Feeling fortunate/unfortunate!


#1

 

I have posted on this forum quite a lot recently and find great comfort and also sadness, in reading other people's experiences and thoughts.

I should just like to share how fortunate ( or unfortunate), I am to have two close friends with PD. In fact one used to be my next door neighbour! We have different symptoms and are on different medications, but we can relate to each other's circumstances.

We meet regularly and exchange notes and feelings, which helps a lot. We have interesting days out and enjoy lunching together. We are in our 60's, but very young at heart and quite spirited!

Two of us entered the Mervyn Peak Award competition in 2014 and were lucky enough to get our entries into the finals. We travelled down to London from Yorkshire, to attend the luncheon and award ceremony. It was fascinating to witness the positive and creative abilities of people with PD.

I honestly think that without these two friends, I would not be able to stay so positive myself and determined to enjoy life. So I would urge anyone recently diagnosed with PD, who feels totally 'lost!, to find out if anyone else nearby, has the disease and meet up with them. There is usually a local PD group you can attend, or your doctor might suggest a way of meeting someone. It really does help to have friends in a similar position!


#2

Hi Twinks,

I totally agree with what you say. There's nothing like having a good friend to share the 'highs & lows' of everyday life.  The fact that you are able to share your feelings & experiences with Parkinson's must be a great support.  I moved from one end of the country to the other about ten yrs ago & have really missed just being able to be able to pop around the corner & have a chat & a cuppa with an old friend.  Sometimes just having a chat & a laugh with a good friend can often help lighten the load. I have noticed that I'm more inclined to be hermit like these days. I was only diagnosed about 4 months ago and apart from close family haven't really talked about my illness with many people. I don't think I appreciated how vulnerable the diagnosis would leave me feeling.  Most of the time I am v positive & determined to make the best of my life but like everyone I have my down times when the whole thing seems just too much to deal with!  It certainly helps to share experiences with other PD sufferers on the forum!

 


#3

Hi Suberry,

I'm glad you are able to stay positive most of the time. Four months, is still early days for you to come to terms with everything......it took me about a year. (3yrs. now since dx).

I, too feel vulnerable and have lost a bit of confidence. But a good social circle of friends and family, make all the difference. At the moment I'm heavily involved with our local Pantomime, as the Prompt!

My neurologist told me to do things I enjoy, so I try to do just that! I do hope you can keep cheerful and I agree, the forum is a great source of inspiration and knowledge.

 


#4

Hi Twinks, as you say it's still early days for me & am still getting to grips with it all really. I'm 61 but truly believe age is all a state of mind & am determined to not be defined by either my age or the fact that I have Parkinson's. After saying that the dx has definitely knocked my confidence. I've always been fiercely independent and it's not easy excepting that I am now going to need help. I deal with that by mostly not looking too far ahead and just doing the best I can now & having a laugh with my husband when my 'wobbly ' arm means I have to do things differently!! I count myself v lucky that I have a lovely kind & caring husband who is extremely patient!!  By the way love your picture of the little kitten. Is it yours? We have a lovely 5 yr old cat called KoKo who is really the Boss of our house & v much rules the roost! Which panto are you doing?

su.   xx


#5

Hi Su,

You sound very similar to me in personality! That's what's so great about this forum.....you meet some nice people.

The kitten was found in one of my chicken's nesting boxes, when he was 3 days old! His Mum was feral and had put him there for safety. We hand reared him and caught the mother and had her neutered and released again. He's now a gorgeous tabby with magnificent markings and long fur. My friend, nearby has adopted him, (she has 5 other cats!). We would love to have kept him, but we have a Patterdale terrier, who absolutely hates cats! At one time we had the kitten in a spare bedroom, a hamster in another room and the dog downstairs!

The Panto is 'Sleeping Beauty'........loosely based on the story, anyway!

Take care of yourself and keep in touch.   x

 


#6

Twinks and Suberry - you are both totally amazing people and have already helped me a lot (a total stranger), who is in total shock after a diagnoses of less than a week old; and all the while you are both struggling with your own recent PD and indeed even being three years post DX, that still seems like fairly early days to me, as there is a lot to come to terms with and to get your head around and as we know, things don't improve with time as PD relentlessly marches on, so do keep talking.   

Personally, I don't know anyone with PD except for you guys on this Forum and I think that it may be hard to meet anyone locally (I live in a rural area) whom I feel I can or want to share experiences with, but I will look into it and see if there is a group I can attend - but only when I am ready.  Indeed I wish we all lived closer - thank goodness for this Website/Forum - keep on posting.

Take care - Twist xx


#7

Hi Twist,

Thank you for your kind words. I know you will be experiencing all different kinds of emotion at the moment. A week is not long enough to get your head round things. I can honestly say that my condition hasn't changed much, in the last 3yrs., so don't get too downhearted. I still do loads of physical stuff, like cutting hedges, digging, etc. I even re-designed our patio this summer and moved lots of stone slabs and laid new turf!

I live in a very small village, too, so you never know......there might be someone near you with PD. My two friends also live in small villages. We did go along to our local PD group meeting, once, but found it wasn't for us. It was a dance session and the lady taking the class was very patronising and spoke to us as if we were children. Hated that!

Whereabouts are you? Also, Su, where do you live? I'm near York. Just thought it might be nice to meet each other, sometime, if we're not too far apart......say after Christmas?


