Hi, l am currently 75 yrs old and was first diagnosed with PD 13 years ago. My children were concerned l had quite bad resting tremor. I had deliberately ignored or denied it, thinking it was just part of getting old. I at no point thought it could be a degenerative brain disease.! For nearly 3 years and several medication increases and additions l was eventually told it may be due a stroke l had had some years earlier. Upto that point l didnt even know l had had a stroke as l had had no signs. But the DAT scan didn’t lie. It also showed changes in my left Putamen and Basal ganglia. My consultant decided to transfer me to stroke specialist. I was not unduly worried as the increased meds were basically keeping everything under control. Sadly my husband became increasingly ill with multiple co morbidities, i became his full time carer ,which inevitably greatly increased my own stress levels. My Jaw tremor became so bad l broke teeth thro the constant chattering and ended up being referred to the Maxillo Facial clinic for botulism injections in both sides of my jaw. I jokingly to my friends I had to have my botox beauty treatment. I have to have repeat injections every 4 months. My stroke consultant felt I may have some Distonia but also had definite parkinson symptoms. A further DAT scan was ordered which showed definite low uptake of dopamine, and the changes in Basal Ganglia had also increased. By now my husband was at home on palliative care. He died January 2025. 6 months later at a follow up appt with my Stroke consultant , the subject of DBS was brought up. As my non motor PD symptoms by now had dramatically increased. I agreed to be referred to the DBS surgeon for consideration of suitability. I was asked what l wanted from surgery, and told him, l would hope to have a reduction in number of meds l currently take , reduced tremors, and be able to get some sort of life back as l my get up and go had completely gone and l was just so exhausted. He asked me how would l feel if the surgery caused me to another stroke, and l just told him my quality of life would not possibly be any worse than it is. I was trying hard not to feel sorry for myself but if there was a chance surgery could help l was prepared to take that risk. I was told there were a number of tests to do and no guarantee l would be approved for surgery. The selection / testing period could take a year to 18 months. I resigned myself for a long wait knowing there was possible hope for the future. 3 weeks later l was asked to attend an appt the the Neuro surgical nurse. She asked me to do cognative test and gave me 3 different forms to complete asap. One was for 24 hour diary over 7 days recording my on and off times. One for assessing my anxiety and stress level and one asking about my support framework and my well being. Due to roadworks and diversions arriving late for the appointment there was no time to ask question, l was just told my psychology and movement assessment would probably not happen for 8+ months as there was a big waiting list . I would contine to see my surgical and stroke consultant meantime. I considered myself lucky because things were moving forward. 3 weeks ago l received my appt for the psychology and movement assessment for 21st Jan 2027.
For now my bravado has taken a back seat. I am very happy that it is all happening so quickly but have to stay grounded because there is no guarantee l will be found suitable. At the same time l feel very anxious , what does the future hold if l am not accepted or if l am and it doesn’t work for me. I have a good support team around me, but an added stress is my son has returned to live with me temporarily because l have all the disabled aids already installed at home from when my late husband was alive. My son is slowly recovering from a very serious work injury he got crushed at work sustaining multiple fractures and is unlikely to return to work again. I feel for him, the accident was not his fault. He has bad stress and anger issues over it , which he tends to verbalise to me mainly by shouting. He has never hurt me physically but his lack of empathy for me is hurtful. He is due to start talking therapy to try and open up about his anger at his work place and accident issues and then to hopefully take on board how his actions are effecting me especially with my own stress problem regarding my own health. He always apologises when he sees he has upset me, But to be honest l am finding it a bit hard. His company accepted Liability and his solicitor has told him when the case is resolved he should have enough money to buy himself a small bungalow. To be honest that time can not come soon enough.
Like so many of the people having to live with PD, it is a roller coaster journey. Days when we can’t help but feel sorry for ourself and other days when we are able to say Mr PD may be sitting on my shoulder, but l am not done for yet. Nobody can make us promises as to what the future holds for us, how well we do can only come from within ourselves. I know what ever my final diagnosis is l refuse to go down without a fight. No one can promise it will be easy, but there is still so much we can do, things to see, places to go.
I consider myself very lucky, l am getting my disease investigated and treated really quickly. I do know a lot of you have not been so fortunate. I dont in anyway want you to think l am boasting or bragging about how quickly things are moving for me now because that is the last thing l want to do. It is over 13 years since Parkinson first sat on my shoulder. 13 years of not knowing what the future holds or what my diagnosis really is. Now l have a glimmer of hope that things might get a bit better. Just like you l have to accept there is no cure at this time, but who knows what the future holds. I wish each and everyone of the best you can possibly be. As a community the support from each other is so important.
