! This program is truly AMAZING!!!
11/2010 UPDATE—Didn’t know that when you work out so hard, YOU CAN TEAR THE MENISCUS IN YOUR KNEES!!!!! Found that out when I TORE THE MENISCUS IN BOTH MY KNEES. in October 2010. I had to have arthroscopic knee surgery on both knees on 11/3/10. Unfortunately, I had to stop doing quite a few of my LSVT exercises which made me want to cry. It was such hard work.
9/2011 ANOTHER MAJOR SETBACK—I had surgery on my right hand (and I am right handed) for “trigger finger.” It was supposed to be a simple 15 minute procedure that would remove the cyst causing my fingers to curl up, and my hand would be back to normal. Well, the surgery did not go well. My doctor was inexperienced with doing surgery on neurological patients. I am now seeing a well-known hand specialist who said that because I did not have any physical therapy after my surgery, my fingers, which are closed up again, swollen, in pain, and deformed, will unfortunately be that way permanently which has devastated me. I have to wear a metal splint at night and as much as I can during the day which makes my hand and fingers straighten out. But as soon as I take it off, my fingers curl up again and I only have the use of my index finger and thumb. This put me into a very deep depression.
9/2012 UPDATE—I am just now accepting and adjusting to the way my right hand is. It has been a year since that devastating surgery. I have limited strength and function. It has been a very painful, hard adjustment. With my right and in the metal splint most of the day, I feel like I lost my right hand.
9/2012 BIG, BIG SETBACK—Now my Parkinson’s is in progression. I’m having “wearing off” times a lot which is bringing on a lot more stiffness and weakness. My doctor said that there is a new drug coming out in January 2013 called RYTARY-an extended release carbidopa/levodopa (which he was involved with the study). That will replace my Stalevo, which I have been on for almost 8 years. He really feels Rytary will help me get back on track. So, I am waiting, hoping this new drug will help because I don’t have a lot of good days right now, which scares the **** out of me.
5/10/13 UPDATE!!— TORE THE MENISCUS IN MY RT. KNEE FOR THE SECOND TIME, and had to have arthroscopic surgery to repair it. For someone who is SO INACTIVE, I don't understand how it happened again!!
8/15/13 UPDATE —WELL, UNBELIEVABLE NEWS. I TORE THE MENISCUS IN MY RIGHT KNEE FOR THE THIRD TIME!!! HAD SURGERY AGAIN!!!
11/20/13 UPDATE—WELL, I MAY AS WELL KEEP ON GOING. I TORE THE MENISCUS IN MY RT. KNEE AND HAD SURGERY AGAIN. THAT MAKES IT THE 4TH TIME.
2/16/14 UPDATE— WORST THING SO FAR!!--I FELL, FRACTURED MY RT. RIB, WHICH PUNCTURED MY RIGHT LUNG, AND MY LUNG COLLAPSED. Talk about pain. I got to the hospital and I've never seen so many doctors and nurses move so fast. They had to insert a chest tube in me to get my lung to re-inflate and they did that in the emergency room!! Then, I was supposed to go to ICU, but they had no beds; so the medical staff had to turn a section of the emergency room into an ICU room. It was like a whirlwind; but came home after 6 days to rehab at home
4/21/14 UPDATE— Was supposed to start rehab from collapsed lung but before I got started, I TORE MY RT KNEE MENISCUS FOR THE 5TH TIME AND WENT THROUGH MY 5TH SURGERY!!! SOMEONE UPSTAIRS THINKS I HAVE'NT HAD ENOUGH YET. PLEASE MAKE IT STOP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
6/21/14 UPDATE—FINALLY! Back home doing LSVT exercises with the same therapist I had before to gain the strength back as much as I can after my lung collapse and 5th knee surgery. I have become so weak that I had to get a wheelchair. So requested to start LSVT therapy because I have had such great results in the past. I am 56 and I REFUSE to stay in a wheelchair. My therapist will have me walking like he did before. I WILL NOT take another step down to this unrelenting Disease!
