Hopefull new to forum


#1
Morning everybody. New to using computer as well as being diagnosed with,parkinsons so forgive any mistakes please.Since being diagnosed have not been off the laptop husband getting quite cross sometimes feels he's neglected i think also have i got some sort of compulsive behavior because of medication, dont think so i find it takes my mind off things and keeps my hands more flexible.The stiffness and ridigiity is the worse problem for me at the moment. Having said that i first decided to join forum at 3am in the morning approx 2wks ago i never seem to be able to sleep.My father in law was diagnosed with parkinsons 2yrs ago he passed away 14Oct he suffered quite bad from various syptoms.It really scared me and where i had coped very well being diagnosed this hit home to me that i could end my life like that.Since that time i have been told he had progressive supernuclear palsy.for those who dont know this is a terminal illness unlike Parkinsons which is progressive.What worries me is the symptoms are the same so how do you really know what you have. Any answers welcome. Sorry to be so grim am not ushally but i hope by joining the forum i can talk to people who really understand and not burden family with questions that they can not answer Thanks for taking the trouble to read my story hope to write again

#2
Hello hopefull and a big welcome to the forum.
This is a the right place to find good advice and other pwp who are happy to help.
I would be at a loss without my lap top as it is a great way to communicate with others. So don't feel guilty about it. I look forward to seeing around the forum.

All the best PB x

#3
From what I understand PSP is much rarer than PD and is marked by lack of balance, problems with eyes and mild, but progressive dementia. I don't think L-Dopa has much effect, if any on PSP symptoms. Chances of having PSP are very low. I wouldn't lose any sleep over it. Enjoy this forum. I was dx in February and the forum has helped me.

#4
Hello and a very warm welcome to the forum Hopeful, I have been dx for 11 years now and can honestly say that PD isn't the end of the world. Yeas, it can be debilitating and yes at some point you may need to change your lifestyle, but we can and do live our lives with it. My advice would be...keep on with the meds, they do sometimes take ages to get adjusted to and take each day as it comes.

I wish you well and hope to chat along the way.

Glenchass

#5
Just read all your reply's what a lovely surprise and a warm welcome thought how terrible it would be if nobody bothered thank you very much for your positivity and advice

#6
The forum is great place to be hopeful, don't be a stranger. If you ever want to chat there is always someone in the "PARKINSON'S DINER"

#7
welcome to a group of genuinely kind people. All of us suffer from varying degrees of PD, if not we have someone who does. This makes us uniquely able to empathise with most of what you will go through. Never feel for what you say is too burdensome, believe me most of us can trump it.
Just keep talking, and this is what keeps you sane. Please do not hesitate to ask the seemingly stupidest of questions, we have all done it.

#8
HI Hopefull
Like yourself Im newish to pd and computing There are lots of great people on this site
I have always been a bad sleeper , but there is usually somebody about 24/7
Like Glenchass says take each day as it comes
Your not been grim you have had shock its a big thing to get your head round
Im sure like me a year after dx it will not seem as bad
All the best Adrian

#9
Once again thank you all for your much needed positive advice.Feeling much better knowing there are who really understand. Hoping to see my 5month old 1st grandchild today little boy whose little face is enough to cheere anybody up.Thanks again to you all.

#10
hi hopeful, welcome to the forum you will find lots of support and advise, i was diagnosed 8yrs ago and am still working so you see its not all doom and gloom i am not saying that you wont have some bad days but you will also have some good ones as well, the secret is to have a posative attitude and dont let it beat you although having said that sometimes its hard not to have a little blip now and again i dont know what i would do without my hubbys support and my kids well i call them kids the youngest is 21 but they make allowances for me when i need it, but then thats what family are for but never feel you can,t ask any question of us on the forum we are hear for each other.sue.

#11
Thanks Lilly Had bad weekend this ridgity and stiffness gets me down sometimes. Needed to rest today needless to say i cannot sleep now 2.30am.Spoke to nurse this morning she feels need my meds higher dose,dont really want to do that taking 8mg requip at moment.Does anybody else have sleep problems,Apparently physio will help i must chase that up.Must try to get some sleep now hopefully.Goodnight All.

#12
hi hopeful, sorry to hear your not sleeping i seem to get a few good nights and then the dyskinisias start again through night i can be up about 3-4 hrs before they settle down, but today gone from one extreme to the other have hardly had any on time am as stiff as a board sometimes it gets to much but enough moaning, do you take any meds last thing at night maybe that would help i take sinimet cr i found it does help with my sleep its staying asleep thats the problem, worth asking your pd nurse, sue.

#13
hello hopefull,
I am a carer and would love my father to have such oomph and a " joi de vive"
as per I am also new to the forum.
Welcome

#14
Hallo hopeful, I am also new to the forum. My husband has Parkinsons, he was diagnosed 12 years ago at 67 years old. He has been very stoic and tries to keeo going, with the help of the dog and various interests. We are now finding it difficult, as he is becoming far less mobile. I would like to hear how people cope with the sudden surges into a tripping run when walking, This morning my husband was crossing the road when he suddenly ran full tilt and fell over. Luckily no harm done. I have been reading the posts and am impressed by the warmth and support in them. Macavity

#15
Welcome to the forum Macavity and HopefulThere are many many good friends here that will come to your aid. Read through the posts and you may well find some answers. Keep posting yourselves and I hope to meet you both here again.

Love Radz x

#16
Once again thanks fo all your kind words and welcome to newcomers.Lilly yes i do take memds of night but not sinimet i take requip 8mg which they tell me is not very much thank goodness.But must say since increased from 6mg i feel worse,the tremor is pretty much all the time in my leg i dont sleep hardly at all not without frequent waking anyway so going to take your advice and speak to pn.Just off to pilates class now looking forward it does hep with my back disc problems also have to take medication for so really must exercise for both seem to have pain everywhere lately probely seems worse because lack of sleep.Also partner will not accept i have pd he insists it is nerve damage caused from back.Sometimes i think and hope he could be right but i was fortunate enough to have the nucleaur medicine which gives a close as possible diagnosis.It's hard work sometimes trying to get him to understand because i worry if and when i get worse he will not be able to cope.Think i have rambled on enough sorry folks of to class