Feeling hopeful again
"All of us, particularly young people, take our health for granted - until the day we don't have it. It certainly was that way for me..."
Those words were written by Rose Weisgram of Alexandria.
Prior to having a surgical procedure done in February, she documented her medical struggles, telling the story of how her health deteriorated and how she had just about given up before the flame of hope was rekindled.
Following is her story...
Rose Weisgram was enjoying a busy but rewarding life, working two jobs while caring for her two daughters, Ashley and Lindsay, along with her husband, Gary.
About nine years ago, she started feeling extremely fatigued. She visited several different doctors looking for answers. Her condition eventually forced her to leave her retail management job.
She focused on "catching up with sleep," taking some online classes and keeping up with her remaining part-time job.
In December 2001 she went back to work full time for a different company. Although she still wasn't feeling well and still struggled with fatigue, she felt she didn't have a choice.
"You've got to work to make ends meet, especially when you have medical bills," she said.
She continued to seek the advice of doctors, and was finally referred to a neurologist in St. Cloud. She met with that doctor in June of 2002, just days before her oldest daughter's graduation party. Her sister, who is a nurse, accompanied her.
"I remember that day like it was yesterday," Weisgram wrote. "The doctor came in, introduced himself, he grabbed a box of Kleenex, handed them to me and said he was 95 percent sure I had Parkinson's disease (PD)."
Weisgram said her first reaction was to laugh.
"I didn't have time for Parkison's.... This was Wednesday. On Sunday I had 200 to 225 people coming to our house for a pig roast for my daughter's graduation party. What was he thinking?"
She let her sister talk with the doctor while she hurried to her car to deal with her emotions.
"The doctor told me I was lucky it wasn't a brain tumor. They were able to rule that out. Lucky was the last thing I was feeling at the moment."
Weisgram turned her attention to her daughter's graduation party, and after that, sought a second opinion. Two weeks later, she went to the Struthers Parkinson's Center in Golden Valley where her PD diagnosis was confirmed.
Many medical appointments followed over the next few years.
"At one point I had 15 prescriptions. I could not find a medicine that would work for me. My doctor had to keep changing and adding medications to keep my body moving."
The stress caused by the condition steadily increased, and Weisgram remembers the point where she thought she couldn't take any more of it.
She felt the gradual progression of the disease and endured constant pain. She suffered from severe episodes of dyskensia (involuntary movements). At one time she was taking 500 pills a month. Eventually she lost the ability to write, speak, walk and care for herself.
"I just couldn't deal with what was going on. I thought that if things kept up at this pace I would be dead within the next few years.
"I lost the sense that I had control over my body and my life. The realization shattered me. I was living in a body that had become a frightening stranger, and seemed to continually change, as I would feel okay one minute and lousy the next. I couldn't trust my body anymore, or predict how it would respond on the demands I made on it.
"I used to plan my life years in advance. Then it became difficult to make plans for even the next day. Daily I gave up new controls over my body and emotions, taking medication to help endure the effects of the disease. The medications would add their own strange effects, causing an even greater sense of helplessness and loss of control.
"It has taken me a long time to fully understand that I was indeed fortunate to be alive: lucky to have had older children, lucky for having a supportive husband, parents, family and friends, and lucky that as long as there was still breath in my lungs, there is hope for everything.
Weisgram said it was at that point that her determination kicked in and she decided she was going to get her life back.
"This disease just didn't fit into my game plan. I couldn't imagine myself as a hopeless vegetable. I wouldn't allow myself to accept a negative prognosis.
"It seemed as though one part of my life was dying and I was undergoing another difficult birth. Every ending is truly a new beginning. This is where the miracle of my life begins."
The miracle Weisgram referred to is deep brain stimulation (DBS) surgery (see related article). She met with specialists and was told that her quality of life was not going to get any better unless she had the surgery. She knew that it was the right thing to do.
"Never in a million years at age 40 did I think PD would be a part of my life. Now, at age 47, I'm beginning a new phase of my life. To rebuild my life in a new and meaningful way. To face the journey that lies ahead of me. To imagine the possibilities beyond the PD. I have a life I fight for every day. I wake up every morning lucky to be alive and grateful for the opportunities that I have been given to still be able to realize my dreams."
Weisgram was the first person to undergo DBS surgery at United Hospital in St. Paul. The first part of the surgery was conducted on February 25, 2009 and involved placing a DBS lead into her brain and connecting a lead. She was awake during the procedure, which took more than four hours and involved 45 doctors, nurses and other medical professionals.
A second surgery was done on an outpatient basis on March 11 to place a pulse generator in her chest.
Now, only a couple of months later, Weisgram has regained her speech and writing abilities, is walking again and is down to four pills a day. In the future, she will undergo the same procedure on her left side.
"It's incredible how much you get back," Weisgram said. "I can walk and talk. Hopefully it will last a good 10 to 20 years, and hopefully they'll have a cure by then," she said.
Following the surgery, Weisgram underwent rehabilitation at the Sister Kinney Rehabilitation Institute. She has regular check ups and adjustments are made to her device to ensure it is providing the most relief possible for her condition.
Weisgram is happy with where she's at and is again looking forward to her future.
"I have found that out of every challenge in your life comes something better than before. Sometimes it seems unfair, unjust...why me? It is very hard to see the light at the end of the tunnel. Especially when the diagnosis is a chronic, debilitating disease without a cure.
"Believe me when I say that no matter how long it takes, you emerge a very different person. You see how this challenge has made your life more meaningful.
"What first seemed like a death sentence to me has turned out to be a blessing. In meeting the challenge of living with PD I've changed for the better. I have become a much stronger, compassionate person. It has been a wake up call to stop putting off the things that I have always dreamed of doing.
I really feel hopeful for the first time in a long time. New thoughts begin to bud, new dreams are born, and new directions present themselves in the perfect timing of the seasons of my life."
What is deep brain stimulation?
Deep brain stimulation was developed in the 1990s and is now a standard treatment. The surgery is not for everyone who suffers from Parkinson's disease, but is most effective for those who experience disabling tremors, wearing-off spells and medication-induced dyskinesia.
The surgery involves placement of an electronic stimulator in stages. The stimulator consists of three parts - the DBS lead, the connecting lead and the battery.
The DBS lead is inserted deep into the brain to stimulate the target site. The connecting wire runs under the skin from the DBS lead at the scalp site, behind the ear and down the neck into the chest where it connects to the battery pack or implantable pulse generator (IPG).
The IPG resides like a pacemaker beneath the skin of the chest wall under the collar bone. It sends electrical impulses through the connecting wire to the DBS electrode in the brain.