Hi - I'm a newbie on here!


#1
Hi,

I have just been diagnosed with PD at age 50. The symptoms started with left leg tremor almost 2 1/2 years ago - just after my 25 yr old son died and while nursing my hubby through cancer. Amonst all the trauma my GP thought the symptoms were side effects of some tablets she had given me. So stopped them. Symptoms continued but I was caring for hubby 24/7 so I put it all down to exhaustion and from lifting hubby. Many months later, my dear hubby age 50 was diagnosed with PD which had been misdiagnosed as chemo side effects. Once diagnosed he was treated very well for the remaining 6 months prior to succumbing to the dreadful cancer one year ago. After he died, the tremor spread to my left arm and I got a little scared, but GP thought it was all a part of the stress of losing my son and husband and I agreed. However, while seeing a rheumatologist for the pain on my left side, he asked me to see a neurologist friend of his who did a DaT scan and has finally diagnosed me with PD. I feel relieved in one way because I now know what all the weird symptoms are and that I'm not going mad, but I'm shocked that a husband and wife can both be diagnosed with PD at the age of 50!!! We were obviously not blood related! This also makes me really worried for my daughters - are they likely to inherit the PD?

#2
hello julie & welcome,
what a terrible time you have had. I recognise the feeling of relief when a dx is finally made. Well done that rheumatoligst! Hopefully your neurologist will be able to establish a drug regime that will miminise any troublesome symptoms, either now or in the future.
I can understand your concern re your daughters. My understanding is that a susceptibility to develop pd MAY be inherited, but this does not necessarily mean that your daughters have inherited it or that they will inevitably develop pd. Perhaps you might dicuss this worry with your neuro?
I hope you gain as much from this forum as i have in terms of information , support and now & then a little fun.
My very best wishes to you Julie

#3
Hello Julie - welcome to the forum where I am sure you will get a lot of support. You have had such pain in your life and now to be diagnosed with PD,life just doesn't seem fair sometimes. I too was relieved to have a diagnosis and had imagined something far worse.

I am not sure about inheriting PD, my Mum and Dad didn't have PD and although 2 of Mum's sisters had it their children don't have it!!

With the right medication I still lead a fairly active life and still work 2 years after my diagnosis.

Hope to see you around, there is always a welcome in Ali's cafe.

Take care
Lizzy x

#4
Julie
welcome. I know that stress makes the symptoms worse so I can't begin to imagine whatt you have been through.

I hope you find the forum as positive as I have done.

Others will be more expert than I am but I think that your Neurologist will be able to determine if there is a risk of your daughters having inherited a predisposition to PD

Elegant Fowl

#5
hi julie, i am so sorry to hear of your loss it must be extremly hard for you with all that to cope with and then being diagnosed with pd, my sister in law lost her husband last year and her 6 year old daughter 21yrs ago she also has recovered from breast cancer, she is 47 so i can partially understand what you are going through she just takes each day as it comes she has 2 lovely sons and without them i dont know how she would cope, we all support her as best we can, its hard for her and the boys but to go through what you have and then told you have pd i just wonder how cruel this world can be, you sound like a strong person we are all hear for you anytime speak to you soon sue.

#6
Hello Julie,
I was diagnosed three weeks ago and I know how you feel. At least you know what it is now and there's so many drugs and research going on so don't feel too down. I joined this Forum, never done this type of thing before, and people are so lovely and informed, so you'll get help.
I was really interested in your story because mine started with trauma too. There's no PD in the family, and although my trauma was different I know how I felt as I went through it. I truly think this was what initiated it.Anyway we can all hope for that cure. Take care and lol, MaryOwen

#7
HI,
Thank you all for the encouraging messages. I'm finding it difficult to talk to my three girls (ages 26, 25 and 19)as they have all beem through so much already and my eldest is a doctor! She qualified in June and I think she's finding it the hardest 'cos she knows too much! When I picked up my prescription today, local pharmacist told me if I get too bad they will stop me driving! I live on a ridge of a hill 2 1/2 miles from the nearest public transport and really need to drive. Have any of you had to stop driving? It's looking more likely that I will have to sell my house now and move to a bungalow near civilisation :) I'm trying not to panic but have loads of thoughts running through my head! While I was my husband's full time carer, I developed my hobby of wedding cake designing and making and thankfully, its taken off quite well. The PD is on my left side so as I'm right handed I can still do ok. I'm working on a wedding cake for a lady who is getting married in Buckingham Palace in November so that's keeping me occupied.

Thank you all for listening to me ramble on... Julie

#8
Julie
You need never feel shy about talking about your hopes,fears,doubts etc on here.

I was dx about 5ish years ago (provisional diagnosis 2005, confirmed 2007) and I'm still driving and don't anticipate needing to stop any time soon.

As described elsewhere on the forum you need to tell the DVLA about your condition. There is a DVLA form imaginatively numbered 'PK1' on which you describe your symptoms, meds, neurologist name etc.
I think my experience is typical - DVLA will check with your neuro then issue a 3 year licence. Every 3 years you repeat the process. I have never been a fan of the DVLA but I have to say I cannot fault them for their handling of my driving licence. The service was swift and painless (and free).

Car insurance company needs to be informed too. I expected to face a premium increase or similar but this was not the case.

Elegant Fowl

#9
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Hi Julie, welcome.

I'm now 61 and was diagnosed 11 years ago at 50.

However with the benefit of hindsight it becomes clear that the PD had been with me for at least 30 years before then. Whenever major stressful events occurred in my life they resulted in more symptoms, or the permanent worsening of existing ones. These changes sometimes happened even though at the time they may have gone unnoticed, or were noticed, but no cause could be established.

Major traumas which have commenced/influenced the relentless progress of my PD have included my mother's death (when I was 20), redundancy (41), father's death (47), early retirement (53), financial collapse (57) and a court trial and acquittal (59). After dx the same routine continued whenever some crisis occurred. I'm therefore convinced that (certainly in my case, and both before and after dx) PD is initiated by some personal catastrophe. Deterioration then proceeds in steps, NOT following any predictable straght line.

All subsequent decline, and therefore one's ongoing quality of life and life expectancy, are therefore dependent on the removal of all kinds of stress - easier said than done of course.

Shep.
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