Some personal info from a 'newbie' - with a request for feedback.


#1

Hi all - I’m 75 - an ex-distance runner who has been pretty fit for most of my life - but during the last few years I have have started to get a lot of pain from arthritis of the neck, hips and knees.
What has this to do with Parkinson’s? Well … I started to experience quite a pronounced jaw tremor about a year ago (I can stop it anytime if I focus hard - but it restarts when my mind gets occupied elsewhere) - which I assumed to be a result of nerve damage caused by the arthritis in my neck. My neurologist suspected otherwise however, and I was sent for DAT & MRI scans - which revealed that the tremor was actually an early symptom of Parkinson’s.
I resisted this idea for several months - but other symptoms have been starting recently which have convinced me that his diagnosis was correct (variable tremors in my arms, cramps in my hands and feet, sudden episodes of fatigue and uncharacteristic mood swings to mention just a few)
As a starter, I have been prescribed Rasagiline … which seems to help, but at this stage it’s difficult to know if it’s having any effect other than that of a placebo.
I’m coping OK psychologically for now - but of course I can’ help dreading the future effects of escalating nerve damage - whether from my spinal arthritis or Parkinson’s - especially any further shift in my basic mentality.
I assume there must be many members on this site who have had to deal with a similar situation to my own … i.e. a mixture of severe arthritis and PD.- and ifd so, it would be great to hear of their experiences, strategies and get their encouragement and (hopefully!) re-assuring advice… thanks in hope!
Vic Davies.


#2

Hi vicdavies

There are some similarities between your PD and mine. I was diagnosed in January this year. I am 83 and have never been very fit and ac tive like you. In recent years my husband and I have both been visiting a gym twice a week (H is very fit like you but bit older- 91 later this month.) I have chronic osteo arthritis pretty well everywhere and have had two knee replacements. My main PD symptom was a tremor in my left hand, but since taking the medication (Sinemet plus and two months later Rasagiline) the tremor has disappeared. I do get very tired but have difficulty sleeping unless I take a sleeping pill. I have not experienced any cramps like you, and am still managing to feel quie positive about the whole business. I am still the same person and not noticeably any worse than I was before the diagnosis.
I am getting involved in sme research programmes - they won’t help me pesonally but may help others later on, and I find this quite interesting.
Every now and then I get concerned about the future, but then try to remember to make the most of every day - after all I could fall under a bus tomorrow.

Don’t know if this is of any help to you, but here’s wishing you good luck with whatever you do.
Knine
Audrey


#3

Thanks for this … I have been a non-communicative member of this forum for some time … I must admit that I found it hard to read the posts being shared by so many members who are clearly suffering with far worse PD symptoms than mine, without inevitably contemplating that a similar fate may well lie in wait for me … which I guess explains why it took a while for me to muster up the courage to put that post together …

You clearly have a great attitude … bless you for that - your quick reply makes me glad to have finally opened up! Like you, I have always been fundamentally optimistic … and I definitely have a high pain threshold … as you may imagine, distance running has often required the deployment of both in the past! Sadly, my arthritis means that my running days are over - but I try to walk a few - painful - miles each day … do you?

The other thing that helps enormously is the distraction provided by my continuing work as a self-employed antiques and collectables dealer - which I still focus on for several hours each day … the remaining hours being given over to my role as house husband to a much younger (and largely-undomesticated!) career woman! She’s absolutely dedicated to her work - she’s very successful, and that success is essential to her quality of life: so much so that I fear one of the greatest threats posed by PD is the effect it’s likely to have on her - rather than me.

Once again, thanks for your friendship Audrey … let’s keep in touch - I’m sure we have a lot of stuff still to share, which will be really helpful for both of us.

Vic


#4

This may sound harsh BUT, as my dear Dad said when my OH was diagnosed aged 47, and he at the time was aged 79, he wished it had been him diagnosed as he would be long gone before it was really bad. He latterly was employed as a carer, having taken early retirement, so knew full well what a diagnosis of Parkinsons meant in the long term.

