Support Patricia Hansen for Parkinson SuperWalk
Everyday Heroes. Extraordinary Hope.
My Parkinson Story (The beginning)
This morning, I plan to begin my Parkinson story and in the weeks ahead, I will continue until the walk on September 9th. Back in the mid 1990's, we were running a bed and breakfast in Colwood, just west of Victoria, BC. We lived on Triangle Mountain and I just loved to walk on top of the hill with its ups and downs, but I began to be aware of my posture becoming increasingly stooped and I would get terrible pain in my upper back when cleaning up after my guests. On one occasion in 1999 we were on a bike ride in Mexico and we stopped for a rest and my right arm was shaking uncontrollably, My husband and I both knew something was wrong. As we were leaving from the airport to return home, I wasn't able to stand in the lineup because of the inner tremour. Once back in BC, I went to see our family doctor and he diagnosed me with Parkinsons Disease. This was later confirmed by Dr. Martin, a neurologist. I remember him well. He was a ballroom dancer and he danced around his office telling me that I was to imagine that my breastbone was attached to a sky hook and to walk around like that. Tune in next week for the continuing Parkinson surprises.
My Parkinson Story (week2)
After being diagnosed, I was sent out into the world with no medication and I felt all alone in my battle, which was a daunting outlook. My symptoms in the following months were resting tremour, mostly the pill rolling action in my left hand. If I was standing with a bag of something in my hand, the bag would be jumping around like a Mexican jumping bean. Also when driving as a passenger in the car, I could never get comfortable as I had an inner tremour that seemed to resonate from my lower back. If my husband seemed to be driving a little too fast, I would feel like we were out of control. It became abundantly clear that I would not be able to continue running our bed and breakfast, so the decision was made to sell our home. About that time, Dr. Martin gave me a prescription for Amantadine, which was a real blessing as it eventually took away my tremour. Stay tuned for Week 3.
- My Parkinson Story (Week 3)
The next step was to list our home, and since we wanted to sell it as a bed and breakfast, we used our B&B website to reach people. We put it on the market in the fall of 1999 and we only had one interested party. That was all we needed. We finalized the sale the end of March and headed east, arriving in the Ottawa area on the 6th of April. We concentrated on finding a place to settle and decided Carleton Place was where we wanted to be.
At this point in time, my symptoms were mainly this funny feeling in my back and the fear of having an accident with the car, whether I was driving or someone else. When I drove on the Queensway, it seemed the cars were swishing by me on both sides and I didn't know whether I was in control or not. After a couple of months, we were able to find a family doctor and he referred me to a Neurologist, Dr. Atack. I had great respect for Dr. Atack and he did a lot to help me with my various symptoms. Our life was a little crazy at that time. The first summer in CP, my husband Henry was building a home for a couple on Mississippi Lake and in the evenings, he would work at the renovation of our old house (built cerca 1873). After Christmas, we headed down to Mexico, as was our custom, and on the way home, Henry was told of a job opportunity (near Peterborough) to supervise the renovation of an hotel. The deal was finalized quickly and we began our weekly commute between CP and the jobsite, which lasted more than a year. The owners of this property were most gracious and we were very well treated. Henry finished up the job around the middle of August 2002. During this time, it was very difficult to have a routine and I was taking various medications, in an attempt to see what would work best for me. The good thing about all the commuting, I got over my fear of driving and being a passenger in the car. That's Parkinsons- a symptom can be here one day and gone the next, to be replaced with something else. More next week (4)
WEEK 4 (COPING)
By this time, I was beginning to take an interest in this disease I had, and I started reading with an attempt to learn some of the terminology and see what applied to me. I had no interest whatsoever in seeking out other people with Parkinsons, because I was afraid if I saw what was happening that it would happen to me. Looking back, it was like a childish denial.
