Hello to all


#1
Hi,my name is Russ and I live in beautiful Cornwall. I was diagnosed last June and had full confirmation following ten days in hospital where I had a DaT Scan in November 2011, I was 43. Both for me and my family it came as a very big shock. It has affected all my left side and includes symptoms (which seem to gain pace daily),lack of balance,shakes in hand, arm,leg and foot, muscle spasms, virtually no sleep, no appetite, no enthusiasm or that get up and go feeling and feeling down and fatigued, memory and concentration is alsopoor. Recently I have seen a new neurologist who has confirmed the disease has spread to my right side (however not as severe as my right). My walking is slow and my joints ache.

Prior to this condition I was very fit and active and always happy now I feel that I am in a box. My meds are still being tailored and I hope they will be sorted soon.I am desperate to get back to work and get some structure, but it is very difficult. Its true I get the good and bad days,but at the moment it seems they are mostly bad.

I like animals,I have 3 dogs, 2 cats, fish, rats, chickens, ducks and a goose so they do keep me busy. When I can I referee football (prior to the illness I was a level 4 which meant I could officiate at a very high standard).

Can anyone else relate to how I feel? What advice can you give me? I see my Nurse who is outstanding but I am reluctant to go to group sessions.

Apologies for going on, but it feels good to get it off my chest, as my wife is probably sick of hearing it, she is and has been fantastic would hate being alone with this.

Best wishes to all Russ

#2
Hi Russ

You are in good company, there are lots of us who can relate to how you feel.I live in beautiful (but wet!) Cumbria and was a very fit outdoor person until being felled by this in Nov 2011, although I had been going downhill rapidly all last year. I was not dx with PD until March 7th and started on meds the next day. They have made an improvement in how I am along with not giving up and getting plenty exercise.

In Dec 2011 I was so bad that I could barely walk half a mile and walking up our drive was like Everest,but now I have worked my way up to 9 miles and have climbed some of my beloved mountains. I have a long way to go before I get back to where I was but set myself achievable targets and every time I make it set a more ambitious one. The first time I managed 2 miles I thought I was going to die with the effort and despaired of getting back in the hills, but I am still here and improving slowly.

One of the main things for me was to get rid of the stiffness and aches and I have started yoga and do lots of twisting and bending. I also started going to our local Toning Tables which helped a huge amount to get back the lost movement.

There are good days and bad days, on a good day I can almost forget I have it apart from the annoying tremor in my left leg, and the bad days are nothing like as bad as they were last Dec when I just wanted to die.

One thing I have learnt is be 100% positive that you are going to beat it.

Best wishes

Topsy

#3
Forgot to say I am 58 and have 1 cat and a lovely partner who is finding this as hard as I am.

Don't be frightened to go to a group, I went to my local one just 4 days after being dx, yes I was Very Frightened of what I might find but I spoke to some very inspiring people and came away feeling much more positive.

#4
Welcome Russ,

When my husband was diagnosed at the age of 39years we were shocked too,I was already disabled with a chronic back problem from nursing and our son was just ten. Now my husband has had pd for 30years and he still amazes us by going to college two days a week enjoys watching rugby and going fishing in the fine weather even though he is now in a nursing home.
I won't be silly enough to say life is easy it has it's problems but if you work with the illness and don't fight it as M/H still does, it will be easier for you and your family.Just some info on my husband he played all the sports when he was younger and ran a marathon with pd. He has always liked photography, gardening, cooking bird watching and many other hobbies and has won many prizes for these over the years, so live life as best as you can and keep busy. I to lived in Cornwell when I was younger and am from Devon now living in Somerset.My best wishes to you and your family and good luck,
vivian

#5
Hi russ
Welcome to the forum. Lovely people on the forum all with good advice should you need it. Comming to terms with the dx can take a while as shock and other emotions take hold. Think positive and do everything you want to do .
Look forward to you posting on the forum and see you round.

take care
love PB x

#6
Hi Russ,

A woman walked past me today in a supermarket car park, she looked about the age i thought i (once) looked like and appeared vibrant, confident and trendy, for a brief moment i grieved that i couldn't feel like the way she looked again:cry:may be meds will bring back these brief moments for me but the realist in me knows my life is waiting to be changed.:disappointed:So yes, i think i understand how your feeling.

Sorry to sound so glum, (a brief weakness) tomorrow i shall go onwards & upwards!

Best wishes

Diane

#7
thanks for the pos tips it is nice to know we are all in the same boat, all the best

Russ

#8
what wonderful people and what a support! Dx a year ago, coping, with sinemet plus. It was my son's wedding last week, proud to say I managed to keep up and we had a really lovely family day, concluding with everyone on the dance floor armsa round each other, singing "hey jude"! A great day, shows that some energy levels remain. bit tired now

#9
Hi Russ...

... already said, I know, but a warm welcome.... and you already know, I'm sure, you are in good and understanding company.. so please, as the song sort of says, "once you have found xxxx never let xxxx go"... You will get so much support, and always someone to pour out/and shout at when it seems never-ending..

We have a few bits in common... love of location (we are in a tiny village between Folkestone and Canterbury - a real little community)... we also have cats - always have - good for the kids when they were little, good for us.. and wonderful for me now - (some days when they act as hankies... i.e. tear-stained damp fur!)..

Me? My name is David, 66, retired College Bursar... lovely wife and two kids in their 30's... diagnosed Jan'y 2011 (but realise now not right some time before that)... Affected left side.. slowness, stiffness, tight abdominal muscles and a dollop of 'angst'... I understand "grieving"... I used to run most days.. and lots of lovely foreign places (took my kit on holidays)... and used to play piano.. but.... (wish it was the flu - then it would go away!)..

But... do go to the gym (do weights, rower and treadmill) and also to local choir.. I don't do 'positive' readily, but if I can get up to a good day and keep my thoughts from dwelling on 'stuff' then it seems to work better...

Do be part of us now you've come along... do keep us informed... and if you'd
like to, I'm happy for you to send a private message (haven't found a reason yet not to allow that facility..

Take care.. and take our thoughts with you... warmest wishes... bursardavid.