“Smell is a potent wizard that transports you across thousands of miles and all the years you have lived.” -Helen Keller
Imagine not being able to smell your favorite food, perfume, or flower in my case the star-gazer lily. Smell is intricately connected to our memories. Have you ever walked into a place and immediately transported to a bye gone era simply by an aroma?
Smell is a huge component of our everyday life, as I first discovered as an undergraduate when we did an experiment in which we were asked to drink of a substance while holding our nose tightly….after sipping the clear substance, we all unanimously hailed it as water. But after, the professor asked for us to drink the same liquid without holding our nose our astonishment was evident—-it was LEMONADE! A simple pinching of our nose had altered our perception of the world!
Loss of smell can be one of the earliest signs of Parkinson’s disease. It is believed that the olfactory bulb impairment is due to clumping of alpha synuclein…. (a normal protein found abundantly throughout the brain and in smaller amounts in heart, muscles and other tissues- believed to be an important player in maintaining synaptic vesicles in pre-synaptic terminals- these are the ones responsible for release of neurotransmitters like dopamine).
Recent data suggests that >95% of Parkinson’s patients present with significant loss of smell. This may be supportive of new theory that Parkinson’s disease starts in the olfactory bulb and not in basal ganglia as previously believed.
Besides helping us with survival by avoiding harmful substances like toxic gases or rotten foods the olfactory system help us to maintain personal hygiene, which allows us to interact with others socially.
Loss of smell has been linked to cognitive decline and loss because of that primitive connection to our memory banks; therefore it should come as no surprise that this is a harbinger of dementia –olfactory loss being one of the first symptoms and signs of Alzheimer’s and PD. Loss of smell has also been linked to psychiatric problems such as depression another common symptom of PD.
However, most people don’t really notice a loss of smell per say but rather a loss or change in taste because as I mentioned earlier taste is directly linked to our ability to smell. So food begins tasting bland and sometimes even foul. But when formerly tested using a Snell smell test, PD patients show deficits in discrimination, detection, and identification of odors.
At this time there is no known cure for hyposmia (decrease ability to smell) or anosmia (complete loss of smell or inability to smell). Smell problems are often overlooked in the medical community since they are not deemed critical to living yet they have a great impact upon our lives as I stated before. Much research is needed in this field particularly if it has potential to alter our moods and cognition.
However, the best we can do is try to augment gustatory strategies and be cognizant of potential hazards and install protective measures such as fire alarms- since smoke may not be detected. Make sure inspect expiration dates of food carefully. Simulated odors are available to use while cooking for those of us who cannot smell to increase sensation of flavor. However, these odors are quiet pungent to normal smelling people so would not advice using if there are people who have normal smell in family.
Other ways to circumvent this is by enhancing gustatory senses via creative cooking such as preparing and eating foods which are spicy, crunchy, and full of aromatic herbs, as well as adding color and textures to your foods in order to engage your other senses like sight and make your whole mouth titillate and vibrate with joy….. Bon Appetite!
I am a slow walker but I never walk backwards. Those who walk with God ALWAYS reach their destination.”- unknown
When I was in New York not long ago, I got a call from a dear friend to come help because she was ‘stuck.’ She was literally trapped both in the room and in her body, because when we have PD for whatever reason our bodies stop responding to our brain which is yelling….MOVE!
Fortunately, I was able to get into her room but she was stuck in the narrow hallway barely letting me stand next to her. Having many years of practice as a neurologist, I knew how to get her moving. I placed my arm around her arm and I told her now we will count together and move the right leg forward on one, like bicycling when you have momentum of someone else moving body mirrors image and can propel forward. The counting and beat also helps to move.
One of the biggest frustrations for people suffering with PD as disease advances is the inability to keep walking at will- the so call “motor block ” or “freezing phenomena” is the number one cause of falls in PD patients. Freezing which is said to occur in up to 30% of patients with PD. This problem happens suddenly and unexpectedly particularly when walking – it is as if glue has been applied to the body especially feet which get stubbornly stuck to whatever surface its own. Speech, eyes and writing are also affected. Although, this phenomenon is a sign of advanced disease occasionally it can be seen in early stages of PD in those who go untreated; this a excellent reason to start medication early.
So what causes this dreaded phenomenon?
Reason for this is unknown; but some believe that the brain fails to automatically adjust to changes in stride. This is more prevalent in those of us who have non- tremor dominant PD (i.e. more rigidity and gait problems from the onset of disease); those of us with prominent tremors -do not experience this problem as much.
Since the brain can’t react quickly or accommodate for changes in altitude, elevation, and spatial differences like walking on uneven ground, moving from one patterned floor to another, or walking through narrow hallways, or navigating small spaces, the individual has to make conscious decisions as to how to react and change stride in order to navigate; thus causing hesitation rather than automatic response. Freezing then is brought about by interruption of continuous movement. Freezing is worst with stress, and anxiety, walking in crowed places, upon reaching a target and suddenly having to stop, or turning in corners or confined spaces.