6/23/14 UPDATE— I BET YOU CAN'T WAIT TO HEAR WHAT HAPPENED TO ME NOW. I FELL ON TUESDAY AND BROKE MY RIGHT WRIST! Man, that really hurt. I took pain meds four 4 days straight and around the clock. I didn't even need to take them that long when I had my knee surgeries. The problem now is that it hurts so bad that I can't use my walker or my wheelchair without help; and this saga will, I am sure, continue until that black cloud over me decides to move on; but I think it really likes me
7/10/14 UPDATE—- After wearing that lovely cast for 2 1/2 weeks, I returned to my doctor to have my cast removed only to be HORRIFIED TO SEE THAT MY WRIST BONE COMPLETELY SHIFTED! which was pretty gross to look at. So, as my life goes on so cheerfully………………….
7/14/14 UPDATE—I HAD TO HAVE SURGERY ON AND HAD A PLATE AND 7 PINS PUT IN. After wearing a cast for an additional 2 1/2, he put another cast on which he wants me to wear for 3 1/2 weeks making it a total of 8 1/2 weeks wearing a cast. And get this, he told me not to use my right hand this whole time. Now, who the he** can go 8 1/2 weeks not using their right hand when they are right handed! Anyway, I am trying, AND THIS SAGA, I AM SURE, WILL CONTINUE UNTIL THAT BLACK CLOUD OVER ME DECIDES TO MOVE ON, BUT I THINK IT REALLY LIKES ME
9/20/14 UPDATE— NOT GOOD NEWS, OF COURSE; I FINISHED PHYSICAL THERAPY—A GOOD THING. MY WRIST STILL HURTS, BUT IT WILL FOR A WHILE. THE PHYSICAL THERAPY CAUSED A LOT OF PAIN IN MY 5-TIME KNEE SURGERY KNEE, SO NOW I HAVE TO GET A SERIES OF GEL SHOTS, ONCE A WEEK FOR 5 WEEKS. AT THE 3RD GEL SHOT, I SHOWED THE DOCTOR THAT ON MY RT. BROKEN WRIST HAND, I COULDN’’T OPEN MY MIDDLE FINGER EXCEPT WITH MY LEFT HAND. HE TELLS ME I HAVE TRIGGER FINGER AGAIN ON MY MIDDLE FINGER NEXT TO THE RING FINGER THAT I HAD TRIGGER FINGER SURGERY ON BEFORE SO……
9/21/14 UPDATE— HAND SURGERY AGAIN TO REPAIR TRIGGER FINGER! ALL THESE SURGERIES ARE WEARING ME OUT. I AM STILL PRAYING FOR A BREAK FROM ALL OF THIS. BUT I JUST WISH THE GOOD LORD WOULD WORK A LITTLE FASTER!
UPDATING THE YEAR 2014:
2/16/14 UPDATE— HAD A COLLAPSED LUNG 4/21/14 TORE MY RT. KNEE MENISCUS FOR THE 5TH TIME 6/23/14 BROKE RIGHT WRIST & HAD A PLATE & 7 PINS PUT IN 9/21/14 HAD TRIGGER FINGER SURGERY......WHY DIDN'T I ACCOMPLISH MORE THINGS THIS YEAR? GUESS I WAS BUSY DOING LITTLE THINGS.
BETTER LUCK IN 2015. PRETTY SOON I'LL HAVE TO STOP UPDATING AND JUST START WRITING A BOOK!!!!!!!!!!!!
1/22/15 UPDATE —HORRIBLE NEWS—AFTER BEING IN SO MUCH PAIN IN MY FEET. LEGS, AND HANDS, I HAVE BEEN DIAGNOSED WITH A SECOND NEUROLOGICAL DISORDER CALLED PERIPHERAL NEUROPATHY. THE DOCTOR SAID THE PAIN IS MANAGABLE, BUT RIGHT NOW I AM IN EXTREME PAIN. WHEN THE DOCTOR CAME INTO THE ROOM AND TOLD US, MY HUSBAND AND I JUST STARTED CRYING. IT HAS BEEN ONE PROBLEM AFTER ANOTHER, AND IT IS WEARING ME DOWN.
4/21/15 UPDATE— I AM NOW IN A WHEELCHAIR. MY PAIN IS EASING BUT THE NUMBNESS IS NOT GETTING ANY BETTER.
6/11/15 UPDATE— MY DAD PASSED AWAY AND MY HEART IS BREAKING.
