Coughing & Gagging

If you suffer Parkinson’s you may be familiar with the horrid phlegm problem!

Sherryl Klingelhofer, who took care of her father with PD and has dedicated herself to helping others in his memory, has so much good advice to offer, I had to share the following useful tips with you:

“Here’s an idea if you are already dealing with this common Parkinson’s problem!

We had a Physical Therapist show us an exercise to help the body "remember" how to swallow that helped Dad clear his throat a bit.  Doesn't get RID of the phlegm, but made it easier to deal with.

SIT UPRIGHT, make sure the head is over the torso and the torso is not leaning back or in a concave shape that would curve the oesophagus or compromise the entry in the throat. If needed, put a small pillow or rolled towel behind the spine against the back of the chair to assist upright posture!

Cough. Drink a SIP of water. Cough. (you may need to swallow, do so with or without the sip of water)

Wait and repeat about half a dozen times. Do this a couple times daily in between meals, but also try it BEFORE eating to jump start the brain.

That laying back in a bed or lounge chair is a real booger (we might just as well stay in icky-mode)! It lets the phlegm sit right on the "swallower", so positioning is really important!  Next time you start the choking, shove your hips back into the chair and lean slightly forward to cough/swallow.

You can practice opening and closing the throat if swallowing is being compromised!  And since you never think about keeping the muscles in the throat active, until after the fact, begin these now to avoid future issues!

Say “X” then “R” several times (yes, out loud so it can be heard!)---do it slowly and pretend you telling someone how to enunciate and say them correctly!

Say “QUICK-QUACK-QUIRK” several times as above

Make a fire engine noise by saying (loudly!)  “rrr-RRR-rrr-RRR-rrr-RRR” and make it go up and down as they do:  you will feel your throat at work!”

Eating Out

Going out to eat is a leading social activity, but for someone living with Parkinson’s it can become a little daunting. Self-conscious of bad posture and poor walking, shuffling as if 100 years old, it may be just in my imagination but it’s as if all eyes are upon me. Eating proves difficult and trying to choose something from the menu that requires little dexterity, finger food being the first choice, where a knife and fork can be politely discarded. I used to love going out, but these days it’s a different story. Just getting showered, dressed, doing my hair and make-up, takes every ounce of energy. This is not counting the emotional energy required when going out. I can spot someone with Parkinson’s a mile off, and no doubt I stick out in the same way to fellow sufferers, with those familiar tell-tale signs we all come to recognise.

I was taken out recently for lunch to a nearby café and was amused to read the rather imaginative menu. There was a “Snow White Salad” and a different salad named after each of the seven dwarfs. A “happy salad” sounded positively inviting, and I would have happily ordered it. However, I don’t think the “sneezy salad” would evoke the same reaction, and I wondered if the chef added a secret ingredient I’d rather not know about. I wonder if this is the least ordered dish on their menu? Likewise the sandwiches also bore names of well-loved characters from children’s fairy tales, and we ordered a Pinocchio and rather fitting, yes you guessed it........a Geppetto sandwich! 

Quality of Life

Over the years I have been asked by doctors and health officials to fill in a “Quality of Life” questionnaire appertaining to Gaucher and Parkinson’s disease. I understand this can only give the doctors an indication of how the patient perceives their illness and how well they are coping, but I believe this test leaves much to be desired. Firstly, there is the question of background. I was born in England and once when filling out one of these questionnaires in the USA, I realised that although the British share a common language with Americans, the differences between us culturally is remarkable. I am quite sure my answers on the American based questionnaire bared little relevance to my true situation and if anything gave a false picture.

The answers given – usually multiple choice style – do not take into consideration cultural differences nor how a disease can have very different repercussions on an individual. Since we are all very different, the answers are naturally subjective. There is also a matter of honesty. There are usually very personal questions relating to one’s sex life, depression and even suicidal thoughts. How many people really answer these extremely intimate questions truthfully? Doctors may be surprised to find the answer is: very few!

I don’t know what could be created to replace this system of “quality of life” questionnaire that no doubt most people have filled in at one point or another, but in my opinion, the present system helps neither doctor or patient. 

Men V Women

Men and women are intrinsically different. I am not talking about physical differences – I am referring to the psychological state, where one’s emotions can either make or break a situation. It is in a woman’s very nature to question, persisting in getting not just one answer, but several if not satisfied. Men and women handle ill health in very different ways. Women usually share with one another, thereby alleviating some of the isolation experienced by anyone living with a serious on-going long term disease.

Coping techniques are important tools in living with ill health. Women are usually more willing than men to open up, revealing feelings that are often kept hidden. Getting to the root of a problem, not leaving anything hidden and uncovering difficult topics that require airing, is a healthy mental attitude. Like peeling back the countless layers of an onion, revealing oneself can be scary and evoke feelings of vulnerability. Anything worthwhile in life takes work, energy and motivation, so don’t be afraid to peel back those onion skins, to reach your full potential. 

What have I been up to this week? With a young puppy in the house, life is not dull that's for sure. Grab your cup of coffee and take a moment to read my latest article in The Huffington Post.

Gaucher Film Contest

As an advocate I have been sharing my story, in the hope of bringing greater awareness to Gaucher disease. Story telling is a wonderful way of enlightening others about a rare disease. It was with this in mind that I wrote a collection of poems which has been made into a book and is available on Amazon.

I decided to share my story through poetry, recalling my early years to adulthood, which some may find resounding similarities to their own experiences. I hope fellow Gaucher patients and their families will know they are not alone, and realise just how far medicine and technology has come in the last 50 years. Circumstances were very different when I was diagnosed, and thankfully over time great strides have been made.

I am honoured to be a judge on the international panel for "The Spotlight on Gaucher Film Contest" aimed at patients and their families. The contest encourages those living with Gaucher disease, to tell in a unique way the story of how they live with a rare disorder. To find out more, click on this link and read about an exciting opportunity this summer to become involved, or read more in my article in The Huffington Post.