We have, until recently when a life threatening pneumonia resulted in a hospital stay of 101 days, had a very good quality of life, for the first 15 years, and latterly a reasonable quality of life for some years after that, and only now has that deteriorated to having carers in every day.
So, at 75 and 83, you are both rather fortunate, you may not see it as that, to have been diagnosed later in life, rather than in your 40’s and may well/will have, many more years ahead without serious and/or life limiting problems. OH now has dementia as well, so our future, in our 60’s seems rather bleak right now.


#5

Hi Vic,

I was going to welcome you to the forum having read your original post, however, a very warm welcome now you have "come out "as it were.

Like you I also suffer from arthritis. Earlier today my Surgeon agreed to replace my second knee, he refused to operate 10months ago due to my legs, ankles, and feet being swollen.
My legs ache continuously and its difficult at times to know is it as a result of arthritis or the PD. At least once its done i wil have two strong joints and more able to cope.
I am now 72 and was diagnosed three years ago. I was living life in the slow lane, started to shuffle and walked with a stoop. my face seemed to have a gormless fixed expression. I could not understand what was happening to my body!
This sounds stupid but when the Neurologist told me it was PD, I had a feeling of relief, my fear was that I had suffered a stroke. After I had wiped the tears from my eyes and we had arrived home, my wife of 50 years said we will fight this together. So again like you, I am more concerned about my wife and so very sorry she has to endure this at her age.
We continue our fight together and determined not to be downhearted. One day at a time and like another friend told me “You are not alone”, Vic.
Best Wishes to you both

Mal.


#6

Of course I can understand where you’re coming from … whatever the future holds, I know I’ve been lucky to have been granted good health almost all my life, and I’m truly grateful for that. As to how long I’ve got left to live - and for my symptoms to worsen - who knows? My neurologist tells me I can realisticalluy plan to stay on the planet for another 15 - 20 years … but he can’t predict just how much of that time will continue to be enjoyable (!) - in which connection please accept my most sincere sympathy regarding OH’s dementia … several members of my family have suffered it - and having watched them (and their carers) struggle to deal with such an ongoing nightmare, obviously it’s what I dread most for myself …

I know full well that it’s far easier for me to say this than it is for you … but I guess whatever age we are when we get our PD diagnosis, we can only live for the day and the moment, because whatever will be, will be … regardless of advances in medication and the best efforts of our wonderful NHS, everything else is basically beyond our control.


#7

Hi Vic
Pleased to see you have had several replies, all with interesting things to say. As somebody said we are all different, and PD strikes us in different ways. You mention walkng a few painful miles each day - I would be pleased to be able to manage a single mile any day. I use a four wheeled walker to get around, but that aggravates my arthritic wrists so have to wear braces on them. I am trying out some Urban Poles - used for Nordic walking but without the loops at the top. Instead they have “shelves” on which you can push yourself upright and hopefully avoid the dreadful stooped posture that doesn’t feel so good and makes you look even older. I am slowly getting the hang of them and using them to walk round the garden. Quite tiring I find but worth persevering.
Your work with antiques etc must be interesting and will keep your mind busy and occupied. For my sins I am the Chairman of the Fundraising Committee of the Framework Knitters Museum in Ruddington, just outside Nottingham. I was Chairman of the trustees until I stepped down in September last year. We all need an activity to keep the old brain cells working, even if it is at a slower pace than before. And feeling that you are doing something useful is good. It’s good that you can support your OH. My husband retired moe than 30 years ago and has acted in that capacity for me ever since. I think I have become quite lazy as far as household matters are concerned, but we now have a part time housekeeper who helps us both and keeps things ticking over.
Today I am thinking about my daughter who will be doing the Great North Swim tomorrow - 10K in Lake Windermere - hope the water isn’t too cold!. Next week we will be going on holiday together - we have taken a cottage in Hampshire for a week. She does the driving and looks after me and, weather permitting we visit loads of gardens. We hire a wheelchair so that when I am tired she can push me around so i don’t miss anything. We have done this each year now for a few years and I really enjoy it. Otherwise we don’t get much opportunity to spend time together.

So, let’s make the most of what we’ve got and keep on plodding on.

