Only carer for my husband diagnosed with PD last year.

My husband (77) was diagnosed with Parkinson’s Disease in August, 2022.
He had an operation on his spine in May 2012. About 3 months after that he started feeling fatigued. His GP referred him for several tests, ECGs, blood tests, lung function but nothing was found.
The fatigue, breathlessness continued. On sending him for a CT scan a small tumour was found in his right lung and was advised to have it removed. This was in May 2018 when a third of his lung was removed. After recovery he was still, or more so, fatigued and breathless.
Lower back pain started increasing and his GP referred him to an orthopaedic specialist who advised and carried out a decompression operation on his lower vertebrae L4/L5 in May 2019. On his discharge from hospital it was noticed that he had a tremor in his left hand. On more than one occasion he mentioned the tremor to his GP who thought there were other things more important to deal with. Previously he had been advised of an enlarged prostate gland and was being treated with medication. After his back operation he had to have a catheter fitted, was unable to pass urine when removed and as a consequence had to suffer the catheter for 8 months until he had the prostate lasered (privately) in January 2020. His back pain continued and had pains down his legs. His GP referred him (privately) to a hip replacement specialist and he had his right hip replaced, successfully in October 2020. Pains were then in his left hip and again, referred by his GP he had the left hip replaced (privately) in November 2021. It was on one of his physiotherapy sessions that the physiotherapist noticed the tremor and his rigidity of gait. She immediately phoned his GP for an urgent appointment the next day. This was now January 2022. The GP then referred him to a neurologist and he eventually, with a lot of pestering, had an appointment with the neurologist in August 2022. Madopar 3 times a day was prescribed. In September 2022 he had an appointment with the Parkinson’s Specialist Nurses who referred him for physiotherapy and occupational therapy (have not had appointments with either). Have had a visit from an area Specialist Parkinson’s nurse with further referral to physio and occupational therapists.

He is now on Madopar 4 times a day which doesn’t seem to have made any improvement. In fact some days he feels worse. He also takes paracetamol and naproxen for back pain; statins, ramipril and lansoprazole still suffers with extreme fatigue and is very frail, unable to go out for a walk but potters around the house. Does exercises including 15 minutes on an exercise bike every day. His legs are very weak but he perseveres to get upstairs, doesn’t know how long he can manage the stairs.
We have some equipment but await the Occupational Therapist’s recommendations.

Hi Franh,
We’re very sorry to hear your husband has had to endure so many challenges. Parkinson’s symptoms can often get ‘lost’ among the symptoms from other conditions, and unfortunately delays in diagnosis are common due to this complication. It sounds as if your medical team is on top of his changes, which is good to hear. Just as a reminder we have a free and confidential helpline where you can ask prescription questions, along with any other queries you might have, and they will be happy to serve as another resource in addition to the feedback from our community here. You can reach them on 0808 800 0303.
Thank you for sharing, and welcome to our community forum,
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