I’m just reaching out to all you experienced Parkies. Is there anything you’d wished you’d done/said or known about that you’d be happy to pass on to us fairly new to this club.
Any snippets would be welcome!
Hello Minty & welcome.
My thoughts on regrets / changes / hindsight / are controversial.
I was diagnosed with Atypical Parkinson’s following a positive datscan in June 2023.
My symptoms were initially VERY mild. I tried Madopar & another drug that didn’t work & then a few months later I started on Sinemet. Now Sinemet 100% helped my symptoms in that instead of having occasional bad gait freezing problems I had more mild issues & found my life was fairly normal & I could do the things I wanted. But now I am having some fairly severe sleep problems & my gait freezing is worsening & I have started having falls.
So the doubts I have are whether I should have delayed taking the medication or not taken it at all.
Everyone is different & react differently to medication & I might have been worse had I not started on Sinemet. But I will never know.
Also as your body gets used to the medication the more medication you need.
Impossible decision really & should be taken in consultation with your medical team & which Parkinson’s you have.
Any questions do ask.
Best wishes
Steve2
1 Like
Hi Steve. I do not think that it is a case of getting used to a dose of medication that causes you to need a larger dose. Best evidence is that it is the progression of the disease through increased neuronal death that leads to the need for larger doses of l-dopa. That has certainly been the case in my family (my father, his sister and me)
Regards
Doug
Hi Minty
Welcome to the forum. I’m wife to husband with Parkinsons 13 years diagnosed. From my perspective finding out as much as possible about the disease and the medications prescribed has been key.
An important ‘throw away comment’ from our GP which was remember you have a choice with the nhs where you are treated for your Parkinsons has been important. After being given the run around by a not pleasant unhelpful local neurologist we did some research and asked our GP to refer to Kings College Hospital in London which held the registration as a hospital of excellence for the treatment of Parkinsons (don’t know if it still hold this). My husbands treatment there has been faultless, yes we have to wait at appointments but am happy to do so for their thoroughness.
Kings is a training and research hospital so we have joined and taken part (both of us) in numerous research projects which has always been rewarding.
Other tip, which maynot be relevant. Claim any/all benefits you are entitled to, sooner rather than later.
Parkinsons UK has a helpline and will help you with this.
I say this because we were green about benefits until we needed one and found my husband was too old to claim it. I’m talking what is PIP now, used to be disability living allowance I think. This is the only benefit that gives you access to the mobility scheme. You cannot make a new claim for it post state pension age. However if you are successful in claiming it pre pension age and are able to access a mobility vehicle it is rarely taken away when you do reach state pension age.
My husband is a full time wheelchair user caused by failed orthopeadic operations and we found it a shock to have to find money for ourselves to purchase a wheelchair accessible vehicle as pensioners.
Other than that tips would be don’t hesitate now in doing the things you want, any bucket list trips etc do them.
Best Wishes Jane
2 Likes
Hello Minty and welcome to the forum.
The advice/information you are seeking sounds reasonable enough but it is surprisingly difficult to answer. You will often hear Parkinson’s described as being an individual condition; that’s because we may have similar symptoms but the way they impact on anyone’s life and the way they manage them can be a very different experience for each individual. I see steve2 has already replied wondering if he should have delayed starting his meds etc and that and Douglas has replied with a different slant - and that’s commonly often the case that leaves you no better off and if newly diagnosed could leave you confused, scared even, a whole range of mixed emotions can come into play. There are some common themes, questions and concerns that crop up time and again, one of them being meds, another is the future or do you tell people or not, work concerns etc. Then there is the issue of information amongst many other subjects. You can search any of these sorts of things on the forum and be able to see the sorts of replies questions like these have brought up; perhaps within these you will see something that may give the things you asked for in your post.
So what can I say in answer to your post that may help. I’m sure you will get some replies that are more specific than anything I might write and arguably more helpful but to me the most important thing to know is that things do settle down, you do find way to live with it, you come to understand that in most people progression of Parkinson’s will be slow and there will be time to adapt and adjust, you can still have your hopes and dreams and your life is certainly not over unless you choose to see it in those terms. You might not believe that right now but it will happen, everyone has to find their own way through the sinking sands that many feel on diagnosis; what I can’t tell you is how long or what form that will take as you are searching for your own unique path through the early days after diagnosis and you may just have to take that on trust for now but it will happen - all of us on the forum have been through that process in one way or another and come out the other side to get on with our lives.
There is one thing that I would like to make comment on, although it is only my opinion and that is to be careful how you use information. There is a lot of information and advice for those who are newly diagnosed, not to mention easily consulted Dr Google but it can end up being a double edged sword. Some feel a need to read everything in sight, leading to information overload and ending up feeling everything is hopeless because what they remember are the worst case scenarios of people in very advanced stages of the condition. The fact that those people may have had many many years when Parkinson’s didn’t interfere with their lives very much, is lost as they contemplate the big black hole they are facing and the only way is down Don’t get me wrong, information is important but for me it is better to get the information you need to address a particular issue, symptom or whatever when it is the right time for you and not just because you are newly diagnosed and should immediately have a whole box load of information presented to you as soon as you are diagnosed.
I am not sure how much of this will make sense to you but I hope you can at least take something from it that may help.
My best wishes to you.
Tot
1 Like
Trust yourself.
Be your own advocate.