New experience


#1
My name is Tony,
I was diagnosed with PD two weeks ago,
I am taking Azilect 1mg which seems to have done wonders within a very short space of time.
I just have problems with my left foot being numb sometimes or feeling its asleep?
The other problem is serious depression. I live on my own and the depression is making me so upset!
Is this normal.
I said to myself i would not write in a Forum but I just need to talk.
I went to a PD meeting this afternoon with a friend but the people there depressed me so much I did not stay.
I would love to hear from other sufferers.

#2
Hello Tony57,

I have not got PD but my husband has had it for almost 30years and was diagnosed at the age of 39,please get in touch with the PD nurse and see if there is a group or just a few other people that you could meet and talk with. We started out like this by our then Parkinsons Area Officer who intruduced us to three other couples who we met for tea and a chat, it is an easier way to getting to know people without going straight to a branch which some peole like you find too much to start with.
We went on to belong to a younger group of Pwp and then formed a branch and were involved with this for sixteen years before retiring.
There is life after PD and you will adjust your life gradually but try to keep up the interests you have already and please get in touch locally as you will make many friends who understand and who are a great bunch with lots of humour thrown in.
You will also find many friends on this forum who will help.
best wishes
vivian

#3
hello Tony57 and welcome,
I was dx some 3 years ago aged 53 (I think!) I have not yet attended a local pd group meeting a) because the nearest one is miles away, b) It was suggested to me by a visiting OT that I might find it distressing and c) I know myself to be not a group kind of person.
But I do so agree with you and Vivian , there is the need to talk about it, and you have come to the right place. Post away!
I also have a troublesome left foot. To be honest, I have gotten used to it (almost) Depression for some PwP is part and parcel of the whole thing. Appropriate diet, exercise and +ve mental attitude are highly recommended, but if you feel that it is serious, may I suggest that you contact your GP? They do not hand out happy pills just for the asking, but it is an avenue that is there for you to explore.

I wish you all the best

#4
Hi Tony

I have never had any desire to attend a PD meeting but I do frequent this site because it’s anonymous and I feel a connection with the contributors.

I would like to endorse the comments made by Vivian and annebernadette. The first few weeks after diagnosis are the worst but, once you accept that your life will continue, but on a different trajectory, things will get easier. I’m glad the Azilect is working for you but I would keep an eye on the depression and, if it doesn’t lift within a few weeks, I would perhaps be making an appointment with my GP.

In the meantime, check out the rest of the forum to get to know us a bit better. You might even get a few laughs out of it, which can't be bad!

Kindest regards

Lily x

#5
Hi Tony.
Sorry to hear that you have joined our gallaant band. I agree with all that has already been said. Main thing is to keep doing your normal activities as long as you can. It will be difficult keeping care free living by yourself. If you feel the dumps coming on, then join in on the forum. I have not been in the forum long but from what I have seen there is a great bunch of people out there who are only too happy to help and advise.
Keep smiling matey
Chunky

#6
Hello and welcome Tony. Depression is quite a common problem with PD. I think it's important to go out and socialise as much as possible. However, I don't think Parkinsons meetings are the answer. You tend to meet people who are worse than you and that will make you more depressed than ever. Rather you should take up new interests and meet others who share those interests. Widen your circle of friends. Above all fill your life with doing something (physical or mental) and don't give yourself chance to brood and mope.

Make sure it's always:grin:and never:disappointed:

Good luck! Chris

#7
I don't visit the forum much anymore and when I did so this evening I don't wonder why that is the case.

A forum, provided by PUK, and members who advise a newbie to not attend their local PUK group meetings!!

None of us want to see,first hand, what the future holds BUT, it's there, it can't be avoided, and we need to face reality, not cocoon oursleves on a forum where we do not have to come face to face with it.

So, you don't attend these meetings to support the aims and research carried out by PUK but you expect PUK to be there for you with advice, nurses, help line, and all the rest that they provide for a small annual membership fee.

#8
Excuse me benji, but I do not believe that I have advised anyone to not attend a local pd meeting. It is my choice to pay an annual subscrition of an ammount of my choosing to whichever charity I choose. And it is my choice whether or not I attend any sort of group meeting.

