My husband was recently diagnosed at 42. He’s handling it amazingly so far, he’s on medication and exercising every day. We saw our (brilliant) neurologist today who was very happy with how he’s responding to the medication (Co-Careldopa). Thinks he’s running at approx 85% dopamine levels now but wants him at 90% so next appointment he will change his meds to Radagiline. Apparently this may (although not proven) also slow down the progression of PD. Has anyone had good experience with this drug?
I asked about diet…he suggested perhaps Coenzyme Q10…anyone rate taking that?
My next and final question is about DBS. Our Neurologist reckons my husband will be looking at this in about 8 years time which has bothered him as he thought it would be a long way off. If anyone has had good experiences of this procedure please could you let me know…want to give him some reassurance.
Like I said, our Neurologist is brilliant. He doesn’t sugar coat things but he is very reassuring…says it’s up to him to get my husband to 85!
I’m sure you’ll get some good advice shortly from the community, but I just wanted to chime in with some information. I think your husband has already made a good step by speaking to his Parkinson’s nurse about DBS; this might not be an option for everyone with the condition, however, we have a lot of information on this on our website so that people can make an informed decision if they choose to have this treatment. You can find this information here - https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation.
It’s great that your husband is doing well and I hope he continues to do so. There’s a great community of people here on the forum who can offer you a wealth of knowledge and personal experiences with living with the condition that I’m sure you’ll find useful. However, we have a free and confidential helpline which you can call on 0808 800 0303 or email us [email protected].
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I was diagnosed at 60 and went on Rasagiline straight away. I have had no issues with it. It is supposed to reduce alpha-synuclein clumping. After about 4yrs I added sinemet. I have been taking CQ10 most of this time along with various other supplements. Seems work for me but difficult to get a definite reaction in the same way that exercise, dance or tai-chi does.
Thank you, that’s very helpful.
I was diagnosed in August 2017 at age 50. My neuro prescribed Rasagaline straight away and recommended q10 supplements which I have diligently taken, I have no idea if they are making a difference but I will carry on regardless. As far as the Rasagaline is concerned, unfortunately I had a heart attack after taking them for around 5 months. I must stress this is very rare but it is listed on the leaflet in the box as an uncommon side affect along with skin cancer and stroke (how lovely!!!). I think I read that the statistics are 1 in 200 as the heart attack side effect.
Naturally i stopped taking it. Astonishingly the neuro said I should carry on taking it as its uncommon. Make your own conclusion with that one. So sorry its not a positive response to your post but I certainly think its worth sharing
Thank you for commenting…so sorry you had to go through that on top of everything else. Hope the medication you’re on now is working out for the better. I’m learning that it’s very much trial and error for everybody. We are still very new to this and have a lot to learn!
My husband was diagnosed 16 years ago aged 43. He copes amazingly and has always been very positive. He has been on different medications over the years including Ampomorphine but last year had DBS. Over the last 16 years it was only mentioned to him twice by consultants and in the end he asked to be referred after speaking to someone else who had the surgery with good results.
He has not tried Coenzyme Q10 but I will look into this so thanks for the suggestion.
Happy to answer any questions about DBS whenever you have any questions.
This is well worth the time to read: https://www.hindawi.com/journals/omcl/2017/6405278/
Thank you…it’s always good to hear from people who are a few years ahead of us. As you know it’s the unknown that is so scary. In your experience has your husband still managed a good quality of life? Does he still work, drive, hobbies etc? Our youngest is only 6 so I very much worry she will still be young when things crank up a gear. Has the dbs made a huge difference? Hope you don’t mind me asking all this x
Thank you, much appreciated
Absolutely I understand what you said about scary. I wish I had known then (16 years ago) what I know now. My husband has a very good quality of life now. Much better since the DBS although that has taken 10 months since surgery. He worked for 11 years after being diagnosed -and then took early retirement. He drove for 13 years but gave up of his own choosing because of having doubts over whether he was safe 3 years ago. He does have hobbies and has not let it hold him back. There have been a lot of ups and downs but the things that have helped us is support from understanding family and friends. Also Parkinson’s UK - we joined a local group and have been involved in fund raising and different things. We have made some great friends through the group. The Local Advisor has been a great help.The DBS has made a huge difference. I dont mind you asking. x
My wife was diagnosed at the age of 45 with Parkinsons which was 20 years ago and had DBS about 5 years ago which was done by a brilliant surgeon named Mr Rob Morris at Addenbrooks in Cambridge. It gave her a few more years of good quality of life but now her legs are giving up on her now which isn’t directly anything to do with the DBS but saying that everybody who has had it done has different experiences of it. By no means has she ever regretted it and talks about her experience with anyone whos thinking of having it done. There is only one person who can say yes or no to it and thats your husband with a little help from you.
Its a big thing to think about and i wish you the best.
Thank you, I appreciate your comments. Very much hope something can be done to help your wife with the problems she has with her legs.
There are a lot of these types of products and I wouldn’t advice them.
It is far more effective and better to try and change your lifestyle without having to take additional products/pills.
I used www.keto4living.online who really helped change my approach to eating. The benefits were truly unbelievable and something I really did see and feel the change.