After having 3 different types of cancer, my symptoms were assumed to be from brain cancer. After quick testing including MRIs and DaTScan I have been diagnosed with PD. After the initial relief, the diagnosis of a degenerative disease has hit home and I'm scared. Friends say history shows I'm strong, but I just can't imagine living with physical constraints. Even the thought of having to tell the DVLA is overwhelming. But the biggest concern is losing my mind. I presented at the GP surgery initially with symptoms of tremors all down my right hand side. I thought that was my only problem. However, after being diagnosed and reading about wider symptoms I realise that PD may be responsible for my recent unusual behaviour patterns such as extreme anxiety including a panic attic. I'm waiting to discuss medication options with my GP. In my experience any chemical intervention has knock on effects. More worries, more stress, more shaking and falls. I'm not in a great place at the moment. Hope this is the right place for sharing!
Hi Jeanne,
Welcome to the forum. You'll find lots of friendly support here. However, if you would like some more advice about your symptoms, medication or just a chat please do call our free Helpline on 0808 800 0303.We are open on Monday-Friday 9am-7pm and on Saturday 10am-2pm.
You can also find more support information including local groups and publications at: http://www.parkinsons.org.uk/content/support-you. I hope this helps.
Best wishes,
Edwina
Moderation Team.
Jeanne
Welcome. This is the right place for sharing. This forum is well stocked with people who have been through some of the things you are facing. I understand what you say about being overwhelmed. I have no direct experience of cancer but I think you will find the pace of parkinson's interventions slower than with cancer. There are no sudden decisions to be made.
There are lots of possible symptoms of parkinson's but you should not assume that they will all happen to you. Parkinson's people often experience anxiety etc but don't rule out the possibility that things like this could be side effects of the stress and disruption associated with diagnosis.
The main medical treatment for parkinson's is with drugs which alleviate the symptoms. Some of them are really effective and can restore a lot of function. It's not uncommon for people to feel normal again after starting on meds.
Like you, I saw informing the DVLA as a big step. I needn't have worried. The most common outcome is that they will give you a licence subject to 3 year review. 11 years on from diagnosis I am still driving and still enjoying it.
I hope that helps. There is a lot to take in but you don't have to do it all at once.
Elegant Fowl
Elegant Fowl
Thanks for your thoughts on driving. It was reassuring to know that you are still driving 11 years on from diagnosis. My insurance company was happy to continue with cover simply with the knowledge that the DVLA had been informed.
Hi Jeanne,
Try not to worry. In my experience the meds are really helpful in dealing with the symptoms, and the anxiety diminishes with time. Hang on in there!
Frances
Jeanne
You have had 3 different cancers and survived them all and now pd.
I am very sorry to hear that, but you are obviously a fighter and this will serve you well.
What cancers did you have, what effect did they have and how are you now.
I would be very grateful for your reply
thank you
L
Leyther,
Breast, bladder and ovarian. Nicely spaced out over a few years to keep me on my toes! Lots of surgery, chemotherapy, radiotherapy and immunotherapy, amongst other medication. Thankfully, all in remission now.
Interestingly, I have just read the following:
"a group of medicines called phenothiazines which are drugs used for treating the vomiting and nausea that often accompany chemotherapy may cause secondary parkinsonism, because they block the receptors that dopamine usually binds to within the brain."
The only medicine I'm on now is chocolate!
J
Hi Frances,
I am slowly coming to terms with having PD, but getting more anxious because the news has sent my other half into a deep depression. He doesn't like the idea of being a carer or even the term carer. I'm the strong one in the family. Is his a normal reaction and if so does it pass? I don't think I can be strong for both of us.
J
Jeanne
Is your PD considered young onset?
Hi Jeanne,
I know my husband has found it hard---I was diagnosed in June. I have tried to get him to talk about it---not much luck.It has to be time suppose that sorts that. I did wonder about some counselling for both of us.
My next appt with the neuro is end of November. I might ask something about potential carers at that point. It`s hard to get your head around all of that.
Frances
Hi jeanne,
What a terrible time you have had. You sure didn't need a Parkinsons diagnosis. I may be on my own here, but I think what you've been through already is far more scary than Parkinsons, and if you're partner cared for you through that, then Parkinsons shouldn't be too bad. I've been diagnosed for four years now, at the age of 50, and I consider myself nowhere near requiring a 'carer'. I keep active, I look after my granddaughter two mornings a week, I take enough medication to keep me moving, no more and no less. I know I will get progressively worse, but I'm not going to give in easily.