2015 IS NOT BETTER.
12/29/15 UPDATE— I HAVE BEEN ON THE NEW DRUG RYTARY SINCE MARCH AND THEIR HAS BEEN NO CHANGE IN MY CONDITION WHICH IS VERY DEPRESSING SINCE MY DOCTOR TOLD ME THAT I AM ON THE HIGHEST DOSE YOU CAN TAKE. THE NUMBNESS IN MY LEGS IS SLOWLY GOING AWAY IN SOME AREAS; BUT MY FEET ARE NUMB AND COLD. WHEN MY MEDS START WEARING OFF, MY TOES CURL IN REAL TIGHT AND BOTH MY FEET ARE IN A BALL WHICH IS EXTREMELY PAINFUL AND THE PAIN MEDS DON’T REALLY HELP. I HATE BEING IN A WHEELCHAIR. IT HAS MADE MY LIFE MUCH MORE DIFFICULT.
2/15/16 UPDATE--SAW MY NEURO. I HAVE LOST SO MUCH WEIGHT, DOWN TO 100 LBS, I AM IN A VERY WEAKENED STATE, I AM NOW ANEMIC; MY NEURO WANTS ME TO DO AN LSVT PROGRAM & HAVE AN OCCUPATIONAL THERAPIST WORK ON MY STIFF, CURLED HAND.
3/20/16 UPDATE— THE GREAT THING ABOUT THE LSVT PROGRAM IS THAT THEY CAN ADAPT THE EXERCISES SO THAT ANYONE CAN DO THEM NO MATTER WHAT THEIR PHYSICAL DISABILITY IS. THEY ADAPTED MY EXERCISES SO THAT I DO THEM SITTING DOWN OR HOLDING ON TO A CHAIR, BUT I GET A GOOD WORKOUT. LSVT IS AN AMAZING PROGRAM. MY HAND DOES NOT FEEL ANY DIFFERENT, BUT I AM GAINING ARM STRENGTH;
3/24/16 UPDATE—SORRY I HAVEN’T BEEN ON PLM FOR A LONG TIME AND HAVEN’T KEPT UP WITH MY MESSAGES WHICH I DEEPLY APOLOGIZE FOR; BUT THE DEPRESSION I WENT INTO AFTER LOSING MY DAD, THEN WE HAD TO SELL THE HOUSE THAT MY PARENTS HAD BUILT WHICH THEY HAD LIVED IN FOR 50 YEARS. IT IS THE ONLY HOME I REMEMBER. THE LAST DAY THAT WE PACKED UP, I JUST SAT OUTSIDE AND CRIED, “THIS IS MY HOUSE, NO ONE ELSE SHOULD LIVE HERE. THEN MY MOM HAD TO MOVE, BUT LUCKY FOR HER, THE SENIOR APARTMENT COMPLEX THAT HER NAME WAS ON CALLED HER AND SAID THEY HAD AN APARTMENT AVAILABLE FOR HER. SO WE HAD TO MOVE HER IN THERE AND GET HER SETTLED IN. SO MY LIFE HAS BEEN A WHIRLWIND AND IS JUST NOW SETTLING DOWN. (I THINK) BUT I STILL MISS MY DAD SO MUCH.
9/5/16 UPDATE-I HADTO MAKE ONE OF THE HARDEST DECISIONS THAT I HAVE EVER MADE IN MY LIFE—I HAD TOO PUT MY 13 YEAR OLD DOG, OLLIE (SHIH TZU) TO SLEEP. HE WAS HAVING KIDNEY FAILURE. HE HAS BEEN WITH ME THROUGH MY LIFE WITH PD. HE WAS NOT A FAMILY DOG. HE WAS MY DOG. HE NEVER LEFT MY SIDE.WHEREVER I WAS.. HE EVEN GUARDED THE BATHROOM DOOR TILL I CAME OUT. WHEN I WOULD GET REALLY SICK AND SLEEP TILL 3 PM, HE NEVER WOKE ME UP TO FEED HIM BREAKFAST. HE WOULD WAIT TILL I GOT UP. THE WHOLE FAMILY WOULD BE HUSTLING AND BUSTLING ALL OVER THE HOUSE, BUT HE WOULD STAY WITH ME. MY MOM CALLED HIM MY “LITTLE SHADOW.” HE WAS MY BEST FRIEND WHO I COULDN’T HAVE LOVED MORE.HE GAVE ME MORE THAN I COULD EVER GIVE HIM. MY HEART HAS BEEN BROKEN AGAIN, AND WILL NEVER BE THE SAME. THEN I WENT IN TO SEE MY NEURO WHO TELLS ME I AM NOW IN THE ADVANCED STAGES OF PD.
