My Story

It took two years for a full diagnosis and quite a few concoctions of drugs for Dr Humberstone to finally say on the eve of my 40th birthday that I had Parkinson’s Disease.

I made a bold statement and said “then Doc you have nine years to find a cure or I will find it myself!” I thought nine years was quite long enough for me to live with such a disease, we both laughed… but I meant it. By now I was stuttering when I spoke and my Parkinson’s was getting worse but Dr Humberstone knew which way to go and arranged for my twice yearly visits to him. My GP made sure I continued seeing him every month without fail, regardless whether I was ill or not.

Through my Parkinson’s I got lots of chest infections and suffered with them so very much. I was constantly fatigued but didn’t know until many years later that this was ME (Chronic Fatigue Syndrome). Dr Humberstone tried to keep me going by prescribing more drugs.

My husband Chris was now my full-time carer and constant companion. I can’t put into words what my husband means to me except ‘love’.

As the years went by mental health would now take its toll on us all, my husband, family and close friends became carers in their own right giving support to both Chris and I at times when I started to doubt my mental state. I started to have hallucinations which were interfering with our lives on a daily basis, my mind was telling me things like I could not be of any use to anyone and I believed that my husband would be much better off without me. But I think God must have thought I would make a much better inventor than a life taker for I got that so wrong it was laughable.

In the darkest of times, our friend Sandra Worts has stuck by Chris and I throughout. At times when I was so fearful of everything she would be the only person I would see, calling on her in the early hours she would come round and find me on the carpet in a ball, she like my nurse gave tough love and got me going.

‘I became a believer of knowing your own body, what it could do and not do’

Sandra is very much thought of as a second mother to me and I am honoured that she now stands again with Chris and I on our Board of Directors here at Eye Guide MC Ltd.

I became a believer of knowing your own body, what it could do and not do. I lost my speech for four years on and off. But it was strange – each time I needed Dr Humberstone to hear that I had no voice, my voice, although weak, would come back and then fade.

My tremors in my tongue, for me, became a day long problem, as trying to say the words became harder. I made a small stick to hold my tongue down whilst I spoke and later found a Cheroot (a cigarette holder) would do the job just as well and looked ok. I was no smoker but found this to be a great device.

‘We will get this sorted out and you will come through this…’

In 2015 my Parkinson’s took a complete nose dive and it was winning the takeover bid, but a Parkinson’s nurse was introduced into my life at just the right time. We had raised money for the nurses over the years with different challenges but I had never actually seen one.

Ann Saunders stepped in to my life and said “there is no way you should be at this stage! We will get this sorted out and you will come through this.” She and her colleague at the time were true to their word and to this day I am proud to call her a friend and owe her so much. I now knew I needed to get well. Even my German Shepherd dog Yola started to become unwell. On the visit to the vets we were told I would have to get well to save our dog from pining for me, as she loved me so much and knew something was wrong. I asked my husband for one month to get well without interference from anyone. No visitors from doctors and nurses or family or friends and so he kept them away. It was very hard because they started to think he was keeping everybody away on purpose.

So I began examining my mind, and in total belief that my husband would keep to his word. I started to ask myself the deepest darkest questions and gave myself completely honest answers. I would cry in my sleep and my Chris looked on, which was so hard but he kept his word and said nothing. As hard as it was he trusted me. Then finally in I came from the garden where I spent many hours and dark nights and I said to Chris “I’m ok now, I’m ok.” We held each other for the longest of time but I was back and we were together again.

‘I was determined to not fight my disease anymore but to know it…’

Dr Humberstone later told me I had done what a psychiatrist would have done, but over a longer period of time and in a safe way. He said I could have done more damage taking my mind to places it had shut out in an uncontrolled way. I looked and felt better than I had done in years. He said he had his “old Sandra back” – and I was.

I was determined to not fight my disease anymore but to know it. We changed my pills back to a time I could cope, knowing my fatigue would put more strain on us both. Now working with Ann who gave me more time than I’m sure she should have, I ran everything past her and started to invent again as I had done with my light-up golf club which I made into a walking stick that lit up like a Christmas tree so I could be seen at night. My laughter started to return. Then one day Chris and I noticed I was veering to the right. I could no longer walk straight and then to make matters worse I started to walk in circles, so I began using my wheelchair full time instead of only on a part time basis, although my steering led to all sorts of problems.

A quick appointment came with my neurologist to be told my Parkinson’s had got worse. We also discovered I had a condition unrelated to Parkinson’s called Hemis-Neglect which is a non-awareness of one side of one’s world, mine being my left. I was told to wear a patch over my eye to help my walking. “How long” I asked, “for life” he replied. Thus started my road to find a way to walk straight without a patch. I asked my Chris for the use of his garage as I had done on so many times before and so began the journey to Eye Guide MC.

Once I could walk straight I wanted more, and through the love of my niece and a gift of a little knitting marker which I placed on my glasses, I found I could feel my left side. I could now feel warmth. From that day I did not stop. I wanted to find what else I could change to make my life better, always with my Chris looking on helping me, knowing when to step in and when to stay back as he had always done.

Two years later I invented the Guide you see before you. I walk straight, my speech is strong, my tremors are under control and I have full awareness of my left side and my hand writing is back to normal size and I can drive with the blessing of my doctors.

I did not cure Parkinson’s; I have control of it.

Without wearing the Eye Guide MC, my Parkinson’s is fully back with immediate effect but that’s ok, for this is me.

I am Sandra McDonough, the lady with Parkinson’s.