When we finished the hotel project, our new home was nearly constructed and it was ready for Henry to take over and do the finishing. Our daughter Kathy was an immense help to Henry, doing all the finishing right along with her Dad, even to installing insulation (her favourite). It was a very lonely time for me, as I was unable to help them and that made me feel useless. I made all the meals, but that didn't seem like much of a contribution. I began to feel bitter about their close relationship and jealous as well. I hated having these feelings, because I am a born again Christian and I should have been praying about my thoughts rather than letting them fester. We moved into our new home in March of 2003 and work began on fixing up our old house to be made into a rental. Please come back next week
Week 5 (Increasing symptoms)
It took a few months before we were able to rent our house. Being landlords was a whole new experience for us. We had to be more realistic about what the market would bear and so we lowered our rent. My husband Henry has always had an abundance of energy and never shied away from any job in front of him. As for me, I had never been a mover and a shaker, and with the addition of PD, it was hard for me to keep up with my day to day activities, let alone adding this new responsibility. During this period of time, I was aware of my slowness, my poor balance and I began having falls. They were minor in the beginning, but with every one, came the fear of the next one and the increasing loss of balance. In January, on our way to Mexico, we were south of Kingsville, Texas, (I was at the wheel),when a car pulled out from a restaurant parking lot right in front of me. I was doing 45mph at the time. I tried to veer to the right to avoid hitting the driver's door, but his car spun around and hit our vehicle head on on the left, pinning me in the car. The other driver was charged, but it made me wonder if it was time for me to give up driving. (What's next?)
Week 6 (Stress)
In June of that year, our daughter Teri was married and the pictures were taken here at our home. It was clear to me that the bride was very ill, and within a month she was in hospital having her third bowel re-section. From the time she was diagnosed with Crohn's Disease when she was nine years old, Teri has been one of my greatest concerns. In September, our daughter Kathy was married in Oshawa. This was a joyful occasion and Kathy made all the arrangements, so it was a stress-free event. It is difficult to remember what symptoms of Parkinsons I was experiencing at any particular time. Suffice to say, there was never a time that I was symptom free, and stress seemed to be a strong contributing factor to an increase in symptoms. In late 2005, Henry went to Alaska for a job that lasted about a month. While there, he picked up Hepatitis A, eating in a restaurant, and from that point on, he continued to lose weight all that year. In August he had his hip replaced, which helped a bit, but it was when we discovered he had a sensitivity to his iron supplement, that he began to improve. All this time, the stress was immense, as I feared I was going to lose my husband. (Until next week).
Week 7. (Life goes on)
Well, here we are well into 2006 already. In August Henry had his hip replaced. The surgery went well. Also in August we bought a new car to replace the one with which we had the accident. We never should have had it repaired as it caused us no end of grief and it was a relief to have a new one. I was still able to function and perform all my tasks at this point, except for the fact that I was so slow. I did not do well in the kitchen because I kept having to turn around, take a few steps, stop and turn around again. After half an hour of that routine, I would have to sit down and give my aching back a rest. That led to another problem; if I sat too long, I couldn't get up. I just couldn't figure out how to do it. Since I'm not suffering from that particular item at the moment, it seems ludicrous that I actually went through that. I'll be back next week. Join me, won't you?
Week 8 (This and that)
In 2007 we spent our last vacation at Paradise Village in Puerto Vallarta where we had gone since 1995, and the following year we stayed at the Canadian Resort on Los Flamingos Golf Course near Bucerias, where all the staff were Spanish speaking only and we made good friends with most of them as I practiced my Spanish (Henry used sign language with a great deal of success). I was still able to swim at this time, and I spent hours in the pool, all by my self most of the time. In September of 2008, we were visiting Henry's niece on her farm, and her dog bit me on the leg. Infection followed and intravenous antibiotics, giving way to four months of various types of dressings until finally in January 2009, the wound was healed. We headed down to Florida and stayed a few months. All the while, I was thinking about my elderly mother and concerned because it was very difficult to communicate with her. On returning home, I discovered my fears had not been unfounded, as Mom had had a very serious infection. Fortunately, my nephew and niece had looked after her very well. Please tune in next week.