#8

Hi Twinks,

  • You sound amazing doing all that!  I live down in Cornwall but do come up to the NW quite often as most of my family & lots of my friends live there. In fact we are coming up in a couple of weeks for a family wedding & my grandsons christening. York is lovely. I have visited many times & always enjoyed it.  We enjoy living in Cornwall but the only downside is it is so far from our family & friends & takes ages to get anywhere! I'm a bit like Twist in that I don't know anyone locally with PD & also live in a small village.  There is a PD group that meets monthly about 20 miles away but I haven't done anything about it yet. I'm not naturally a 'group' type person & with my job dealing with the public I have a tendency to be a bit of a home bird when I'm not at work.  Maybe I'll do something about it after Christmas....!?  I'll let you know when we come up in the new year & look at the feasibility of meeting up. Thank you for the support.....in the meantime keep up those good spirits & that good work it's certainly inspires me! It's always great to 'chat'. Take great care of yourself!  
  • Su.    xx

#9

Hi Twinks

You are certainly right about it being early days for me - lots to get my head around and like you and Su I am not a natural 'group' person either, although I guess, that might depend on the dynamics of the group and I wouldn't like to be patronised either as that sounds awful (very stressful too), so if ever I ever join a group I would want it to be non-judgemental, friendly, relaxing and fun.     

I come from Cornwall, live in Devon and have lived in North Yorkshire, so I know C'wall and York quite well, both are such wonderful parts of the UK.  It's a lovely idea to meet up next year sometime, I also wonder if there is anything happening through Parkinson's UK?

Well tonight I double my meds after a week on a half dose - I hope I'm going to get on with them as so far no real difference in tremor or any bad side effects (luckily) - so fingers crossed - take care all x

 

            


#10

Hi,

So lovely to have two new friends! I have relatives in Newton Abbot and friends near Launceston, so know your part of the world a little, as well.

I do believe that everything happens for a reason.

Keep strong, both of you.   x


#11

Hello Twinks, Twist and Suberry,

Enjoyed reading your posts so much. I'm having my DaTscan in the morning at Addenbrooks. Wasn't too nervous but now it's starting to kick in.whatever the outcome I too have a supporting hubby and family. Must admit I will be so glad to get this one over with!

My best wishes to you all.

Sue (lexi 255)


#12

Oh, all the best for tomorrow, Sue. Just close your eyes and try to think nice thoughts.....it's a long time to lie perfectly still, but it will all be over by tomorrow, at this time.


#13

Thank you Twinks. Appreciate the msg. 


#14

Hi Sue,

Fingers crossed for you that  everything goes well  tomorrow!   I find it interesting to hear how everybody is/ was actually diagnosed.  When I saw the neurologist he just took a verbal history, had me walk up & down. Move my head side to side, bring my finger up to my nose, press back against his hands & from what he saw etc. he came up with a diagnosis of idiopathic Parkinsons. I had no scans of any type.  I know there is no definitive test for this disease but the differing ways it's diagnosed amazes me!  Just remember Sue you have such great support no matter what the outcome of tomorrow is & that is so very important! 

Su. x


#15

Thank you so much Su. Yes you are right as people have been so kind and supportive ever since I came on here having been told I may have PD. Like yourself I had to do a few exercises etc but somehow I'm not sure she has got it right. Perhaps I'm just trying hard to convince myself. Will keep posting any news.

sue x


#16

Hi Suberry and Twist,

Been a while since we spoke, but hope you're both coping OK.

If you feel like meeting up sometime, just let me know. I am hoping to meet up with another forum lady, Bettyblue, in Lincoln. It would be lovely if the 4 of us could get together and support each other with our experiences of this illness. Might take a bit of organising, but hey, it would be good to meet you. We're all in the same boat and fairly early into our diagnosis.

Best wishes.

Twinks.

 


#17

Hi Twinks

haven't posted for a while but am ok. Bit more tremor in rt arm & leg with aches in both but overall ok. No meds yet still think will go down alternative/supplement route first when need to! Biggest prob for me is sleep disturbance....go to sleep for 2/3 hrs then waken & can get back to sleep ....always tired at wrk. Dealing wth public I need to be on the ball...& Awake!! Lol. Finding it tough!  Haven't seen anything from Twist...hope she's ok. First mths after DX can be tough! Would love to meet but more difficult with being at either end of the country. No plans to come north for a while but if you're  down sth let me know. I don't really know anyone locally with PD but am contemplating going to a local meeting...although haven't done anything yet. Do find myself more apathetic definitely! Roll on Spring. The longer & brighter days always cheer me up. How is life & PD treating you?...how did the panto go? Would love to catch up!

su. xx


#18

Hi Su, lovely to hear from you again. Sorry to hear that symptoms are troubling you a bit more. I don't have any tremor; my right arm and hand don't respond very quickly and seem to take ages to work. I am going down the alternative meds. route at the moment. Started taking Macuna Pruriens 2 weeks ago.

The Panto went brilliantly, thanks......all 8 performances were sold out. I'd post some pictures, but we don't seem to have the facility on here.

Yes, I hope Twist is OK too. It's a lot to get your head round and I think you go into denial mode for a while. My friend with PD is coming round tomorrow for a cuppa and a chat. She's not feeling too great just now and is thinking she needs to go on the Levadopa. I'll feed her cake as well, to cheer her up!

As you say.....roll on Spring. Although, to be honest, apart from all the rain, it's not been a bad Winter. All the daffodils are out, on our village green and the ducks are looking very frisky on the pond!

Hope the sleeping improves and you can stay cheerful.

Ruth.