I wish you all the best

#9
Sorry about spelling - has been rather a difficult day

#10
.
I agree with Annebernadette, Benji.

You tell us that you don't visit this forum much any more because many other contributors to this excellent facility disagree with your stance that they shouldn't advise newcomers that it is their choice alone whether or not they feel attendance at local PUK meetings would be beneficial to them. You continue by asserting that "none of us wants to see first hand what the future holds, but it's there, can't be avoided, and we all need to face reality, not cocoon ourselves on a forum where we don't have to come face to face with it". But this is surely the whole point of such a forum: total safety and anonymity in order to allow members to open their hearts, with no obligation to meet or socialise with anyone, or come face-to-face with anybody. Who are we to tell these good folk what to do, or make their decisions for them?

Remember that many members cannot get to meetings for work, family or diary reasons; others, like me, would find it almost physically impossible, especially if long distances are involved, and the assistance of carers is required.

You go on to suggest that as financial contributors we should feel obliged to attend meetings if we believe that at some time in the future we may wish to avail ourselves of the excellent services PUK provides. However, there is no requirement for anyone to either be a fee-paying, card-carrying PUK member or contribute so much as a single penny in order to register as a full forum user. The two aspects are unrelated.

Please remember that although you may be the life and soul of the party, many others (I'd hazard a guess at the majority of the forum membership) are probably somewhat less gregarious, and would find such an event, with a roomful of daunting strangers, sufficiently nerve-racking and intimidating as to not go at all. The result would then be totally counter-productive. Particularly (as previously noted) when the other attendees are - by the very nature of this wonderful condition we all share, and its medications - likely to be as grumpy, frail and argumentative as ourselves. The next best thing to a roomful of Meldrews, I'd say!

I think this issue should remain private to every individual.

Take care,

Ray.
.

#11
I have attended a few groups and met some wonderful people.

I don't want to walk up Killiemount-wotsits-name thank you kindly.

So as long as your comfortable saying 'no thank you' umpteen times without appearing offensive, a group is a good place to be in.

#12
Hello Tony57,

Like yourself I was dx just 2 weeks ago. I started on madopar the day after and am already noticing positive changes.

Back in November last year my life just fell apart and I thought that I was on my way out. I have always been a fit active person and suddenly I was exhausted getting out of bed and could only walk 400yds with great difficulty. I spent the next six weeks sleeping or sitting in a chair, I did not think it was possible to feel as ill as I felt. By the end of December I had enough of this and determined to take back control of my body.

I forced myself to get out of the house and walk and set definite achievable targets. A friend that accompanied me on my first half mile walk later told me that he thought he was going to have to carry me home, I was that bad. Each time I achieved a target I set a new one a bit further. The first time that I managed 2 miles I honestly thought I had reached my limit, however with determination by the time I was dx with PD I was regularly managing 7 miles and climbed a 2,800' mountain for the first time in 6 months. Yesterday I walked 10 miles for the first time in 2 years. Non of this has been easy and many times I have almost given in but it is getting easier and I will keep improving and setting a new target.:grin:

Last Sunday I went to my local support group. I was very apprehensive and had a very pleasant surprise talking to several inspirational people who had lived with PD for up to 15 years and were still very active.

I believe that I control my own future,we are only victims if we allow ourselves to be. Set achievable targets and make progress. Remember, a journey of a thousand miles starts with a single step, be bold enough to make that step.

Above all remember that there are many people out there with PD carrying on life as normal, determine that you will be one of them.

Best Wishes

#13
Topsy,

Thanks so much great to hear from you and everybody else that has sent a message to me.
I am a bit more advanced then you 3 weeks on wednesday.
I remember I had serious bouts of tiredness for many years having tried countless Vitamin substitutes without success
I gave up and put my constant tiredness down to being over 50!
I have also had Crohns for 35 years so I thought that also could have been a cause.
I think the PD diagnosis may have been a surprise but in some ways it was a relief as I knew I had something wrong with me for ages?
We are both in the early stages of PD and my findings have been that starting the drugs has brought the symptoms to the surface.
My biggest problem seems to be my left foot when its stationary?
Walking seems okay at present but as they say only time will tell,
Good Luck and please keep me informed with your progress.
Thanks again to everybody!