Week 9 (knee problems)
One of the symptoms of Parkinsons is the cramping of the feet, usually first thing in the morning, but also at different times through the day, i.e., when trying to put on a pair of shoes or snowboots. This cramping finally led to my left leg bowing out at the knee. Not only did it look strange and affect my walking, but it took its toll on my left knee. While we were in Florida the winter of 2010, I had a number of falls and I realized I needed a knee replacement. We arrived home on April 1st and the snow was piled high on both sides of the driveway, so that we came in through what seemed like a tunnel. We soon learned of the birth of my first great grandson the day before and I couldn't wait to see him - snow or no snow! Tejey immediately won my heart and seven years later he is still my special little man. In July, I was assessed for a knee replacement and in December, I got the surgery date - January 25, 2011. No winter trip that year, and as it turned out, our travelling days had come to an end. Please come back next week.
Week 10 (Circumstances)
Not too long after my knee surgery, my Mom fell getting out of a friend's car and broke her pelvis and was hospitalized followed by rehab. The day we moved her to rehab, I realized I had shingles. Fortunately, I caught it before it became terribly painful. The year before (I forgot to mention), she had contracted a very serious urinary track infection and was hospitalized and had to have a time in respite. It's easy to write these things down on paper, but this does not begin to illustrate the concern and stress that everyone goes through when a loved one is suffering. I was very much aware of having Parkinson's during those two episodes. I watched my sister and niece running around and doing things, but I was sadly limited, as hard as I tried to contribute. Week 11 coming up.
Week 11 (More stress)
In August 2013, my Mom turned 95. There was a big party for her at the Swiss Chalet. Almost the whole family was in attendance and everyone contributed in some way. Shortly after that, I became aware that she was acting a bit strange, forgetting things and imagining things, calling 9-1-1 and not remembering she did it. One night there was a knock on her door and her neighbour asked, "Are you alright Lal?" The driveway was filled with vehicles - fire, ambulance, police. She was so surprised and I think, quite thrilled that so many had come to see her. In December she went to visit my sister and hurt her arm, but the worst thing was on her return home, she was convinced someone had broken in and had stolen things from her mail. She was really upset and couldn't have peace until my nephew replaced all her locks. Since I was the only sibling living close, I volunteered to look for a place that would be suitable for her to live, as it seemed wrong for her to remain living alone. I chose a place in the town where I live and everyone of the three of us agreed we would relocate her. This was an extremely stressful time for me and my PD worsened with every passing day. There were appointments (medical and otherwise), my husband needed me and couldn't understand my need to spend time with Mom. It was difficult putting the walker in and out of the car, etc.,etc. Next week - and more stress)
Week 12 (Sad times)
Looking over this history with Parkinsons sounds more like the story of my mother. That's because during these years, practically everything I did reminded me that I should be in closer contact with her - and more often. The stress was unbearable at times and it manifested itself through tight muscles, stooped posture, loss of balance, fear of what was going to happen, all the while, trying to make it look like I was fine. On May 2, 2014, at midnight, Mom fell getting up to use the washroom and lay there until 8:15 the next morning, when they came to check why she hadn't come out for breakfast. She was ambulanced to the hospital where she slept most of the next three days until my sister arrived from Aurora and kept Mom awake, because she has a sunny disposition that is hard to ignore. Mom was so happy to see her after Mickey's winter in Florida. My sister hated being away from Mom in the winter as much as I did. On Monday, after supper, Mom took a turn for the worse and passed away at 2:15 am Tuesday morning. I stood vigil with Mickey until 11:45 pm when I had to go home, as my legs had gone numb. I got the call shortly after that Mom was gone. Hope you will return next week.
