Scared and feeling alone


#1
I just need to write about how I am feeling. I am pretty certain that I have parkinson's disease and just feel so ill and depressed. My doctor wouldn't give me anti depressents yesterday as he said that it would interfere with the other drugs that I take. I just feel that no body understands the discomfort that I live with all of the time, the exhaustion of trying to look after a chattering four year old. The rest of my family just expect me to be a saint and my husband is planning everything that is going to be happening this bank holiday Monday involving drinking a lot and barbecuing with his family. My husband just believes that this is all something and nothing and my parents think it is a virus and just say tired again? I just feel like the elephant in the room all of the time. Like a non person.. I feel that I have to be sweetness and light all of the time to pay back for the fact that I need some help and am broken. I am really afraid for the future. I am only 40 witha four year old and feel like my future and dreams are shattered. We were about to adopt before all of this started.

#2

You do not know for sure yet so you can not worry about something that has not happened. Your husband is probably trying to keep things normal. If it is pd, believe me it is not the end of the world. What you have to do for your own sanity is to meet pd head on and show it who is the boss and do not let it get the better of you. Change you way of thinking about pd and take charge of your future and your chattering four year olds future and do not hold back on the adoption, go for it!


#3

minxish --  You are the perfect example of being alone in a crowd, aren't you?  You have your immediate family plus your parents and your in-laws to deal with.  Meanwhile, inside you are worried sick that you have a serious illness.  It is too bad that no one takes your concerns seriously.  I'd recommend trying to see a specialist in neurology or movement disorders.  But I don't know where you are located, so the process may be different from what I am accustomed to in the U.S.

You mention feeling ill, depressed, and tired.  You are "pretty certain" that you have PD.  Do you have other symptoms as well?  I wouldn't necessarily think of PD from just the symptoms you listed; there could be many other possibilities.  But if you have a resting tremor or lack of normal arm swing when walking or other symptoms more specifically associated with PD, then I understand your conclusion.

As Terrific said above, if you do get a diagnosis of PD, do not think of it as the end to your normal life.  I have had this disease 17 years now and am still leading my usual life!  Medications are very effective now; exercise does a great deal for us; and a positive attitude helps even more.  Although I am 68 and may not live long enough to see the cure, you at only 40 are quite likely to.  (That is if you even have Parkinson's.)

I wish you good luck in dealing with all the fuss over the holiday weekend.  I think if I were in your place, I would try to remain detached and calm, focussing on my own well-being rather than socialising.  Maybe soon after that you can see a medical professional who can determine positively whether you have PD.  Just not knowing is probably contributing to your anxiety and tendency toward depression.

Sincere best wishes,

J

 


#4
Thank you. I am concerned because my neurologist is concerned. He mentioned right side weakness when walking and slight reduced arm swing. He is scheduling MRI and lumbar puncture in about 4 weeks time. In the mean time, I am so fatigued and stiff. My symptoms were sudden onset and I thought symmetrical. The neuro said it would be atypical if it was parkinsons. I am concerned as I thought he meant unlikely but since I have realised what atypical parkinsons can mean. Thanks for being there to chat to.

#5

You're welcome!  That's what is so great about this forum:  there is always someone to talk to, someone who knows what you are going through.  And some members are very knowledgeable; I have learned a lot about PD medications from others on here.

Now I understand, from the symptoms you have had, why you believe it's Parkinson's.  It sounds as if the neurologist is on the right track.  When you have results to share with your family, you will probably get their attention and support in whatever you face.

Best regards,     J


#6

Hello minxish

When I read your post it was like reading my own story so I fully understand your fears, the lack of understanding and support for you sounds almost non existant, I am sure that in their own little narrow minded world people think that PD is catching and if they get too close they will  surely die, it really is annoying, the only person close to me now is my dear wife she is so good and I could not live without her but the pressure is causing problems.

After you have your scan you will know more than you do now, but J  an d terrific  are right in saying try to stay calm ,and as for not mixing anti depressant with parky drugs I am taking Mirtizapene which works well for me and I have advanced PD contolled by Duodopa system.

Do not despair there are good people who will  help you I was diagnosed in 99 and I am 64 this year, still in there fighting and live a normal life yes its hard at times but its not the end.

                    Good luck with the scan          Kindest Regards   Fed


#7
Thanks everyone. My family are lovely really but they dont know what to do. I just get sooooo mad at this illness sometimes and in my head I have to channel it somewhere. I can do it on this forum, rather than unfairly venting at them. Thanks for reassuring me that life is not over even if I do have pd. I do tend to be a worrier, but then do manage to keep sane. I am worried about atypical parkinsons more. Google can be both a blessing and a curse. Well done for keeping fighting. If I am diagnosed at least you guys can give me advice. :-)

#8

 

              Hello minxish

                               I hope you were not offended by my remarks by referring to folks being narrow minded by that I mean I  was not implying your family behaved in that way, unfortunately mine does, I know they still love me but they never call in or ring me up just to ask how I  am, I know its just as easy to call them and by behaving the way I am is not helping and I know that, but I am conducting a experiment here, its now 7 weeks since I have seen or heard from my eldest daughter, shes 42  , and almost 4 weeks since I had any visits or calls from my youngest, age 40, and she is training to be a nurse, perhaps she is using up all her compassion at work and there is none left for her dad,there are many other aspects of this sad tale which would make things clearer and easier to portray how things are going but I cant add more for I would then see in print some very unfair and disloyal behaviour by certain people not just my kids? ,I am sorry minxish I  do get a bit upset when the conversation gets round to families and the behaviour of, but when I say that all my family who I  need in my life now, all live within 4mls and one 2mls away  , that is what makes me slightly annoyed.

                                    Kindest  Regards Fed


#9
I am not offended at all. I know how thoughtless and cruel people can be. When you are ill, you sure learn who your friends are. I have prayed that God will make them see and change their hearts. I have learnt a lot through being so sick. I look back now and realise that I could have been more supportive to others, well one other in particular. I said I am here if you need anything but that was about it. I dont want to upset you but your experiment is hurting you further. And they are oblivious. What if you rang them, told them you loved them, really said that you miss them and that you are there for them. Find out what is going on in their lives. Took them for dinner. They don't deserve it and you sure as hell dont see why you should do it but maybe think of it as an experiment. Really you know they love you but they take you for granted and are busy with trying to make ends meet. we all just need to feel loved and excepted at the end of the day. Saying all this, I could blow a casket at my lot sometimes... It is TRUE what a friend of mine said. It sucks. No one can be ill for you. God bless. Feel free to ignore if I haven't a clue. ,;-)

#10

Hi minxish

i understand how scared you must feel right now not knowing  but sounds like your consultant is on the right track and once you find out if it is pd or not although it is a big shock to the system you will eventually learn to adapt and live with it there is life after pd diagnosis and though it wont feel like that right now try to have a posative attiude my motto is i have parkinsons it dosent have me, i am still me only slower, i joined my local support group best thing i ever did have made some lovely friends it is an upside of having pd if there is one, i suppose what i am trying to say is dont give up it wont be easy but you will get there keep your chin up.


#11
Thanks Lilly. It is scary. But there are worse things to have and praying it is not one of those. You sound like you have a great attitude. I shall certainly reach out for all the support I can get if I have pd. Thanks again for the encouragement.