New user


#1
I have just been diagnosed wih parkinsons

#2
Hello supergran52
#
now with a username like that,...... are you a gran? Are you 52? (or 52 grandkids and hence the super?)

Take a deep breath and tell us a bit more.

I am 65 a gran of 4 and diagnosed about 2 years ago.

#3
hello supergran52 and welcome,
I am 56 & have no grandchildren and not so sure that I am particularly super.
Tell us as much or as little as you wish, and I can assure you that there will be somebody here to help. I truely do not know what I would have done without this forum

#4
Welcome Supergran52. If you have 52 grandchildren, I take my hat off to you! Having said that, you are probably feeling a bit vulnerable right now. It takes time to come to terms with the diagnosis but, once you do, life just goes on but a bit differently.

Hey Mosie - SNAP - I am a 64 gran of 4 diagnosed exactly 2 years ago. I find that, if I'm feeling down, the grandchildren will soon have me laughing again. Exhausted, but laughing. They're better than any medication.

#5
Hello Lily

It was one of my grandchildren who actually pushed me into going to the doctor about my funny set of symptoms. We were waitingg at the side of the Cromwell Rd to go over to the V&A, I was making her hold hands, and she said-I hate it when you do that.
I didn't know I was doing anything, she said I was pretending to be cold and shivering my hand. I had a visible tremor in my right hand but she was holding my left.Now she takes a doctorly interest in anything she notices.

#6
I supergran.

I remember when I was first diagnosed almost exactly a year ago. It wasn't a pleasant feeling. Uncertainty about the future, how was I going to cope with this. How long would I be able to continue working.

I didn't want my husband and family turning into carers. it was certainly a shock.

A year later, I have come to terms with having Parkinson's. Life is still the same as normal with a few tweaks and I still work full-time, with a few tweaks. My family have been great, my husband has changed from a thoughtless and often selfish man into a loving and caring one ( well, most of the time. Old habits die hard)

it's been a rough year with trying different medications some of which have made me feel rotten.but I'm not giving up, onwards and upwards.just about to start a new medication so fingers crossed this is the one that will make a difference.

So welcome to our community, hope you get all the information you need from people who actually know rather than neurologists and doctors who just think they know.

and remember, not everything you read about Parkinson's will happen to you, we are all different, we all respond in different ways. If there is a good time to have Parkinson's. It is now because of all the medication's and treatments that are available, not to mention the cure which might be just around the corner.

Good luck

Caroline

#7
Hi Supergran. Like Caroline B I was diagnosed a year ago and have had difficulty finding medication to suit me - have been on Requip and Mirapexin neither of which worked So now am taking a small dose of Sinemet with the Mirapexin. Its early days so fingers crossed.

I would tell everyone newly diag. that its not all bad news - you will realise what good family and friends you have round you. Help comes from the most unexpected sources.

Good luck and Happy Mothers Day.

#8
I am approaching 60 and a gran to four gorgeous children

I have had symptoms since Jul 11 but my GP was not interested

My main problem now is very painful legs

I am currently taking Azilect and about to start on Sinemet

#9
Hello again.

Are your meds starting to help you? I have no experience of either of them, so can't swop advice there. I have just increased my dose of Requip and so far the only effect is increased wakefulness!

Good luck and keep posting.

#10
Hi, I am new to the forum. My husband was diagnosed with Parkinsons almost 20 years ago now, to begin with you would hardly notice that there was anything wrong, it has been the last 7 or 8 years he has started to get worse. To be honest it isn't the physical side of the illness that I find hard to help him with, it is the mental side. The past few weeks have been really bad, he had to retire from work due to his health about 8 years ago. He falls asleep most of the day and when he wakes up he has been asking me to take him to the office, he says he needs to go and take the cash to the bank, or the other day he said it isn't fair to leave the office short staffed. I really try hard to keep calm and try to persuade him that he no longer works. The other day he said just give me the keys to the office then I will go myself, in the end I just said if you can find the keys then you go, but I haven't got them. Fortunately after 30 mins of him roaming around the house searching, I think he forgot what he was looking for and went and fell asleep. I have a job trying to get him to drink plenty of fluids, the doctor said I should make a chart out for him and get him to drink a full beaker of water every hour and tick off when he has done it. I would love to be able to do that, but it is a nightmare getting him to drink anything when he takes his pills.

