Neurological Associates Paper

I was surprised and delighted to learn that an article appeared about me recently in the Neurological Associates of West Los Angeles. Word of my little book with its big message seems to be reaching far and wide. I will continue to spread my message of hope and positive thinking, striving to bring greater awareness of this debilitating disease, and shall keep up the fight. Education and knowledge are powerful tools, and through my book and this blog I am reaching many people around the world. Fellow sufferers and caregivers are relating to what I write, and people in the medical profession appear to be intrigued at my stark honesty and how I tell it just as it is – not sugar coated – but “raw” and truthful. Everything I write is from personal experience,  so this blog is my own Parkinson’s journey.

Curiosity killed the cat!

Sitting on a bench looking out over the sea, at a distance some women were having a rather heated discussion. Although I couldn't actually hear what they were saying, from the violent hand gesticulations and enraged looks, they were both upset and the nature of their conversation must have been serious and probably one best not discussed in public. Curiosity getting the better of me, I put on my glasses, for although I couldn't hear what they were saying, I know how to lip read! Yes, my secret is out, I can lip read. My mother taught me many years ago, and it has been a very useful tool. Now understanding what they were talking about, I was in a quandary for I knew the answer to their question, and yet how could I walk up to complete strangers, interrupt their private conversation with the solution, showing I had been listening (or in my case reading their lips). I hasten to add, I took off my glasses and did nothing! I was in a similar situation some years ago when having a scan done of my hip, and the doctor and  technician were engrossed in a conversation about me behind a glass window. I lay there watching them, and although couldn't hear a thing through the sound proof glass, I could read their lips very well. The technician was asking the doctor how I could lay there without screaming, as the scan showed clearly an AVN (Avascular necrosis of the bone) that was severe, he knew I had to be in unbearable pain. When the technician came into the room to remove me from the scanning machine, he was so sympathetic and gentle, I didn't have the heart to tell him I was on morphine which keeping me from screaming, not to mention my British stoic upbringing of not making a fuss. Sometimes, its best just to keep one’s mouth shut!

Good morning

Waking in the morning, it’s almost as if my body has lain still in one position the entire night and frozen. The stiffness and rigidity with which my body is encapsulated is incredibly painful rendering it difficult for me to move let alone actually get out of bed. I presume this is how most Parkinson’s patients wake up in the morning. This is how I start my day, and no doubt millions of others just like me.This may sound strange, but I have it on good authority that silk sheets make it easier to roll over and move in bed. Several people with Parkinson’s have told me this, so I shall give it a try. It’s amazing how just a shortage of a chemical in the brain, is responsible for changing one’s life so drastically, the repercussions of which fan out to the rest of the family and friends who are stoic enough to stick around.

Barbeque etiquette

I think most of us enjoy barbeques, the smoky charcoal taste turning any simple piece of chicken or meat into a delicious mouth-watering feast. Sitting outside in the pretty garden, flowers blooming, the pleasant spring weather a delight; what could be nicer than sharing a leisurely meal with family and friends? You are probably wondering what on earth a barbeque has got to do with Parkinson’s! Having difficulty with using cutlery, it is perfectly acceptable to use one’s hands at a barbeque. Those difficult chicken wings, meat on skewers or steaks which require an amount of dexterity in one’s fingers when normally eaten with a knife and fork, one is suddenly afforded the luxury of barbeque etiquette and able to use one’s hands. Everyone at the table has sticky BBQ sauce on their fingers and suddenly I don’t feel like a fool – for a change we’re all equal. What a delight to feel so at ease during a meal. I can see we’ll be doing a whole lot more barbequing when entertaining from now on. 

Family relationships cont.

I reiterate I am not a doctor, simply a women suffering chronic disease sharing my thoughts and feelings with you through this blog. To continue with yesterday’s topic, when a member of the family is chronically ill, much time, energy and thought focus on that individual. People are always so busy asking how I am; they may forget to ask how my husband is bearing up. Attention to other family members, in particular children, can sometimes unintentionally wane. Children may be old enough to fully understand and appreciate these unfortunate circumstances, but it does not detract from the fact that their sick parent often takes priority. Limitations on family trips and outings, even simple visits to the doctor or shopping (groceries or other items) all have to be adjusted accordingly taking into consideration my condition, and what should be a regular excursion often turns into a military style operation. Every facet of daily life has to be thought through, and this continuous endeavour can be exhausting for all the family. My daughter copes admirably, and helps me without question or hesitation, but I'm sure there must be times; it would be a sweet reprieve for her, not always having to think about my needs first. Being honest with your family; keeping the lines of communication open, and upholding a pleasant atmosphere in the home are just a few ways which help improve a challenging scenario.  

Family relationships

How Parkinson’s or any disease affects one’s family is a complex issue which I have only touched briefly on so far. The emotional and physical toll, not to mention logistics and financial strains that weigh heavy on a family whilst taking care of someone with a degenerative disease are not to be taken lightly. Many spouses struggle to such a degree that they can no longer continue, and sad though it may be, occasionally these cases end in separation and divorce. I apologise to any male reader as I do not intend to sound biased or offend, but statistics clearly show that female caregivers (probably due to our inherent nurturing natures as mothers) generally stay put and run the course. The numbers of male caregivers show that men unfortunately are often less able to bear the intense heavy burden and ultimately for self-preservation, bale. These are merely statistics, but I’m incredibly lucky and blessed to have a wonderful husband who is patient and understanding, steadfast by my side he supports me through the good and bad days. Despite staying together through thick and thin, both of us having positive cheerful natures (a great advantage), the worry of what lays ahead, and the strain of the days that are not so good, do effect this household. I would be a liar it I were to tell you differently. When I try to imagine how my husband feels when he sees me in pain, and there is little he can do to alleviate my discomfort, or he hears me shuffling my feet from the other room, or dropping yet another drinking glass, the sound of breaking glass must shatter his dreams of the life he thought he would lead. We fall in love, marry and bring children into this world, without knowing or having any guarantee of what the future holds. If your love for each other is strong, it will endure anything that life throws your way, and sometimes even make you appreciate life and what you have in a deep and profound way. Stay tuned, for tomorrow I will continue with this wide-ranging topic. 

First signs

The first signs of Parkinson’s are sometimes vague and subtle, often dismissed or lead to an incorrect diagnosis. Every patient is different, and no two people will experience exactly the same symptoms, therefore the signs can only be an indication. However, if someone has a number of, or all the following symptoms, medical advice should be sought. Generally the first signs are a slight tremor or shaking, possibly in the legs when you are sitting down, which was in fact the first symptom that I felt, but just on the left side. A change of handwriting is also a sign that something is wrong. Losing one’s sense of smell is yet another early symptom, but as this disappeared gradually, I didn't notice until my sense of smell was completely gone. Trouble sleeping; tossing and turning, disturbed nights is common to Parkinson’s patients. Stiffness in arms and legs, in particular when walking, if your arms do not swing, but stay rigid by your side, this is yet another sign. My husband noticed early on that my left arm did not move when I walked. Speaking, one’s voice can sound soft or horse almost as if someone has turned the “volume” down. I used to have a loud voice and don’t stop talking, so when my voice goes from time to time, this is one of the few symptoms that my household is quite happy about; for occasionally they now get some peace and quiet! Not standing up straight and having slightly hunched shoulders is another early sign. There are no standard or precise indicators for Parkinson’s, as every person is individual so these first signs are only a rough guide. Someone may experience just a couple of the symptoms whilst another might encounter them all. If you are at all worried you may have Parkinson’s I would highly advise seeking proper professional advice, preferably from a neurologist, who is experienced and capable of diagnosing neurological problems.