New Website

It been a while since I wrote but Ive been busy making sure you all get the latest news.

Thanks to a God send lady by the name Caroline Kibe of Digital Web Crafts (Diwecs), you can all get the latest information concerning Parkinson's disease, symptoms, diagnosis and even treatment.

Feel free to visit our new and informative website -  www.africaparkinsons.org.

EMPATHY NOT SYMPATHY

Last night as I went to bed, I took some time thinking about how I would make this organization successful and relevant. As I was going through my plans and thoughts I couldn’t help but think of my dear father and all he went through. I remember vividly when he broke the news that he was unwell. He even went to the extent of getting a counselor to get me through it. At that point I barely understood that this disease was here to stay as there was no cure and I did not pay much attention.

One memory in particular invoked emotions that I didn’t know existed anymore. I remembered one sad night I woke up to go to the toilet and as I got to the door I heard a faint mourn and a very light knock on my fathers door. I thought it was the wind and I ignored the sounds and got into the toilet finished my business and walked out. As I switched off the lights I heard the mourn again and I decided to check on my dad. As I pushed open the door, there he was on the ground. He was on his way to the toilet when his legs gave in and he couldn’t get up. Luckily one of my aunts was home and I woke her up and she helped him back to bed. That was the last time my dad slept on his own. For the first time in years I cried myself to sleep as I put myself in his shoes. How long was he on the floor? What if I ignored the mourns completely? What if it was me on that floor, would I have wanted my children to see me that helpless? For so many years I focused on what I felt and God forgive me for never thinking about how my father felt. I felt depression, anger, despair, frustration, embarrassment all at the same time and I couldn’t hold back the tears. All this time I thought about how I felt and completely forgot that my dad was the victim and not me.

For me to be successful I need to be more empathetic of the plight of people living with Parkinson’s disease.

PARKINSON'S DISEASE SYMPTOMS

The type and severity of symptoms experienced by a person with Parkinson's disease vary with each individual and the stage of Parkinson's disease. The most common symptoms include:

• Tremor, or shaking - often in a hand, arm, or leg. Tremor caused by Parkinson's disease occurs when the person is awake and sitting or standing still (resting tremor) and subsides when the person moves the affected body part.
•  Stiff muscles (rigidity) and aching muscles - One of the most common early signs of Parkinson's disease is a reduced arm swing on one side when the person is walking that is caused by rigid muscles. Rigidity can also affect the muscles of the legs, face, neck, or other parts of the body and may cause muscles to feel tired and achy.
• Slow, limited movement (bradykinesia) - especially when the person tries to move from a resting position. For instance, it may be difficult to get out of a chair or turn over in bed.
• Weakness of face and throat muscles - Talking and swallowing may become more difficult, and the person may choke, cough, or drool. Speech becomes softer and monotonous. Loss of movement in the muscles in the face can cause a fixed, vacant facial expression, often called the "Parkinson's mask.
• Difficulty with walking (gait disturbance) and balance (postural instability) -A person with Parkinson's disease is likely to take small steps and shuffle with his or her feet close together, bend forward slightly at the waist (stooped posture), and have trouble turning around. Balance and posture problems may result in frequent falls. But these problems usually do not develop until later in the course of the disease.

Tremor is often the first symptom that people with Parkinson's disease or their family members notice. Initially, the tremor may appear in just one arm or leg or only on one side of the body. The tremor also may affect the chin, lips, and tongue.

Although tremor is one of the most common signs of Parkinson's disease, not everyone with tremor has Parkinson's disease. Unlike tremor caused by Parkinson's disease, tremor caused by other conditions gets better when your arm or hand is not moving and gets worse when you try to move it. 

