Deciding what is best for you, in your particular situation is a personal choice, and can only be made by you. Relatives and friends with your best intentions at heart and a desire to help, may not fully realise the circumstances and what is right for you. I have spent two and a half years writing a daily blog from personal experience (much like a journal) with the intention of letting others in similar situations feel they are not alone, and writing for the Huffington Post once a week for over a year. I am participating for the third year in a university programme for student doctors in their first year of medical school, the aim for them to meet and interact with chronic patients. I have had a number of public speaking engagements here and abroad, some of which were to audiences purely of doctors and those in the medical field. What started off as writing a few poems about living with Parkinson's and Gaucher, without realising has over time snowballed into a full time campaign.
Although I am still in good spirits, remain positive, and my mind is as sharp as a pin, my physical health has deteriorated to some degree. I therefore had to re-assess my situation and my daily activities which brought me to a difficult decision. From the beginning of 2014, instead of writing each day, I will write on my personal blog just once a week (on a Friday) and continue writing my weekly articles for The Huffington Post. I hope this will alleviate some of the pressure and precious time that I spend each day sitting at the computer. I need to spend my energies on my husband and daughter. I type very slowly now, and it takes me far too long to write all that I want to, and this is preventing me from doing other things. I can no longer run at the pace I have been and find I can't keep up with everything I need to do each day.
I am very fortunate that my dear sister-in-law is a qualified Yoga teacher and she has been helping me with breathing exercises, and slowly will introduce me to some simple and gentle exercises that should be beneficial and improve my mobility. I can already see a slight improvement just from the breathing technique she showed me, so I have great hopes. I endeavour to do voice therapy exercises every day, and walk with the Nordic Poles (although I can barely manage ten minutes) plus physiotherapy exercises that I do laying on the bed (not to put weight on my hips due to the Gaucher). All these things take a surprising amount of time each day and are important to do on a regular basis for my physical well-being.