Tony.

#14
Hi Tony

My feet are ok but my right leg feels that it belongs to someone else. My left one did feel like that but I have taken back ownership! What I find hard to understand is why I can walk for miles, granted with several rests if it is uphill, but standing still for more than a couple of minutes is very tiring and my legs feel as if they want to give way under me.

I have noticed some real improvements since starting medication, easier and quicker in and out of the car, the aches and pains in my back that I have had for ages are now gone for most of the time and I seem to have a bit more energy. I was put on Madopar 62.5gm twice daily for the 1st week, three times daily the 2nd week and then to double the dose three times daily thereafter. I am in my 2nd week now and am reluctant to increase to the double dose as things do seem to be improving and I feel that I should give that a chance and then see if it is necessary to go to the double dose.

Hopefully things will continue to improve. I am starting a yoga class this week, I used to do it regularly back in my 30s and found it very beneficial, I only stopped doing it because the classes were changed to afternoons and clashed with work.

Will let you know how things are progressing.

Good luck and keep in touch.

Topsy

#15
Another instance of why I don't visit this forum very much................

Only one person responded to a post by a newbie, Hubbard, who was obviously in need of support regarding their situation. Instead, a conversation continued between members, completely ignoring the content of a post by a newbie.

How very welcoming.

#16
hi Benji
I have looked at the two posts by Hubbard and can't see anything to complain about. Mrs H is in a very very difficult position but very few of us, especially pwp can help as she was asking for specific advice from someone in the same situation. In such a situation I think it would be inappropriate to respond if one didn't have practical advice from experience.
Multiple conversations in one thread are normal. I only mention all this as an impartial observer in defence of those who carried on with their conversations.

#17
Dear Benji,
I agree 100% with turnip. If we have no personal experience.or knowledge of a specific difficulty and advice requested by a forum member, be they a newbie or an oldie, surely it would be inappropriate, if not irresponsible to offer advice? I asumme that this is why you , wisely, did not respond to the poster?

#18
turnip & annebernadette

You have both missed the point of my post and interpreted it incorrectly or as you see fit.

Hubbard did not ask for specific advice,their post was a statement of their present and personal situation, neither am I 'complaining' about their post,just the lack of responses to it. On the contrary, any one of us could have supported, without giving our expertise, or not, on the subject.

In fact, if this forum did not disclose a member's e mail address when they respond to a poster then I could have happily responded by PM to Hubbard, due to the same circumstances. So,do we welcomne new members and support them with a few words OR do we ignore them and carry on with our long standing friends on the forum, regardless?

Don't bother replying, I shall read only in future.

#19
Hi benji

Annbernadette in my opinion has always been a member who more than most forum members, reply's to the newbies with excellent advice and support..


I have made friends and received excellent support and advice from fellow members.

It does sadden me that some members have stopped posting for whatever their reasons. Yes we may come from different walks in life, and different personalities but all here because the one thing which we do have in common and that's Parkinson's.

When I first joined the forum I only received one welcome and that was from Lorna. That welcome was enough for me and the one I will remember.

all the best PB xx

#20
Hi Benji,
Thanks for showing concern about how new members are welcomed and bringing attention to the fact that someone may not have been welcomed properly. This is important.

As I mentioned in our email exchange last week (and I’ll repeat it here for the benefit of all) we do know about the problems with the personal messaging and we’re definitely working to fix this on the next forum. In the meantime, there are alternatives such as setting up an email address solely for private messaging with other community members. It’s not perfect, but it does allow you to have private chats without worrying about sharing too many details.

I’m sure if you’re in a similar situation to Hubbard and could offer some help, she would appreciate receiving a response posted on the forum, even if you don’t feel comfortable sending a personal message. Remember that sharing information by posts on the forum is not only helpful to the person you’re responding to but also to others who pop in to read the information here.

You’re so right that how new members are welcomed is extremely important to whether people stay and how well they settle into the community. We’ve certainly noticed that there are members who make it a priority to welcome newbies and this is really positive.

Is there more that we could be doing to encourage this happening?

Do community members feel like they were welcomed properly when they first posted in meet and greet?

It would be good to hear everyone’s thoughts on this.

Ezinda