12/27/16 UPDATE--I MISS MY DOG SO MUCH-I STILL CRY AT NIGHT WITHOUT HIM IN BED WITH ME. I SLEEP WITH HIS BLANKET AGAINST ME EVERY NIGHT; AND I CANNOT PUT HIS DOG BED AND HIS FAVORITE TOY AWAY. THEY ARE STILL IN THE CORNER OF MY LIVING ROOM. BUT I FIGURE IF IT MAKES ME FEEL BETTER--WHO CARES. I AM 59 AND IN THE ADVANCED STAGES OF PARKINSON'S. MY HUBAND WORKS 55 HOURS A WEEK SO I AM ALONE A LOT. MY ONE DAUGHTER IS GOING THRU A DIVORCE. MY GRANDKIDS ARE 10 & 8, AND THEY ARE NOT HANDLING THINGS WELL, SO I HAVE BEEN CRYING AND WORRYING ABOUT THEM EVERY DAY. MY OTHER DAUGHTER JUST HAD A BABY BOY!!! THAT'S THE HAPPINESS IN MY LIFE RIGHT NOW. SHE ALSO HAS A 22 MONTH OLD SON. EVERYONE'S LIFE IS PRETTY HECTIC RIGHT NOW, SO I DON'T WANT TO BURDEN THEM WITH HELPING ME. I CAN GET AROUND A LITTLE BIT IN MY WHEELCHAIR, BUT IT IS SO HARD TO USE ON THE CARPET. SO I DON'T DO HARDLY ANYTHING. TRYING TO GET SOMETHING TO EAT IN THE AFTERNOON TAKES ME 1/2 AN HOUR. I AM IN PAIN EVERYDAY WHICH WAS ONE OF MY FIRST SYMPTOMS. AT THIS POINT I DON'T FEEL LIKE I AM "LIVING".
2/5/17 UPDATE---LAST WEEK I LOST ONE OF MY BEST FRIENDS. SHE WAS ONLY 65, AND HER HEART JUST GAVE OUT. THE FAMILY CAN'T BELIEVE IT. SHE CALLED FOR AN AMBULANCE, AND THEY SAID HER HEART RATE WAS 20 BEATS A MINUTE. THE SAD THING IS THAT YEARS AGO, SHE GOT MANTLE-CELL LYMPHOMA AND HAD TO HAVE A BONE MARROW TRANSPLANT. SHE HAD A 5% CHANCE OF SURVIVING, AND SHE DID!!! I AM JUST VERY UPSET BY THE WHOLE THING AND I CAN'T BELIEVE SHE IS GONE
5/4/17 UPDATE-SINCE I HAVE BEEN DIAGNOSED WITH ADVANCED PD, I CAN'T STOP THINKING ABOUT DYING LATELY. I AM TERRIFIED AND SCARED. I AM ONLY 59. THIS WAS SUPPOSED TO BE THE TIME IN MY LIFE WHEN MY HUSBAND AND I SHOULD ENJOY BEING TOGETHER, HAVING FUN, AND GOING PLACES. THERE ARE MORE DAYS, JUST IN THE PAST 6 MONTHS, THAT I AM IN BED ALL DAY WITH SEVERE PAIN AND CRAMPING IN MY TOES UP TO MY HIPS. I WAS TOLD IT IS DIRECTLY RELATED TO MY PD ANF MY PERIPHERAL NEUROPATHY. I AM ON SEVERAL PAIN MEDS; BUT THEY BARELY GIVE ME ANY RELIEF FROM MY PAIN. MOST PEOPLE, INCLUDING ME WOULD EVER THINK THAT PD IS THAT PAINFUL; BUT THAT IS ONE SYMPTOM I STARTED OUT WITH HAVING DYSTONIA TOO; AND IT IS THE ONE SYMPTOM THAT HAS PLAGUED ME FOR THE LAST 14 YEARS. I WAS SENT TO A PAIN MANAGEMENT SPECIALIST WHO COULD NOT EVEN HELP ME. IT HAS BEEN A PRETTY SAD LIFE HAVING TO GET USED TO LIVING WITH PAIN. I DON'T EVEN REMEMBER WHEN I HAD A GOOD DAY.