You might be visiting our website because you have just been diagnosed with Parkinson’s Disease. If this is the case we have some information and a few links here for you – videos and articles which are easy listening and reading - these might assist you in coming to terms with the fact that you or a loved one has Parkinson’s Disease.
A word from the Support Group first. We are not giving advice in this section. What we have done is gather together some information to make your search for what might be helpful to you right now a bit easier.
At this early stage, shock and horror are two words which might come to mind but, hopefully, armed with a bit of time and a bit more knowledge, you will move to an acceptance and once again find yourself planning for the future – a future that might be different from what you intended but will still be one to look forward to.
Some People with Parkinson’s (PwP) are not interested in joining a Support Group; others put it off until they come to terms with having the disease and are looking for more information and ideas; and, for some, they find a Support Group very helpful almost immediately. Everyone is different on their Parkinson’s journey. We are here at whatever point you might think we can be of support to you.
Sometimes, it is the future carer who really wants to talk with others in their need to find a way to handle their new situation. Partners are welcome to the group with or without the Person with Parkinson’s. If you are a couple, there are two of you on this Parkinson’s journey.
Some reflective thoughts from our members with regard to their diagnoses of Parkinson’s Disease include:
· Once I had a diagnosis for what was wrong with me I experienced a great sense of relief. It was not a death sentence and I found myself smiling again.
· Inform your family and friends – they will be your strength in the future. Share how you feel – a worry shared is a worry halved. You will be surprised how uplifting your family and friends can be.
· It hit me like a truck. I was in shock for ages. I clung to something I read which said, ‘You die with Parkinson’s not of having Parkinson’s’. It took quite a while for me to accept that I would eventually have a lifestyle that was not as easy as I thought it would be. I kept working for a few years. Right now, after 5 years, I still feel OK – I go to the gym, I dance, travel and look after grandchildren.
· I have one thing to say – keep your sense of humour – from diagnosis onwards.
· I thought this disease was for old people. I was only 54 years old. I was still working. How did I feel when first diagnosed? I was shocked but I thought – well it is better than having the big C or MS. I am a very pragmatic person so I told everyone and I let them know how the disease might affect me from what I knew then. My workplace supported me immediately. I think I might only work until I am 60, but I will just judge that as I go along.
· I thought to myself – how can I watch my husband struggle with this disease? Will I really have to turn into a carer? This is not what I want from life! I was scared, angry, upset, cranky and stressed out of my mind. Now, 2 years later, I know I will cope. I did lots of reading; I talked to others who have PD in their lives; and now I find myself regularly adjusting as the disease challenges us. I have accepted life for what it is – always uncertain. Things could be worse – I can always find someone who is worse off than I am and is still carrying on!
· I immediately thought that I had better do some of the things I have always wanted to do right now, in case I couldn’t later. My husband and I threw ourselves into early travel. We were lucky that we could arrange our lives to do that with taking some long service leave and other options. We were so busy planning our new life that I think we eased ourselves into acceptance very quickly.
· I am still struggling years on but now I share it with people and it makes the road easier.
· I found going to a psychologist and talking helped me to accept my wife’s Parkinson’s diagnosis. Men don’t always talk out their worries but I wanted to be there for my wife in the most supportive way possible and I wasn’t sure how to do it.
· Sometimes I think some people might change their lives too quickly after receiving a diagnosis of PD. I think you need to get started straightaway on the best routine of Parkinson’s exercises you can (you probably should do some exercise anyway as you get older) plus find a good GP and specialist, both of whom you can work with well – you will need both. Then pace yourself as the disease progresses – is it time to get some travelling done; is it time to retire and enjoy life if you are still working; is it time to think about downsizing; is it time to not climb ladders anymore; is it time to stop driving? All these things would have come up anyway had your life not taken this sudden turn. Just keep on keeping on – life is what you put into it.
· The way I coped with my husband’s diagnosis was to throw myself into raising awareness of the disease and by working with the local Support Group to get some activities up and running in Toowoomba for People with Parkinson’s. The more I did the less I thought about our personal situation and now the disease is simply part of our way of life.
. We were surprised but life continued and symptoms were not really a problem while on the medication. We travelled and certainly did not want to go to a Support Group - we talked about it but were concerned that it would be far too confronting - seeing what life might be like in the future for us. Exercise was added to the medications by attending the excellent Parkinson's Therapy Group at BlueCare and through that exercise group we met others with Parkinson's and gently eased our way into attending the Support Group. We are very pleased we did - we have learnt so much that has helped us in this journey. We just had to get to that point of acceptance of the disease.
Now here are some links to helpful articles and videos.
Parkinson’s Queensland has ‘Newly Diagnosed’ packages which they will send out to you if you have not received one from your doctor. They also have a Telephone Peer Support Program. Here is the link to their website.