What a blow for you reading that one of you're cancer drugs may have caused you're Parkinsons, especially when there is so much in the media about a cancer drug actually improving the quality of lives of some sufferers. I know lots of people hate the phrase 'stay positive', but, for me it works.
I note that you are waiting to discuss medication options with you're GP. I know many gp's are excellent, but they are general practitioners, I would chat about medication to you're neurologist, maybe in conjunction with you're oncologist, to make sure you get the best treatment.
I hope all works out for you
Ali
x
Hello Jeanne & Leyther
What a time both of you have been through, I have only praise for you both in persevering with the treatment and have both come through into remission, then to find you have parkinsons is a bit of a blow, it makes our crosses to bear seem trivial, but we all have to fight and I hope you both find the inner strength to cope with the future
Sending best wishes to you both.........Sheffy
Hi Jeanne,
you must have been to hell and back with 3 types of cancer to then be told you have PD must have felt like a smack in the mouth of huge proportion's but you came through it and came back out on your side so this fight is a bit different, the cancer could have killed you PD can't it is just a pain the the a*** because it will get worse keep up with your fight and I'm sure all of us on here will be in your corner xxx
I know I am xx
Ali P, good to hear something positive. I also look after grandchildren while their parents work. I also feel that it could be worse. We have to enjoy what we can while we can. Half term coming up and we look after 3 children for several days next week. Watch this space!
Hi Jeanne
i like you are recently diagnosed with a partner who is a real worrier. I am the strong one but together we have learned through this website and local group contacts that this is an illness which can be controlled as long as you don't let it control you. Please make some local contacts and keep posting here with any concerns you have. Like you I am yet to be prescribed meds and it will be interesting to see what effect they have.
Like Ali I certainly don't need a carer my only problem being a lazy left foot which gives me a bit of a limp. I can see that you have beaten a lot worse that PD so you know you have the inner strength to deal with this
Tom x
Hi Jeanne,
Was reading your posts and wondered if you have a Parkinsons Nurse in your area(I know not every area has one) but I found talking to the one in my area really helpful. I just googled 'Parkinsons Nurse' and the name of the town where I live and it brought up the nearest to me. There may also be some local groups who have monthly meetings where you can talk to people who can give support & advice. Sometimes it's just good to talk to someone outside your situation but someone who would understand the issues people with PD face. This is a great place to share how you feel & your worries there's nearly always someone who can help or just 'listen'! Take Care! Su. xx
Hi Ali,
I think my husband's and to some extent my own initial reaction to PD diagnosis was to think of the worst scenario we could.We have both calmed down somewhat and realised that I'm no worse today than yesterday. I just have a new label.
I am still thinking about avoiding drugs for as long as I can and have taken your and others advice and chatted with a Parkinson's Nurse as well as my neurologist and GP. Like you, I already keep fit, but I have also taken the advice of a Physiotherapist specialised in neurological problems. It seems my Pilates will be good for stretching and I probably ought to return to a dance class to help with balance and coordination. I also read today that boxing is good for tremors. Never thought at my age I'd be thinking of taking up boxing!
Thanks for your support.
Jeanne
Thanks for your support, Sheffy.
Leyther, have you also had cancer?
Jeanne.
Hi Tom,
I definitely don't need a carer at this stage. We do however have a friend in very advanced stages of PD and my husband just likes to cross bridges sometimes very early!
I have had several falls and more near misses which are apparently down to my gait and lazy right foot, but the problem is imperceptible to others and now I know what causes it I am trying really hard to improve how I walk and slow down when I turn. I do have tremors but they can be easily disguised unless I am particularly stressed. The only really debilitating issue I have right now is a damaged rotator cuff which I wrote about in a different post. I am still a regular at the gym.
I haven't had a lot of luck with local groups but did meet the Parkinson's Local Adviser this week and I understand that there will be a newly diagnosed meeting in the new year.
Thanks for your support.
Jeanne
Jeanne
No I have never had cancer at all ever, but like most people, unfortunately, I have family and friends who have and sad to say had. Currently, a close member of my family is in hospital this week to have a tumour removed, it appears to be benign but however much logical reassurance I receive its still a worry and of course there is the danger of nerve damage and disfigurement as its a facial growth.
When I responded to your post I had just been informed of the situation and the C word had been used which put me in a tailspin. The possibility of it spreading through the body was on my mind and I saw your post mentioned 3 cancers.
Anyway we can only cross bridges when we get there.
Re the Pd; you may not need a carer but you will be entitled to some benefits, if you dont need them thats fine but others reading in a similar position may need them and not realise they are available.
regards
L