#11
Hi Mosie. Only effect of new Medication is in making me more tired than usual but early days yet.:astonished:. At least a good excuse to sit outside in the sun today.

#12
I will get my new medication tomorrow, sinemet hopefully it will help.

Legs are still very stiff and painful

#13
Hi Supergran,

Welcome,pleased to meet you.:smile:

I'm also approaching sixty (you and I are sharing our Diamond Jubilee with the Queen :grin:) I've got a wonderful husband (we'll be celebrating our Ruby wedding next year), we never had any children.

Hope you find this forum useful, I'm sure you will, everyone is very friendly and helpful.

I wish I knew what to do about painful legs! One of the best solutions I can find apart from painkillers is my trusty hot water bottle. One of the problems with my legs is cramp, I find that eating bananas and drinking milk (good sources of potassium) helps with that.

#14
Hi Supergran

I was dx 2 weeks ago so am as new to this as you.

Back in January I was stiff as a plank with aches and pains. My partner bought me 10 sessions at the local toning tables in the hope that this would help. I started to feel a benefit after the 2nd session and have just extended it for a further 10. At first I did 2 a week but now am doing just 1 a week. My body has really loosened up and I am without aches and pain most of the time now.

It might be worth you talking to the person who runs your local one and explaining to them your problems, it has worked a treat for me.

I am going to start a yoga class tonight, I'm determined to stay flexible.

Best wishes

Topsy

#15
Hi Topsy,

Toning tables. Where do you go for this please? Coincidentally, someone else suggested this to me this morning. Sounds just what I need for my current bout of stiffness - no other change in symptoms.

#16
Hi EileenPatricia,

I live up in Cumbria and my nearest ones are in Penrith. The lady who runs them has been very supportive and helpful. I would definetly recommend them from the improvement they have given me

Try googling Toning Tables for more info. I was told that they were specifically designed by a physio for people with movement issues. The place that I go to has 7 tables, each of them working a different area of the body and you can increase the level of exercise as you improve.

If I can help any more, just ask.

Good luck

Topsy

#17
Thanks Topsy,

I had already googled and at first thought I would not find any as they have disappeared in the locality but I've found a ladies' gymn not too far away which has loads of tables and wonder of wonders it does not seem to cost much. I can't wait to have a go. How long do you recommend per session if you don't mind another question.

When I was first married, late sixties I lived for five years in Cumberland as it was then called - in and around Workington - but I was not a regular walker then.

Best wishes

#18
Hi Hubbard,
What you have described are exactly the symptoms my husband has. He was diagnosed nearly 19 years ago and it is only the past 4 years the mental problems have started. I haven't heard about taking water to help but I will try to do this.I suppose dehydration can cause similar symptoms.He also sees people who are not there etc. An appointment has been made for him to see a psychiatrist soon so we will see what happens then.Its good (in a way) to know someone else has the same problem.When my husband first got Parkinsons I had no idea it could cause mental problems....

#19
Hi Eileenpatricia

My local has 7 tables each of which work a different part of the body and you do 8mins on each table in a session. Start on the gentlest setting and don't increase the settings until the 5th session. If you respond like me you will feel tired and a bit sore after the first couple of sessions but notice improvements from the 2nd session onwards. I am off for my 12th session today.

Hope you get as much improvement as I have.

I lived in the Workington area for 15 years from 1981, what a co-incidence!

Best wishes

Topsy

#20
Hi Jay,

I also find that obviously in the summer months, if it is a hot sunny day it is important to try and get my husband to have more drinks, but as I say it is very difficult as he won't always co-operate. I wish I could have a permanent drip feed into him, that would help the problem, although I know that's not practical. Oh! well, I suppose just have to keep trying. Hope you are managing ok. not always easy for the carer either is it?