By Jeri Horenstein (Bristol)
Special to the Sun
This article is about sharing and informing on the topic of Parkinson’s Disease. I live in the Kern River Valley and have discovered, not only living here, but on my travels all over, the general population is not well informed on the topic of Parkinson’s Disease. This is one of my more delicate topics to write about but feel the necessity, as well as the urgency, to talk about it.
My husband, Don, has been living with Parkinson’s Disease (PD) for about 20 years. We have been together for just over 13 years. Over the course of these 13 years, my husband has had many challenges and obstacles associated with PD.
Parkinson’s is a neurological disease associated with low levels of a chemical we provide (or not) in the brain called dopamine. Levadopa is turned into dopamine in the body and increases levels of this chemical. Levidopa is used to treat the stiffness, tremors, spasms, and poor control of PD.
The following are motor symptoms of PD:
– Bradykinesis: Slowness of movement
– Rigidity: Unusual stiffness in a limb or other body part.
– Resting tremor: An uncontrollable movement that affects a limb when it is at rest and stops for the duration of a voluntary movement. This is what most people only know about Parkinson’s Disease.
– Postural instability: Problems with standing or walking or impaired balance and coordination.
The following are non-motor symptoms of PD or (non-dopamine response):
– Cognitive: Decline in ability to multi-task and/or concentrate and potentially decline in intellectual functioning.
– Mood disorders: Depression and anxiety.
– Problems sleeping: REM sleep disorders where individuals act out in their dreams.
– Low blood pressure: When standing
– Speech/swallowing problems
– Unexplained pains, drooling, frozen face, smell loss
– Dyskinesis: Tremors, rigidity, slowness of movement
– DBS (Deep Brain Stimulation): Neurons firing to stimulate neurons brain. The adult brain has about 100 billion neurons that relay these signals (messages), billions of times each second. This is a two part surgery.
When I first met my husband, Don, he had a slight tremor in his right hand. This is what most people think PD is all about, but it is only the beginning. After around 2 years, he gradually started forgetting little things, which progressed into bigger things.
Don’s main passion was working/restoring Chevys and Ford trucks, but as time passed, it became more and more difficult to keep a steady hand to hold the tools; a hit and miss with PD sometimes they work, sometimes not.
More and more, I noticed his “gait” started to change. He was shuffling and having difficulty walking without losing his balance. He had many a fall and trips to the ER due to this.
Soon, Don would have severe mood swings; he would laugh or cry for no apparent reason. With PD it is called “off.” This is when the medication may not be enough. Don was and is taking what is called Citralopram for depression and Nuplazid for hallucinations. Nuplazis is the one non-hallucinogenic on the market, made possible by the scientists at Michael J. Fox research clinics, that doesn’t deplete the dopamine when taken, like most non-hallucinogenics. It was first used for MS patients. This has been a blessing for me, so he can sleep restful without demons, and I can get a little more much needed rest.
Don hasn’t driven in nearly 9 years due to tremors, spasms, lack of focus, and impaired coordination. Obviously, this was yet another difficult freedom to be taken from him.
Don underwent DBS surgery several years ago. We will never know if it would have been a success, since a sick nurse entered his ICU room just after the brain incisions. The short of it, he had emergency surgery where the wires to the right-side of the brain were infected; unfortunately, it was also the most diseased part. Sadly, Don had to spend the next 35 days in skilled nursing with a quadruple Nazlin (strongest antibiotic) IV, several times a day.
Two years ago, Don had urination issues due to PD. He had a prostatectomy that was not successful due to the progression of the disease. The neurotransmitters, again, were failing to give direction. He then had to wear diapers.
Over the course of the last 3 to 4 years, I have had Don on a regimen of walking every hour, brain games, flash cards and reading, which he always enjoyed. These are CRUCIAL in maintaining/leading a normal, healthy life, and prolonging. I was told had I not got on Don to do these things, he would have been gone already.
The last 6 months have been profound in the downward spiral in Don’s progression. We had our anniversary in December, where we went away to celebrate. Then, we enjoyed family at Christmas. After, we went to the movies, since it had been years. He had trouble but managed, or shall I say, we got through it. I am thankful for those special moments. Four days later, Don could no longer walk; the neurotransmitters could no longer get the message to his legs for no rhyme or reason.
Don has been on hospice, at home, with Optimal since December 13. He has been bedridden since January 7. Up until 3 weeks ago, Don could still feed himself. Now, he has to be fed all meals and administered all fluids. He has to have everything done for him, inducing bowel movements.
In the past 2 weeks, he has been getting confused about when/if to swallow. He is eating less than half the amount of food. The important thing in these last days is to give him lots of fluids and pain relieving meds to keep him as comfortable as possible. Don does not want to go on feeding tubes; that is the last stop. When cardiac arrest occurs, or he can no longer swallow, we will say, “Until we see each other again.”
I shared this article with my husband, respectfully, as it is very personal. He said, “It is important for them to know.” If Don wasn’t joking, he was pretty quiet, unless he had something pertinent to share. We have always shared everything!
It is so hard to see someone you love, who has always been so full of life and passion to make others laugh, spiral down so quickly in a matter of months.
No matter, I feel this is and has been a journey of continuous lessons of faith, love and matrimonial promise for me. I love him now more than ever. He is still my ROCK!
We will continue to share our love to the end. He spoke only three precious words the other night: “I love you.” There is still hope!
Research by the Michael J. Fox Foundation has discovered that a person blood related to a person with Parkinson’s Disease has a 15 percent chance of having the Parkinson gene and should consider being tested.
Numbers to call for help, to talk to someone or for clinical research include Michael J. Fox Foundation at 1-800-708-7644 and the Parkinson’s Foundation at 1-800-473-4636.