Hello From SouthEast London


#1
Hello,

My name is Karen and on Friday my husband was officially diagnosed with Parkinson's. Basically, he went to the GP for a stiff arm, his private insurance picked him up and gave him MRI and nuclear scans and found it to be early onset. My Father in Law has Parkinson's as well.
I was just looking for some information. The more I read the more I realize that there isn't much information until the symptoms show. Right now the symptoms are so vauge it's a stiff arm, the night tremors and declining sense of smell.

I'd like to have a nose around and ask some questions as I'm quite upset about the diagnosis (although husband is very nonchalant about it all!). I think the first decision is about medication and I want to support my husband in managing from and early as some say this has a better outcome.

#2
Hi Karen. Im sorry you and your husband have found yourself in this group but hope you will find this forum as helpful as I have.

Im 46, live in SW London and was diagnosed a month ago after mild symptoms for 3 years.

I have been doing a lot of reading about what best to do. My consultant says he doesnt want me on any medication as he doesnt think I need it.

My take on the situation (some of this may be disagreed by others) is that it is good at this time to think carefully what best for you/DH to do. There are some areas of disagreement:

1) Some consultants do seem to put newly diagnosed onto medication as they think some might be neuro protective. My consultant doesnt seem to think anything would help at this stage.

2) You should also consider if there may be any medication available through a medical trial (ie in development) which might be better to access (ie better than any medication available on the totally developed market). As your H is not on any medication he would be eligible for some of the trials. This is probably controversial but I have seen this advice on other forums. There is a medicine called Cogane (regarded by many as promising) on stage 2 of trials which I would have gone onto the trial for (but Im not eligible due to being a fertile woman) Fertile men are taken. There is a London based trial centre.

3) You should consider if any diet or exercise regime would help your H. There are very different views on this too. Many PWP (people with Parkinsons) do believe that exercise helps. Ive come round to this point of view as I think any improvments in physical condition must help longer term. I am increasing my levels and types of exercise. There are lots of differing views on substances/foods that can help in diet. My consultant thinks nothing helps. Others on this forum do recommend foods.

4) You should research any medication carefully before taking it. There are side effects to many. Myself I intend to stay off levedopa based medication as long as possible as currently it seems to last many individuals only a certain length of time. But for others of course with more significant symptoms it is a godsend.

I do understand your husband and you having differing reactions. I think the thing to understand is that it takes time for everything to sink in and you and he will have more reactions/feeling to the news over the next few months. Keep chatting on the forum

#3
There are actually 3 London sites for the Cogane Stage 2 Trial

The Royal Free Hospital, NW3 2QG (Tel: 020 7 830 2012)

Kings College Hospital, SE5 9RS (Tel: 020 3 299 8336)

Charing Cross Hospital, W6 8RF (Tel: 020 8 846-1186)

I heard that they were still recruiting until the end of November. I started the trial 4 weeks ago, and it lasts for 6 months. You have a 1 in 4 chance of receiving the placebo (ie no drug).

Peter

#4
hi Karen
Sorry to hear of your husbands diagnosis. I would suggest that you search on here for posts re Azilect, also known as Rasageline. It has 'unproven' as yet, neuroprotective qualities if taken in early stages of PD. It's definitely worth considering as a starting point for meds.
All the best
Carrot

#5
Hi Karen Welcome i am new to forum myself i was diagnosed approx 1yr ago only joined forum last month it helps to read others letter whether they have got pd or a carer.MY partner has not accepted i have it he thinks the problem tremor in right side arm and leg is caused by disc problems in my back.I have also had nuclear dat scan which i understand to be the closest to 100% correct which there is.What has interested me are the people who do not take mediacation yet i did not realise we had a choice silly thing to say but the shock of being dx i just did what i was told. I am now going to check with pn because started on 6mg requip pyt up to 8mg recently and i am worse.Feel i can learn al lot from the forum.I come from south London to years ago moved to Kent I'm interested to know what hospital your husband is under.

#6
Hi all, thanks so much. Carrot, especially thanks for the information. I'm looking forward to lurking around a bit and trying to make informed decisions with my husband.
He's actually on these forums too! He found me on here, so it seems we're on the same page at least.

Hopeful, he's not under a hospital yet. he is seeing a consultant on Harley Street at the moment for diagnosis and again in January for follow up and to discuss options.
Thanks again everyone. x

#7
hiya karan ,im ali ,im 42 and ive been dx for 11 years now.when i was first dx i did not no nothin bout pd,and belive it or not im still learnin now.i was put on stavelo first of all,ihad too opions ,to make sure pd was the correct dx,cus it was hard for me to accept it at such a ealy age.i was tested for ms first,cus me moms mom had it and thats heritery.when you say stiff arm for your hubby ,i quite understand that,cus i had it in me sholder and was first bein treated for a year for frozern shoulder with quaterzones,oberversly was not workin for me cus it was pd.anyway there good surport on the forum ,and lots of info else were as well for you to resurch .good luck and if you wonna no anything dont hesitate to ask or pm me,i dont mind x:smile:

#8
Hi wicklesskaren, I was dx in august at the age of 50. Of course it was a shock to the whole family, but it could have been a far worse diagnosis. I am on 10 mg of selegiline daily, I also do daily palates ( investted in a £5 DVD from amazon) and physio under the instruction of a physiotherapist I see weekly. I have lost some weight and keep very,very busy as I am determined this will not get the better of me. The only side effect of the selegiline for me is disturbed sleep - but this may be down to the pd. I also will not take levadopa for as long as I possibly can.