Hello everyone. I'm a 55 year old mother of three lovely ( grown up) boys and I currently live in France with my husband who is working out here temporarily. All three of our boys are living and working/ studying I. The UK.
I was diagnosed with Parkinson's two years ago, having being referred to a Neurologist by my GP because of a tremor in my right hand. I had all the usual checks and a 'DAT' scan . The scan at that time was not particularly conclusive though my Neuro stated that he was still sure I had the disease as I had no right arm swing, and 'gait' problems. I was very shocked by the diagnosis and like many of you out there have found it really hard to accept, and believe!!
Up until two months ago I have refused all medication, but more recently I developed a 'bouncy' right toe and foot, and bizarrely have felt very 'jelly like' internally so I'm now on my second month of 'Azilect' , I feel better internally but my tremors have not improved significantly. I saw Neuro again last week and he's now added 'Requip' into the prescription - this scares me, and although I've collected the script I haven't yet started it. I'm hating the idea of taking all these meds. The trouble for me is, although my Neuro speaks English, I feel it's not really good enough English for him to fully understand me, when I try to explain my anxieties.
Basically, I'm really scared about the future, I'm still really struggling with acceptance, and I feel very alone with it all. I do speak reasonable French, but my understanding is poor! My husband is really supportive, but the nature if his job means that he is rarely here. He is trying to get us re located back to the UK.
I'm hoping that we will soon be back in the UK as I could really do with being a member of a local support group or similar.
i lu avec intérêt de votre sort , mais je sais si peu du ventre de gelée que je ne peux pas aider. cependant, son 7,56 si quelqu'un doit bientôt être là pour vous pointer vers la ligne d'assistance pour ces questions nous l'espérons avant votre fenêtre en demi wifi heures est en place . Je parle français comme je ne peux pas mettre en place le drapeau tricolore en raison de difficultés techniques .
par pour l'instant
The feeling of isolation is hard. My GP feels that I do not need a Parkinsons group yet. This is all very well,but it`s hard enough coming to terms without feeling on your own. At the moment I am still keeping it all to myself, only my husband and one good friend know. I`ve not told my kids.
The Sinemet is effective in that it does suppress my tremor.Otherwise, a combination of bloody mindedness and drive get me through more difficult days. I do exercise regularly, and look after grand children, which all helps.
I wish you good luck. There is a need for more support for some of us. I`m seeing my GP just to ask him....
I'm sorry to hear that you are feeling isolated. Please do have a look on our website for some ways to find support and share experiences with others: https://www.parkinsons.org.uk/content/support-you
Your description of your case of PD reminds me of my own. I was diagnosed one month before my son's wedding. The shock of the diagnosis (even though I had had my suspicions) and my daily emotional upset over it made me limit sharing the bad news with anyone beyond my husband, my mother, and my sister. Certainly, I didn't want to spoil the joy of a wedding in the family. Besides, I felt a medical condition newly diagnosed was an intimate personal matter.
After the honeymoon, I confided in my son and his wife. But it took me five or six months more before I felt I had adjusted to life with PD enough to share information with friends and acquaintances. That was 14 years ago! My case has moved so slowly that I am still living my usual life, although I was widowed over three years ago. Believe me, the feeling of isolation will eventually go away. And if joining a group and sharing ideas and experiences would be beneficial to you, by all means JOIN. Your gp may have been thinking what my gp told me when I first suggested a support group: for some patients, being part of a group that includes very advanced cases of PD can be more frightening than helpful and cause more fear of the future. As you probably know already, a focus on the present rather than the future is a good technique for dealing with Parkinson's. We have to be realistic about having a progressive illness, but living in the moment with as upbeat an attitude as we can muster definitely helps.
I do hope this forum helps, too. It's a support group that allows anonymity and can provide you with a lot of laughter as well. Best of luck,
i agree with J, living in the present, a positive attitude and plenty of exercise makes all the difference. I also felt overwhelmed almost 3 years ago but reassurance from positive people on the forum was very helpful. I am also on Azilect and I think it has really helped me. This year I have started on a low dose of Sinemet. It has made a big difference and on a recent cruise didn't mention to anyone that i had PD. Not that I find that a problem as I was upfront with all my friends and family from the start and that I think helps as people understand.
Having a supportive husband and family really helps. I am living my normal life but pace myself more than I used to. Occasionally I over commit and regret it but i am lucky I have had an excellent response to medication and I'm sure you will be fine when you start your new medication. I was also terrified of taking my first tablets but it is all just routine now.
Chilli, how are you doing? It's been a long time since your initial post, and I've been wondering if your medications are helping and if you still feel isolated in France. I'm going to make another trip to France in the spring, but I have never tried living there. Please post again.
i returned to England a year ago having lived in France for 11 I was diagnosed in France 10 years ago and like you was isolated and terrified of taking my first medication
i read as much as I could about Parkinsons and I was on Requip and Azilect until later I stopped Azilect and am on Sinemet
my First Neurologist only saw me as a brain and not a person, wife, mother ..... So I changed to another who was lovely
i should say I was 54 when diagnosed
now back in England I miss France so much we are coming back in May for a visit to see old friends and neighbours
i think it's often hard when you are in a different country but I have to say that it has not been as easy as Zi thought coming back even though we have 3 grandchildren here but not close by and a son who is also not close by
Chilli, I am still hoping you have not given up on the Forum and will post again.
Meg, may I ask what part of France you lived in for so long? In May I'll be staying near Bergerac in the Dordogne Valley. I have not seen much of that region but think it will be picturesque. I'm also going to visit friends who live in Annecy before a short stay in Paris and then home to the U.S. (Oregon).
Glad you are planning a trip to France, a favourite country with us. Unfortunately I'm now not as keen on that very long flight from Australia anymore. Still we have wonderful memories of our canal trips. Throwing ropes in locks is now not so appealing.
Still going well on sinemet (100/25 x 3 + 1/2 azilect) and hope this continues although I'm not too thrilled when the young pharmacist tells me sinemet it is only good in the short term! Hope the "honeymoon" lasts a long time then!
Libby, I also think the pharmacist may be mistaken. Some people effectively use sinemet many years. I believe views have changed on the question of how long it is useful in counteracting symptoms.
Thanks for the encouraging words about travel in France. And I understand exactly what you mean in regard to long, long flights. I can bear an eight- or nine-hour flight if I must, but the length of the flights to Australia is the reason I have not seen your country. Now I wish I had managed to visit Australia and New Zealand pre-Parkinson's, when I was young. My sister loved both and tells me I have missed the vacation of a lifetime!
That's good news re sinemet J. At least this medication has been around a long time. You are right we live in a great country but it is so far away from most places. Still we are very glad we did so much travel earlier when long flights were maybe tiring but exciting and pd wasn't a consideration.
Hi I was diagnosed with pd in July 2015, it has been very hard to find any medication to agree with me.I had an allergic reaction to senemet,so changed to Madapar ,I have recently started to feel anxious and the drug is not controlling my symptoms. I was prescribed Neupro patches, within a week I had violent headaches,dizzy spells, severe nausea, and blurred vision.I was then put on .25 mg Roprinole,felt unwell after a week I thought my head was going to explode amongst several other symptoms.I am 63 still trying to work , I will not let this beat me, I walk as much as I can and keep busy. Has anyone else had bad reactions to the drugs.
Hello! I have just returned home from some travel and noticed that no one appears to have responded to your post. Unfortunately, I am not one of the really knowledgeable members of the forum when it comes to medications. But there are some! If you post again in Introductions, I think you will receive posts in return, probably with good information on the medications others have used and the side effects associated with them.
