Denial

One automatically assumes that it is the patient who is in denial, but there are sometimes circumstances where the one in denial is the caregiver. Understandably so, after any diagnosis, life may never be the same again. It brings everything into question, and plans or dreams for the future have to be altered accordingly and in some cases shelved. Disappointment and frustration at a situation we cannot control can appear overwhelming.

Taking Parkinson’s medications, is a fine balancing act to receive optimum benefit, whilst trying to take the minimum amount of medicines one can at the present stage. Understanding the many complex difficulties incurred by those suffering the indignities of Parkinson’s is not easy. It may be that a caregiver just doesn’t get it, can’t appreciate why and how the many side effects and symptoms, despite medication, can’t be controlled some way.

Turning a blind eye doesn’t help anyone. It can only cause friction and upset between sufferer and caregiver. Yet too much attention can feel like being smothered – so it’s a fine line and understandably not easy for either party.  

Being a caregiver, and then finding the tables have turned is a common scenario. I have written about this topic in The Huffington Post.

The Scores on the Doors

I’m not sure who first said this line: “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” but I find it very pertinent and can relate. This is what life is, and making the most of it, no matter what your circumstances, is by far the best plan. Since being diagnosed with Parkinson’s, I live very much in the moment, and make the most of what I have.

If you too suffer from Parkinson’s you no doubt have good and bad days like myself. I live for the good days and get through the bad days as best I can. What a peculiar and unpredictable disease.

Naturally there are times that are terribly frustrating, such as socialising. When  invited somewhere and Parkinson’s decides to butt in where it’s not wanted, no amount of resolve helps. When this rotten disease is in the driving seat, one has to gracefully concede. It’s not a matter of giving up or giving in, but realising how the disease works and knowing when to fight and when to concede. So the scores on the doors today are Elaine 0 – Parkinson’s 1, but tomorrow will be another day!

When you’ve raised your children and taken care of a parent, now finding you are the one who needs taking care of is a hard pill to swallow. But who cares for the carer? This is the subject for my article in The Huffington Post this week.

Take a look at this YouTube clip, a very original idea on how to draw attention to a cause. They then go on to show you behind the scenes, interviewing one of the participants who happens to be a Parkinson's patient. This clip speaks volumes and expresses exactly what so many of us experience and can understand.

Drinking Tips

I find drinking carbonated water not only is really thirst quenching, but also helps when I’m having difficulty in swallowing due to Parkinson’s. 

I couldn't find any solid medical evidence or data, but many suggest drinking tonic water, helps with painful muscle cramps caused by Parkinson’s. Apparently it’s the quinine in tonic water that is believed to be the helpful ingredient here.

To prevent spilling, I don’t fill a glass with more than two thirds. I keep a small plastic bottle of water (500 ml) on my night stand which is very helpful during the night.

Steering clear of drinking caffeine later in the day possibly helps a little in reducing sleeping difficulties. I was drinking herbal tea, but realised after a while that it did in fact contain caffeine. I’ve found it necessary to check very carefully the ingredients listed on boxes of tea, even when it states herbal tea, to check if it contains caffeine.

Everything in moderation, except smiles, love and laughter. How many times have you heard it said: “drink plenty of water”, but how much is “plenty”? I have written about this subject in TheHuffington Post this week if you’d like to take a look.

Disabled Friendly Hotel Rooms

In a hotel recently, I noticed there were two peep holes in the door to the room, one regular height and one at the height of a wheelchair. The bathroom was generous in proportions, plenty of room to manoeuvre a wheelchair, no lip on the shower floor making access easy, a sturdy pull down seat in the shower, well designed soap dishes of varying heights, toilet with handrails and washbasin with no vanity unit, to enable someone in a wheelchair to use the basin with ease.

The only fault I found with the entire room and bathroom, was that they hadn’t taken into account someone in a wheelchair wanting to look in the mirror above the washbasin. The mirror was positioned far too high making it impossible to see one’s face at all from sitting in a wheelchair.

I wonder who exactly designs a hotel room for the disabled? Do they hire someone  who is especially trained and has experience in interior design for the disabled? Or does the interior designer of the hotel go by the seat of his pants, and hazard a guess, hoping to think of everything necessary?

Losing a friend

Losing a friend is a heart wrenching experience, even if that friend has four legs and a wagging tail. A dog has a way of capturing your heart and becoming part of the family.

We brought home a darling 8 week old Dogue de Bordeaux puppy 91/2 years ago, which was before I was diagnosed with Parkinson’s disease. I had dogs growing up, and therefore trained Buffy successfully myself with all the basic usual commands. Once I was diagnosed with Parkinson’s and the symptoms started to appear fast and furious, it was clear that Buffy’s instincts began to kick in. Although Buffy was never formerly trained, she took on the role of assistance dog and proved herself by saving me on more than one occasion. Certain breeds are preferred as assistance dogs, such as the Labrador. Not all dogs possess the necessary traits to become assistance dogs, and only a professional trainer can really ascertain if a puppy is suitable or not for this purpose. 

I have fallen several times, and Buffy would stand quite still by my shoulders, taking my full weight helping me to get up. I was choking badly on two separate occasions, but Buffy instantly knew this was not a normal sound and fetched help immediately. Buffy would always know when I was having a bad Parkinson’s day and when I was suffering chronic bone pain from Gaucher disease. If I felt down or simply unwell, she would follow me around and not leave my side, watching my every move.

I miss Buffy's huge presence terribly, but am grateful to have had such a wonderful companion dog who made me feel safe, and took a little worry off my husband’s shoulders when he was out working. I have written about Buffy in this week’s article for The Huffington Post for she was a friend till the end.