 

Parkinson's disease can cause many other symptoms. These include:

• Decreased dexterity and coordination. Changes in handwriting are common, with writing becoming smaller. Athletic abilities decline and daily activities such as dressing and eating become harder.
• Cramps in the muscles and joints.
• Oily skin or increased dandruff.
• Digestive and urinary problems. Constipation is common. Controlling urination (incontinence) may be difficult, and urination may be frequent and at times urgent. Drugs used to treat Parkinson's disease may help or may sometimes make these symptoms worse.
• Problems with involuntary or automatic body functions, such as increased sweating, low blood pressure when the person stands up (orthostatic hypertension), and problems with sexual function. These symptoms may also be caused by Parkinson's-plus conditions or drugs used to treat Parkinson's disease.
• Freezing, a sudden, brief inability to move. It most often affects walking.
• Problems falling asleep or staying asleep (insomnia) can result from anxiety, depression, or physical restlessness. People with Parkinson's disease may not be able to sleep well because they cannot easily turn over or change position in bed.
• A person with Parkinson's disease may slowly become more dependent, fearful, indecisive, and passive. The person may talk less often than he or she used to, withdraw from family and friends, and remain inactive unless encouraged to move about. Depression is very common in people with this disease and can be caused by chemical changes in the brain or can be a reaction to having a disabling disease. Depression often improves with proper treatment.
• Up to one-third of people with Parkinson's disease may develop dementia and confusion, similar to Alzheimer's disease, late in the course of the disease. Depression can further contribute to memory loss and confusion. Memory loss, hallucinations (seeing or hearing things that aren't really there), and vivid dreams may sometimes be caused by drugs taken to treat Parkinson's disease.

THE BIRTH OF A DREAM..

On most weekends my father would opt to leave his car at home and go about his errands using public transport. Sometime in 2001 he requested me to accompany him to Nairobi Hospital. He was going to purchase some of the drugs prescribed for him to control the tremors that are a symptom of Parkinson disease. Being a weekend he decided that we should use public transport to the hospital. We made our way to the pharmacy at Nairobi Hospital bought the drugs and started our journey back. When we got to the city center we alighted at Ambassador and walked towards the bus stop along Tom Mboya street. The entire street was packed with hawkers trying to sell their ware. I was holding my fathers hand so that people don’t bump on to him. Out of nowhere a man started hurling insults at us……”Ondoa huyu mlevi wako kwa njia tupite” (move that drunkard of yours out of the way). For a moment there I was not sure whether to react angrily and insult the man or to simply keep quiet and forgive him for he didn’t know what my father was going through. This man simply looked at how my father was struggling to walk and how he was shaking and took him for a drunk. I was very angry at the man for insulting my father but at that point I realized how much people didn’t have knowledge on Parkinsons Disease and the kind of struggles patients have to go through as they live each day with the disease.

Through that mans lack of knowledge and his insults a dream was born. Ever since that day I got an urge to let people know what my father was ailing from and the struggles that we as a family had to go through. Now I am living the dream each day as I share my experiences on Parkinson’s disease.

What is Parkinson's Disease?

Parkinson's disease is a disabling condition of the brain characterized by slowness of movement, shaking, stiffness, and in the later stages, loss of balance. Many of these symptoms are due to the loss of certain nerves in the brain, which results in the lack of a chemical called dopamine.  

Early in the course of the disease, the most obvious symptoms are movement - related; these include shaking, rigidity, slowness of movement and difficulty with walking and gait. Later, cognitive and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease. Other symptoms include sensory, sleep and emotional problems.

Who is Africa Parkinson's Disease Foundation?

We are the first and only organization in Kenya working exclusively to support people living with Parkinson's disease, their families and care-givers. This foundation is a not for profit organization with no political affiliation. The main objective of the foundation is to educate and create awareness and understanding of Parkinson's disease.

The specific objectives of the organization are as follows:

1)      To promote public awareness and contribute to the development and sharing of greater knowledge and information about Parkinson’s disease.

2)      To establish guidelines for a “continuous education program” for patients of this disease and to make it available in writing and on – line.

3)      To improve the quality of life of Parkinson’s disease patients all over Africa.

4)      To support research on Parkinson’s disease with eventual promotional campaigns.

5)      To establish and maintain contacts with national and international organizations with the aims of promoting laws, regulations and measures in favor of patients suffering from Parkinson’s disease.

This organization is the brainchild of its Chief Executive Officer , Hellen Wambui Mwithiga(above) whose father David Mwithiga Mungai was diagnosed with Parkinson's disease in the year 1994 and passed on in 2010 due to Parkinson's disease related complications.