Week 13 (More falls)
Mom’s passing, though expected, considering her age and physical problems, proved to be a great shock to my system. I thought I was coping well, but then I began falling, and quite regularly, tripping on the step to the kitchen at church, falling for no reason in the garden, so that I was afraid to step into the garden and then, on September 6th, our family was at a restaurant in Kanata. We were sitting on high stools around the table (10 of us, I think). I was the only one with just Perrier water. When lunch was over, I got down from my stool and stood waiting for everyone to start leaving, and wham! I looked sideways, spun around my cane and the cane jambed into my right shoulder and I landed on my left shoulder and then hit my head. An ambulance was called, but we opted to return to CPDMH for treatment. There was no concussion, but unbeknownst to anyone until my physiotherapist ordered an ultrasound, I had a full thickness tear of the Supraspinatus tendon. After lengthy physiotherapy and lots of exercise, that tear still gives me grief, but to add to the problem, on December 28th, in my very own kitchen, I fell toward the counter, reached out to grab said counter and glanced off of it, falling while holding on, resulting in breaking (a nasty break) the Humerus bone in my shoulder. My driving days were over, I couldn’t dress or shower myself, or even stir something on the stove. We brought in Bayshore to help with personal care three times a week and I was accepted into the Almonte Day Hospital twice a week (for seven months), which proved to be a wonderful help to me in many ways. That brings us to the end of 2015. Other things happened during this time, but they didn’t make quite the impact as the foregoing. Please come back next week. We’re getting close to Superwalk weekend – only 34 days left until our big day.
Week 14 - At the Almonte Day Hospital, I was taught to stand up straight and to be conscious of my posture. They also gave me instruction on how to stay balanced. They taught me that if I was retaining fluid, this would put me off balance. They taught me how to get up from a chair. All these new tricks were invaluable (for as long as I practiced them). Everyone noticed the improvement and I felt like I had the world by the tail on the downhill run; I was a new person. That ended in September of 2015, and as I mentioned above, slowly but surely, I let all these new lessons slip from my grasp.
I continued with Bayshore until February 2016, at which time, it became evident that more help would be needed to keep us going. That is when Mills Assisted Living came into our lives and what a Godsend they have been to us. I kid my husband that the girls are really coming to see him: I’m just the excuse they use. They do most of the things that I find particularly difficult, such as folding laundry, changing beds, unloading the dishwasher and putting dishes up on high shelves. They also help me to shower and get dressed. As well as Mills, we have our daughter Sonja come in every Saturday morning and cleans the house. Our daughter Kathy lives in Oshawa, but she is her Dad’s right arm when it comes to doing what he needs done – plumbing, gardening, you name it! We are truly blessed as far as help is concerned. Hope you will join me next week. We have less than a month to go now.
Week 15 - As we draw closer to Superwalk weekend, I think I’ll just write about current events. Looking back to 2016, I’m trying to remember what was happening in our lives. It suddenly dawned on me that we had some very important visits during the year. In April, my first great granddaughter Emily, just about nine months, came for a visit with her Mom and Dad, and her Grandma June all the way from Alberta. We had a wonderful time. I fell in love with Emily. She was so squishy to cuddle with. What I recall most about my symptoms at the time was the difficulty I was having getting off a chair or out of a booth in a restaurant. This can be very embarrassing. I also felt sorry for the young people having to load my walker in and out of the van so many times. The next visit was from daughters June and Donna, which I always enjoy. In late September, daughter Anita, granddaughter Kirsten and great grandson Torben, just turned one year, came and stayed with us. Torben was a really happy little boy. Whenever a new face came into the room, he would light up with an huge smile. He also was a good eater. He ate everything the adults did. While they were here, Anita and I took Torben for a walk and I somehow did something to my back. It didn’t slow me down too much though, because I managed to attend the Smiths Falls Bears hockey game a couple of nights later. One of my favourite places to be is in an arena watching grandson Brett or great grandson Tejey, play hockey. And, oh yes, my trusty walker is right there with me. Two more chapters before Superwalk to help the growing number of people living with Parkinsons and their caregivers and medical teams. Thank you for caring.
