It doesn’t rain, it pours - an Intro

Hi everyone,

I am new to this and having one hell of a week. I have been checking all the info on the site and forum.

I am not yet diagnosed but my movement specialist suspects that I may have early onset at age 43. I was told this on Friday and I am having a DaTScan set up. Now my wife of 12 years has dropped the bombshell that she wants us to separate saying I have been ‘distant’ and not giving enough affection. I am scared of going through all this on my own. Now I am stuck inside with her due to the virus lockdown with nowhere to go. I guess I just want to find some friends on here because I am struggling big time.

Thanks

Hi Russ,
Welcome to the forum.
I am so sorry to hear your news both your health and your relationship.
Look up your local support team, although they will not be meeting in this current climate I am sure they will still be there to support you.
People on here are very friendly and helpfu.
Stay safe
Annie

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Hello sorry not to have responded more quickly but nothing is very normal just now including my routines. I can’t begin to imagine how difficult things must be for you at the moment, you have had something of a double whammy. I am not in a position to comment on the sad breakdown of your marriage, which is certainly made more difficult by all the restrictions but hopefully I can say something that will help on the health side. First thing is if, and I say if as your specialist suspects you have it and you may not, if you do it may feel like the end of the world but it really isn’t unless you let it. A quick trawl through the replies to others newly diagnosed will tell you that advice is generally the same. Don’t panic or do make any big decisions now. You have time, in most people PD is slow moving so get used to the diagnosis and take it one day at a time. I am a great believer in information because with the right information you are in a strong position to make good decisions but in the early days I advise caution. Feeling a need to read everything in sight can be counterproductive giving you information overload if not frightening you half to death. Concentrate on what you need to know now and strongly recommend you write down any questions you may want to ask when you next see your specialist chances are you will forget something. The Parkinson’s UK site has a lot of info incl those just diagnosed and the helpline is excellent so don’t be afraid to use it. It is perfectly possible to live on your own with Parkinson’s indeed I do along with many more. It is not always easy but can be done. For you of course there will be all sorts of other ‘variables’ for want of a better word depending on what you and your wife decide so I think it doubly important you take time before making big decisions - made with a clear head and not a knee jerk reaction. You can have a good life and ,live with PD it may be different but still worth it unless you choose otherwise.
Look after yourself and let us know how you are getting on

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Thanks Annie, I certainly plan to look at local meet ups when the world gets back to some form of normal. I am just trying to get through one day at a time at the moment and my daughter gives me the strength I need to carry on.
Russell

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I had my DAT scan last Thursday and the consultant phoned me weds this week.(25/3) Because of the Corona Virus nothing face to face. I have so many questions. I had suspected but was told my symptoms were A typical initially. Going to have to wait and see what the letter says. I’m 52 and also concerned for my partner, we look after 3 oldies too. Being stuck in doors is bad news as I was fairly active…

Thanks Tot! I am one of those that find it difficult to stop following the rabbit holes of google searches so I have done a lot of research. With regards to making big decisions there are many that I will unfortunately need to make outside of my health situation as there is no chance of the marriage being recovered. My symptoms have been a big part of what has caused this situation. I am not panicking but my emotions are certainly all over the place. I am sure I will have more questions in time and I will post them as they arise. Thanks for the support and your positive response.
Russell

You are welcome. I would not normally go into such detail because all I do is my best to stay positive and get on with old Parky forever present but I think it may help. You do of course have a lot of difficulties to overcome but not for the first time I have found it quite amazing just how much you can cope with without it entirely wrecking your life. In May last year i was admitted to hospital with an infection which should have been for a couple of days but for all sorts of reasons turned into a fortnight followed by three weeks rehab, it took a few months to get my energy back then October saw me back in hospital for emergency surgery and another 2 weeks before going home to another slow recovery. By Christmas I was feeling well with high Hope’s for a less dramatic new year. One week into the new year my neighbour’s washing machine flooded my flat so I had to move out first to a hotel and since February have been living in a rented flat, nice enough but not set up for me as my flat is and expecting not to be able to go home for six months. Now the virus has changed everything including that I have no idea when I will be able to go home, my home and of course parky has taken the opportunity to be a bit unhelpful at times. Quite a lot to deal with I think you will agree. I don’t say all this for you or anyone else to think I am something I am not. I am just me. I have my moments. I have opted to live the best I can with Parkinson’s, an active choice in which my mind set is based on glass half full, that life is different not ended. I am into my 11th year since diagnosis living on my own with minimal help and in my own way content and at peace with myself and life even if not on a complete even keel right now. I have found my way to live with what has happened so will you we all do. The reason I give a bit of detail here is to say that though you are facing a difficult time, make a conscious choice to live your life a day at a time, you only get each day once, accept you will have good and bad times but believe in yourself in being able to at some point have a life of worth, if not now it is not easy, my way is not your way. You need to decide that but the decision about how you choose to view what life throws at you can I believe, make the difference between sinking surviving and living. I chose living a long time ago. I hope you find your own path to personal strength - it is there if you so decide

Russ
You are not alone.
I had a shit year last year, just knowing we are not alone helps enormously
Post here anytime

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Hope this year is turning out better than last

Tot, Thank you again for your support and info. You have certainly had a lot to deal with and I really admire your positivity. I only hope that I can get through all this with the same strength. I have barely slept for days now, a combination of anxiety, grief for my relationship and my symptoms is really taking its toll.

Russell

Hi Siwan,
Sorry to hear you have had a tough time as well and you are right it is good to know there are people out there that can support.

Russell

Russell, welcome to the forum and I am very sorry to hear your current difficulties.

I am also divorced but my diagnosis came 3 years after the split. I can’t imagine what it must be like for you to be coping with 2 bombshells during a pandemic…

I’m glad you have your daughter to focus on, I have 2 kids too. I was diagnosed at 49 about 6 months ago. So I am new to PD too. I have learned:

  • Everyone has a different PD journey
  • Exercise is incredibly important, remember you can still leave the house to exercise, I do every day
  • PD is a marathon, not a sprint
  • There are people on this forum who have had PD for 30 years and still live normal lives, so do not lose hope

Take care of yourself - and your daughter!

Cheers

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Thanks Pcyc.

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