I've decided that, seven years after being diagnosed with Parkinson's, it was probably about time I hunted out fellow sufferers for a bit of a chat.
I was diagnosed when I was 52 with mild hemi Parkinson's which the consultant reckoned I'd had for at least a year before coming to see him. Bit of a shock really, as I thought the shaking was down to a trapped nerve after suffering from a frozen shoulder! No such luck! I've spent those seven years, not exactly in denial because you can't can you, but trying to keep things as normal as possible at home for my husband. During that time we moved down to Somerset where I've finally been zoned into "the system" so have now got the support of a Parkinson's nurse and physiotherapist. But, no-one can really understand your situation better than you out there.
I'm very fortunate in a way because I was young when first diagnosed and the treatment is keeping things at bay, so as people constantly say to me "you don't look like you've got Parkinson's ". Don't you hate that?! But as time slips by so the meds have to be increased slightly and it gets harder to try to hide the shaky arm! My husband I think, is in complete denial about what's coming and so I fear he won't be capable of looking after me when the time comes, whenever that may be.
On a positive note, I took up the guitar about four years ago. I'm enthusiastically intermediate to terrible but absolutely love it. It's a fantastic way to work the brain to hand co ordination and has helped to strengthen my left hand. Worth mentioning to you all.
Right Ho, I've gone on long enough!
Would love to hear from anyone really
It's good to hear from new people. I'm 52 now and diagnosed 18 months ago. It's heartening to hear that 7 years on you're getting on well (even if it is with the help of more meds).
Find what you need from the forum and ask questions. There is always someone with opinions and knowledge.
Thank you for that. Yes, a positive attitude and sense of humour helps enormously.
i was just reading through the obsessive compulsive posts. Interesting, as I'm in the same boat. As my husband says, I keep the Hermes delivery van in business! However, the majority of what I buy, mainly clothes, etc, goes back. It's the thrill of waiting for it rather than anything else. Interestingly enough I also sell a lot of stuff.
I take it it's the dreaded Pramapixole that's causing the problem. I'm loath to swop it as the weight loss has been an advantage! (Well, at least I'm honest) but I suppose I had better speak to my nurse on my next visit.
I'm in my 60's, diagnosed last year. I had suspected PD for 18 months or so before diagnosis but now realise from other symptoms I had never realised were PD that I must have had it for some years even before then.
I'm on low dose sinemet, which seems to work ok for me. No OCD fortunately. I keep active walking the dogs, keep bees, do a bit of tai chi a few puzzles etc. And try to keep positive.
like you people tell me I look well, which is nice but inside I don't always feel so good. I have a supportive family but my adult children have their own lives to lead and my husband 12 my senior although great seems not to want to learn much about PD. Which is strange as he has enrolled with me, as a non PD control in a research project.
He will always listen to me and has been my rock ever since we met when I was 20, so I'm probably being a moody so and so when I say that I too feel a bit scared and alone in all this at times. That's where this forum is helpful. Sometimes I just read some posts and it helps me get back to "normal" a bit
Hi Daffy and Bess,
I'm on Ropinerol and am due to increase it in Oct. I'm nervous about this due to the OCD factor.
Daffy, how is the tai chi for you? I'm doing Qi Gong and finding it beneficial.
I agree that even though I have good support you can feel very alone in our situation.
Bess, glad you found a Pd nurse, I find mine invaluable.
I find Tai Chi very good. Not at all strenuous but, stretches and loosens joints gently. It also makes me concentrate and so leaves me feeling more relaxed in the mind, if that makes sense?
I only go once a fortnight with a non PD friend who finds it helps her too. But in between times I try to do some of the exercises now and then to loosen things up a bit.
What is Qi Gong - I've heard of it and know nothing about it but I have a feeling someone told me it is related to Tai Chi
Do you mind me asking how often you see PD nurse. I've only seen a consultant once (when I was diagnosed) and never been offered another appointment - I think the idea being "yes, you've got PD, there's nothing else I can do"
I've seen PD nurse twice and she was very helpful but I'm wondering if I will get another appointment, last one was in February
My husband must have been reading my mind as he instigated a little chat about PD today. Nothing earth shattering just a nice little chat.
Just been to Qi Gong tonight actually. I go every Tuesday. Yes it's related to Tai chi. I think the teacher encourages people to take Qi Gong first and then Tai chi.
I've seen my consultant probably 3 times in 18mths. Some times for about 2 seconds, which is upsetting. My Pd nurse is more contactable. I've seen her about 3 times this year and due to see her in Oct. I also ring to ask questions. Maybe you could ring her and ask for an appointment or ask her any questions?
Thanks for your reply. I think you're right maybe I should see if I can see my PD nurse again. I've been reluctant to chase her up as I know she has been ill herself.
Also I'm not sure if I'm willing to up meds yet. I've few side effects from them so far and I'd like to keep it that way, for as long as possible. So that makes me wonder if insisting on an appointment would do any good. I don't want to waste her time. I'll have a think. Thanks
Hi Daffy and Divine 1
Sorry I haven't been in contact...had my mum to stay (nearly 90 and very exhausting!). Anyway, Daffy, the best thing I did was see my PD nurse. She's been the only person I can talk to who has a complete understanding of what you're going through and how to help yourself. You should be able to see your nurse, really whenever you want to, within reason, so keep in contact with her/him, they are brilliant. My consultant I saw back in January doesn't want to see me again until next March! I had to rearrange an apt, and that was the first one I could get! Do either of you find a lot of benefit from your exercise lessons? I've been thinking of getting a trainer who knows about PD and it's needs, I need to do a bit more exercise rather than running around like an idiot in the home. Also it would give me a bit of 'me time' away from my lovely husband, who is useless bless him! We've just found out he has peripheral nerve damage and has difficulty walking. I'm very concerned now about his ability to look after me in the later stages of my PD. I certainly won't be able to look after him.
A bit of a pickle!
Yes I agree the PD nurses are invaluable (when you have a good one).
I believe any exercise is better than none and from what I've been reading can help slow down the the progression of Parkinsons. I guess it depends what stage you are at and how much you can do. I go through phases of being really on top of my exercises and other times not. I notice the difference though when I miss out.
That's a real worry about the future and your care. I'm certainly no authority but I guess putting things in place now is a good idea.
It's hard isn't when this PD is so unknown.
Thanks for the advice about Parkinsons Nurse.
Yes I do find exercise helps. I know running around the house keeps you busy, there's always stacks to do. But I find Tai Chi is good for me as it makes me stretch and straighten up. It also seems to still the mind and it gives some me time away from my husband. I love him to bits but we do all need time apart occasionally.
Someone suggested PDwarrior. I believe it started in Australia and has now spread around the world. I think there are courses on it and you can get one on one tuition I think. But someone else said there are PDwarrior exercises to follow on utube. I thought I might give that a go.
I can empathise with your concerns about what the future holds. Fortunately my PD is progressing slowly so far but I am acutely aware that one way or another I will probably end up dealing with it alone.
My husband of 38 years is 12 years my senior and has emphysema and now arthritis in his hands. He is quite active and copes with both very well but...... I try not to think about the future too much, it only gets me down. I know I'm being a head in the sand ostrich but there doesn't seem to be anything else I can do except cross bridges when I come to them.