How do we treat?
Everyone is different.
The main thing is to first discover whether this pattern of walking or lack thereof is related to an “off” state. Does it occur with other symptoms such as rigidity, slowness, or tremors?
If so, then adjusting medications can help greatly to reduce this problem; especially the addition of such medications as Eldepryl and Zelpar which have been shown in studies to improve freezing. I have had good personal experience in decreasing freezing and other gait problems such as festination, very short labored steps, and over all improved mobility with the use of Azilect another MAO-B inhibitor as well. DBS usually tends to make gait and freezing worst in my own experience. In the literature, however, there is mention of a few cases where freezing improved after stimulation implant. I must caution that this is NOT the norm and that whatever improvement some might have noted I personally believe is due to correction of a patients primarily “off” state via DBS.
Other treatment modalities:
Physical therapy is of the out most importance to instruct patients in safety and teach a few tricks in order to move around home with greater ease.
Physical therapist love the use of blue tape as a visual transition aid on the floor. Parkinson’s patients often have ‘freezing’ episodes and require some visual aid to help them transition from one room to another when crossing doorways. I recommend placing a colored line-such as a piece of blue tape(any color will do), on the floor on the transition points that connect one room to another to allow easy flow and preventing you from getting stuck as you amble from room to room.
No carpets in the living areas. Best to have wood floors or tile with slippery surfaces to decrease friction while ambulating and allow for greater mobility within the home. (wear shoes with slippery soles).
Visual cues are extremely important because they provide feedback to allow you to determine where to place your feet. Types of visual cues include:
- lasers on canes
- U -walkers
- horizontal lines on the floor
- placing an X with tape in a semi-circle in small or tight spaces
- lasers at the tips of shoes (new technology still being tested)
- stepping over the foot of the therapist or care partner to initiate gait.
Auditory cues are just as important- to provide hearing signals to allow patients to step to the rhythm or beat of the music or sound. Some of the preferred music to walk to is marching music, or counting 1,2,3.. which is what I did with my friend along with my visual cues. Other auditory cues can be achieved by the use of a metronome which can be up-loaded for free on a smart phone. In the works there is a ‘movement sensor device’ prototype being developed in Spain. This system is designed to activate acoustic stimuli to allow the patient to walk better when it senses difficulty in motor movements.
“Your spark can become a flame and change everything!”- E.D. Nixon
As we commemorate one more year of Dr. Parkinson’s Birthday, we are reminded of the great accomplishments in the area of PD and neuroscience since he was a prominent physician in London. Yet, human kind has been battling a form of ‘Parkinson’s’, if not the same illness, for centuries before Dr. Charcot put a name to it in honor of James, dating back to the times of ancient India. From history we know that this disease does not discriminate against race, ethnicity, or social economic status. Currently, it is believed that there are approximately 10 million people world-wide suffering from this disease.
We have learned, however, that although mostly sporadic in nature there are some genetic predispositions to developing Parkinson’s disease which vary from one family to another and from one ethnic group to another. Despite the genetic predisposition it seems that environment and outer influences such as exposure to toxins can hasten the development of this illness in an otherwise normal individual.
Here are the most common Risk factors:
- Advancing age
- Male gender
- Decrease estrogen /early hysterectomy with ovary removal
- Environmental toxins
- Low Folate levels
- Agricultural workers
- Well water consumption
- History of essential tremors increases -depending on who you quote there is a 10-30% increase
- History of melanoma
- History of chronic constipation
- History of mood disorders
- History of sleep disorders such as RLS/REM behavior
- Repeated head trauma or severe head injury
- Family history of PD
- Ethnicity- Hispanics twice as likely to develop
- Occupation- those in medical field are also at greater risk presumably due to exposure of toxins and stress since the basal ganglia is overly sensitive to stress-may trigger faster aging process in the basal ganglia
Change is an inevitable part of life, without change there cannot be growth. The truth is that we are now in the middle of the PD pendulum swinging back. Since the name of Parkinson’s was ascribed to a disease that affects our motor system, causing slowness of movement, along with gait difficulty, rigidity of muscles and rest tremors that dissipate in sleep and when engaged in purposeful movement, was thought that PD was a disease of middle to late age white men. No longer is it just a “movement” disease but an entire body system illness affecting our thinking, our personalities, and almost every system from head to toe excluding the lungs. Now it also appears that PD is encompassing a much younger population many of whom appear to be women. So, no longer are the young and ‘fairer’ sex protected but rather caught up in the midst of the storm.
Therefore, it is up to all of us to do what ever we can big or small in fight against PD. We can volunteer for research studies, write our congressmen http://www.parkinsonsaction.org about needing more doctors and funding to provide for day to day issues encountered by those of us who live with PD in our lives either as patients or caregivers. we can offer our services to help those with PD, we can donate our monies to PD foundations such as http://www.pdf.org , you can purchase a ‘Parky Raccoon’ to help send someone to WPC next year or simply to raise awareness for a still obscure disease in many circles.