Despite Covid19 I have had an MRI scan, nerve conductivity tests and seen a consultant BUT I thought I had a trapped nerve in my left elbow so when last Monday they told me I had Parkinson’s it was like being run over by a train. Particularly as I was alone. I have just got my prescription for Sinamet Plus today and am waiting to talk to a Parkinson’s Nurse. My head is all over the place, and how I am going to tell my mum who lives 3 hours away I have no idea - I don’t know when I will see her and I certainly can’t tell an 85 year old over the phone!!!
Hello there and glad you found the forum. Your reaction is entirely understandable. First thing to say is don’t panic, easier said than done I grant you but what you have just now is shock and you need to give yourself a bit of time just to take it on board. I am going to ask you to take this on faith because you probably won’t believe it but you will be ok. I’m not going to insult your intelligence by saying that as if it’s nothing, Parkinson’s is life changing but not life ending, The early days are difficult but things do settle. It seems to me there are two immediate concerns in your post. The first is your coming to terms with your diagnosis and the best advice is to take it slow, baby steps. In most people it is slow moving and little if anything immediately changes. Don’t go mad reading everything in sight because you will end up feeling like your world has ended in all probability and it hasn’t, Concentrate on what you need or want to know and leave it at that. Parkinson’s UK website has good info for newly diagnosed and there is the help desk too as well as the forum. I hope you have some support but even if you are there will always be help here for whatever is your mind, we may not always agree but we don’t judge.
Next is your mum, not helped by the lockdown. If you really can’t manage a phone call which is understandable but may not be as hard as it seems, what about a note. It doesn’t have to be long. I wrote to friends who are not local basically saying I didn’t want to put you in the difficult position of hearing the news on the phone and not knowing what to say… ,
Do hope this has helped a little. You will be ok
Sending best wishes and a virtual hug
Hi Andree, my sympathy goes out to you. I found myself in similar situation. It was my elderly dad in my case. My mother having passed many years earlier. I couldn’t tell dad that his ‘little girl’ had Parkinson’s. He lived very close, within walking distance, saw him mostly every day. I told my sister and younger brother, my only surviving siblings at that time. I told my sons and partners, and my dearest friend. There was no way I could bring myself to tell my dad. He would have been heartbroken. Following the sudden, tragic,death of my elder brother I watched dad grow old. He had been a strong, healthy, fit man, but my brothers death, and the loss of mam was too much. I didn’t tell my dad about my diagnosis, it was taken out of my hands. He went downhill swiftly, dementia, then death.
I hope you find a way to share with your mam what you have to say. Hopefully you will get to be with her soon, as you said, it’s not the news to hear over the phone. Be positive, tell her it’s different now, as she will think of elderly people she saw suffer with Parkinson’s when she was younger. It will be difficult for both of you, but I hope you have your mam around for some time yet, and her quality of life is good.
My best wishes to both you and your mam, I hope your Parkinson’s does not create too many difficulties for you, and you remain stable for many years.
You will be fine.
I know we are all in the same situation not being able to hug our loved ones my mum has a partner so we can’t form a bubble with her, our bubble is my husbands mum and she like my mum is 3 hours away from us.
My mum had a stroke a month ago which is why I feel I need to be with her when I do tell her. I don’t want to bring on another stroke.
The kids have been great and gone straight to Parkinson’s Uk and found the positives. It does not help that I had sinus cancer last year and am still getting over that - 30 sessions of radiotherapy on my nose is not very pleasant.
Today I have taken my first Sinemet Plus so looking at the positives let’s hope that helps with the tremors and by the time I see mum I will have slept and the bags under my eyes will have gone. Thank you to everyone xxx
Thank you I know I need to get my head around this and yes I am still in shock.
Andree, you are probably more concerned about mam than yourself. Before speaking to her I think it would be beneficial if you spoke to your Parkinson’s Specialist Nurse, or support on this site. You need to settle your mind, and gain a hold on your diagnosis. You say you have fought sinus cancer. That’s a scary one Andree, and I imagine your post operation treatment was hellish. (I’m in recovery from a bad breast cancer mastectomy , plus second operation due to problems, followed by twelve months chemo therapy.) Parkinson’s is tricky to understand as Parkinson’s is different for every patient. Some have a whole span of symptoms, others far less, for some it physical difficulties, others maybe emotional, mental health issues, or a mix of both. I am still learning, everyone involved in Parkinson’s is. Be prepared , as there are not always answers to questions. Think of a huge umbrella, it covers many, many symptoms, or ailments, but you may only have a few rained down on you. Change is gradual, you could stay as you are for some time. Be clear, be calm, and don’t rush ahead of yourself. Continue to do whatever you have been doing, you may need to make slight adjustments as time goes by, but that goes for all of us eventually…ageing. I’ve said too much now, don’t want to swamp you. Keep a diary, jot down anything different you notice. That can be helpful. I’m 67, diagnosed on my fiftieth birthday! First went to GP because of pain and strange physical problems when in my early thirties. It went undiagnosed all those years, had my family, worked, did the whole mam, working, keeping home. Even had a late baby when I was forty-five. Now I look back and it all makes sense now. Why was I so unbelievably exhausted most of the time? Friends and colleagues didn’t seem to be. I thought, they must get some help, or, don’t do as much as me. Not that I didn’t love my life, I did. It fell into place, made sense.
You will be fine, be kind to yourself. Rest when you need to, do what you can , when you can, and adjust to keep yourself as well as you can.
You will be fine Andree, it’s the start of your journey with Parkinson’s, put yourself in the driving seat babe. X
Hi Andree, are there flights between where you are and where your mum lives? My husband was diagnosed with parkinsons about 4 years ago and they have recently changed the diagnosis to parkinsons plus. We have continued to travel, in fact we were in India when lockdown happened there. We flew back to the UK during the UK’s first lockdown and have been virtually housebound since but we will continue to travel once covid-19 is defeated or controled. Ny husbands main problems are mobility and balance but the airlines are really good at providing transport arou d airports and to the aircraft. Sorry a bit long winded but the point is that people with disabilities can still travel and we find flying quite easy. I also have a disability which is one that doesn’t show but I also have help when I fly. It is worth thinking about.