Week 16 - We are coming down to the wire now - very little time left to try to help those living with Parkinsons and their care givers. I really can't think what I can say that will convince you of the desperate need. I don't know how other people with Parkinsons cope with their symptons. I only know my own inconveniences, the main one is the inability to turn around when I come to the end of the room I'm in. Also if I'm walking in a store or even in the house, if someone walks in front of me, I freeze. It is really very hard to describe this phenomonon. My whole body shakes with the effort to raise my feet off the floor to take a step. I have to say to myself, BIG STEP, BIG STEP! or sometimes it helps to rock back and forth sideways. Then there's the slowness. I offered my daughter to help her chop some basil for the dinner she was making specially for her Dad, who has been very ill, and I couldn't do it! I was exhausted and frustrated from tryiing. This is a solitary incident, which doesn't happen often, but there are new incidents every day. This is not a complaint, it's a fact and everyone's facts are different. That's the nature of the disease. I'm reaching out once again on behalf of these dear, patient, persevering people to give if you can. Thank you so much. Next time!
Week 17 - Now I know how writers feel when they experience “writers block” I know there are many things I want to say, but I don’t know how to start. Two things stand out in my mind, my husband’s failing health and the incredible amount of rain we have had this year. Henry, my husband, is in severe pain due to an arthritic hip that needs to be replaced. He had one hip replaced in 2006 and lost a lot of weight because he wasn’t eating. The same thing is happening this time, but this time he has been in and out of hospital three times since June 14. He has lost thirty lbs. and he didn’t need to lose any weight at all. I tell you this because I am very concerned about his health and I pray the medical team will make the right choices for his treatment. As I mentioned on more than one occasion, stress is my biggest enemy in that it so adversely affects my whole body. Lately I’ve been having severe back pain and this morning I woke up with an headache and a sore throat, and the Superwalk is only four (4) days away. HELP!
Our team has done very well, considering it is the first time out for the “Turtles”. The Linton family have recently blossomed and have contributed a lot to the team’s total funds to date. I’m so proud of them, and also my little Marjorie had a garage sale and donated the proceeds to our Parkinson campaign, bless her heart. She so often brings me to my senses and makes me see just how good my life is, and how blessed I really am. Thanks to all of you. Thank you to Rob and Krystal who have agreed to take me to the walk in Britannia this Saturday and to my daughter Kim and her husband John for bringing me back to Carleton Place.
Tonight at 10:30, I will turn 77 years old. Apart from my Parkinsons, I am very healthy. I think this is typical of PLWP. I was born on September 5th, 1940, but my Dad who was overseas fighting in WWII, received this news on September 6th, so for fifty years, he believed that was my birth date. Funny the things that pop into ones mind! I will close this note now. There may or may not be any more notations, but I will continue in these next few days to reach out to everyone in a last ditch effort to further the cause to help my brothers and sisters with PD and those who care for them. Thank you all!
Thanks for taking a look at my personal page. This September, I’m joining everyday heroes from communities across Canada as part of Parkinson SuperWalk. I’d like to tell you why, and what your donation will do. Back in January of this year, I joined a Parkinson support group in our area. After living with Parkinsons for twenty years, I felt it was time to see how other people were coping with their disease. Being in this group has inspired me to reach out and see if there is something I can do to make things better for others, at the same time learning ways to help myself.
The need is only increasing. More than 25 Canadians are diagnosed with Parkinson's every day; more than one person every hour. By 2031, the number of people living with Parkinson’s in Canada will more than double. I am participating in Parkinson SuperWalk to fund the increasing need for support, education, advocacy and research. This is why I’m asking for your support today.
Help me ensure Parkinson Canada is there for Canadians living with Parkinson’s today – while funding research into better treatments and one day, a cure.
To show your support, click the DONATE NOW button on the right hand side of the page, above the progress meter and achievements.
Every dollar means new hope. Thank you!
If anyone out there is interested in joining my team, let me know. We are called Patricia Hansen's Turtles.
If you have any questions, please contact Parkinson Canada.
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