Best wishes

Audrey


#8

Thanks so much for your warm welcome and good wishes Mal.
Right now, I haven’t got a lot to add to my original post, plus what I’ve said in my responses to Audrey & Benji … except to ask you (all) what you might take for pain relief? Right now I don’t routinely take anything for my arthritis (obviously I’d prefer not to start taking any drug that’s potentially addictive - like Cocodamol or Solpadol - but when the pain is really severe I find Ibuprofen helps … despite having been warned off it by my GP - who says there’s a high risk of liver damage when it is taken long-term),
Be that as it may, like you and your wife, my wife and I are determined to love and live our lives to the fullest.
Onward and upward!
Vic


#9

Sounds like you and your family are pretty positive-minded and active Audrey! Rock on!
Do give my best wishes to your daughter - I’ll be thinking of her as she does that swim tomorrow ( good distance swimmers have my wholehearted admiration … I’ve done a few triathlons myself, but swimming has never been my strongest discipline, result: I had to push myself extra hard on the bike and on the final run to make up the time I’ve lost in the water!)
Cheers
Vic


#10

Thanks for the good wishes for my daughter’s swim. I spoke to her a few minutes ago and everythng seems good for tomorrow - slightly warmer water, and less choppy than last year. She sets off at 12 noon, so we will be willing her on. It makes all the hours I spent driving her to swiming lessons etc very worthwhile. I am full of admiration - to even think of tackling 10k in the water, and she does her training in Salford Quays which doesn’t look very salubrious.
Fingers crossed for tomorrow.

Audrey


#11

I take Gabapentin - don’t know how much it helps, but it seems to take the edge off.

Audrey


#12

Some just don’t get it, but never mind.70’s, 80’s, 40’s… a whole different world.


#13

I think I have every reason to ‘get it’, Benji. My first wife was diagnosed with breast cancer at 46 … she suffered a great deal during her 6-year fight against it, which ended in 1991.


#14

Hi Vic
My dad is at the same point as you, he’s 80 tomorrow and been very fit and active until October last year, first off the docs thought he had depression and anxiety which he has, but after seeing a neurologist and having an MRI they’ve started him on rasagiline, what I want to know is, have the rasagiline helped your mood? Dads on sertraline too which he has been on about 3 months or so, but he’s so down…

Thanks
Lynne


#15

Hi Vic
Saw your post on the forum the other day and I had no advice to offer you on having athritis as well as PD (but if I was you I’d stay away from the bookmakers)
Seriously though I’m glad you finally found some people who have more experience than me and hope you find something worthwhile on the forum I find even just the friendship of like minded people a comfort.
Hope you find what you’re looking for good luck Vic TOMMY


#16

Then you do understand where I am coming from in my previous post.


#17

Hi Lynne

Since my diagnosis I have certainly experienced a lot of unpredictable mood swings… for example I regularly switch from hyperactivity to listlessness - and maybe the very next day I’ll start in jokey high spirits, only to descend into a state of anti-social irritability by lunchtime.

That said, I give thanks to God that I’ve never suffered from depression as such … which means I’m probably not going to be a useful witness to rasagiline’s effectiveness in that regard. More than that, the jury’s still out on whether rasagiline is helping in relation to my other symptoms. Judging by most other posts on here, my present aches, pains, mood swings and energy dips must be regarded as nothing more than the tip of my (future) ‘iceberg’.

That being so, I can’t tell whether or not (mixing my metaphors quite shamefully!) rasagiline is holding back a potential ‘symptom tsunami’ - or if my PD has simply reached a kind of natural ‘progression plateau’ (here I go again!).which bears no relation to my current medication at all. (maybe I could stop taking the tablets for a few days - see what happens, then get back to you(?) - hmmmmm - I’d better take professional advice before I try that!)

Whatever, please give your dad my best wishes and sympathy - I wish I could be of more help.

Vic .


#18

Benji - I do indeed - but that said, I simply can’t start to guess how hard life must be for you and your OH.
God bless you both.
Vic.


#19

Thanks for that Tommy (Thomas is actually my first name too … I’ve just never been called by it).
Like you, I do find a lot of comfort in this interaction with others. Good luck and God bless -
Vic (a.k.a. Tom)


#20

Thanks for that suggestion Audrey - I’ll run it past my GP. (How did your daughter do on the swim by the way?)

Vic.