Hi everyone :-)


#1

Hi everyone, just wanted to introduce myself as a newbie! I'm Simon, 43 years old living in sunny Cumbria. Married to Teresa and father to two beautiful girls aged  5 and 6.

I just received my Dx last week, having finally bitten the bullet and mentioned my symptoms to my GP in January. Feels as if it's taken an awfully long time!

I've been ignoring/denying/hiding my symptoms for probably at least two years, finding a range of excuses... injuries, stress, exhaustion etc. Does that sound strange?

Until earlier this year, when my symptoms made it impossible to continue, I worked as emergency ambulance crew. I've had patients at all stages of PD, and knew it was the most likely explanation for my symptoms, which is perhaps why I was in denial for so long. I now manage a private emergency response service for vulnerable adults (which at least means no more shiftwork!).

Just started on Ropinorole, low dose, little effect so far but also no side effects. 

Mood-wise, I kind of fluctuate between being philosophical about my Dx (I know there are worse illnesses than PD) and being incredibly frustrated and worried for the future and for my family. Mostly I'm somewhere in the middle, but it's been a tough few months for my wife and I. We've both shed more than a few tears, but thankfully it's impossible to be down for too long with our little girls around, they're little rays of sunshine.

I still consider myself lucky... I've a wonderful, supportive family, and I've achieved a lot in my 43 years so far... I've served in the Army, travelled a bit, climbed mountains, saved lives and helped a lot of people. I don't intend to let PD keep me from achieving a lot more... it'll just take a bit more planning now :-)

 


#2

Welcome,  bit of a shocker, yes an up and down journey , positive one day and the next not so much, thats ok a lot to take in.

A brilliant attitude to have,  the forum is a pick and mix experience have a look around, someone will always answer. 

Live your life, have fun and if need be have a good , moan and a groan. 

Take Care 

 

 


#3

Hi Si Mc, I feel your pain, I have recently been diagnosed and feel very similar, I am 50 and also ex army. Started Rasagaline a month ago which so far have had no affect so still suffering with the symptons.


#4

Hi Si Mc and Wildrover, welcome to the rollercoaster ride. Like you I am ex-Army, 23 years and was diagnosed in Jan this year. I am on Rasogline, 1 per day and Pramipexole, 2 per day. They have helped but I still have my tremor in my left side (arm only). I have found that I get tired quite easy, which is frustrating, especially after a walk. I have joined a local Parky group and go to Tai Chi and exercise classes every week. I get a lot of benefit from it and feel a lot better. Also it gives me the chance to meet other sufferers and exchange notes. I have noticed as well that since my alcohol intake has dropped I feel a lot better. I too have the support of a great wife and lots of mates (who extract the urine), in a friendly way. I am now 66. Remember, we have Parky but it doesn't have us! Good luck on your journey and keep in touch anytime.


#5

I can certainly relate to the mates thing extracting the urine. When i told an old army friend about my diagnosis he immediately showed empathy about my upcoming plight swiftly followed by “perhaps you should use this opportunity for a career change to cocktail barman”, good old squaddie humour!!


#6

Hi si mc,

PD diagnosis is a huge shock, even when you have suspected it for a while. I'm sure you wife&lovely little girls will be a tremendous support. But on here you can chat, moan& generally offload to others in the same boat. It does make a difference to how I feel. And saves me from bending my husbands ear too much!

Accepting the diagnosis takes a while, you can't rush that and unfortunately some friends make unhelpful comments.

But there's a whole lot we can still do. Specific exercises do make a noticeable difference, if you can find time to fit a few into your already busy life


#7

Hi Daffy,

Totally agree. It is a shock but thanks to this forum you can moan and groan and share your Parky stories, treatments, etc. I agree with your comment about unhelpful comments, but most of my friends just take urine!

Have you visited any research establishments yet?. Went to Oxford Uni last week and had a look around their research labs. Very good but they need money for the equipment. They are making progress though. I'm 66 but a cure prob wont happen in my lifetime. Still, there's always hope.

 


#8

Hi shakeyboy, Like you I don't mind a joke. It's the doom mongers I can do without.

I have volunteered for research at the JR in oxford. My husband joins in as a healthy control. We go every 3 months for 2 years. 9 visits in all. We both have tests to do (about 1.5 hours) and they can track changes. I found out about it on parkinsonsuk website. So far I appear to be one of the "lucky" ones. My PD is progressing slowly at the moment. I haven't been shown round any labs, but I probably wouldn't understand much about it. Unscientific mind. D


#9

Hi, I am fairly new to this as was diagnosed in August 2016. At first it hit like slamming myself into a brick wall... I've had a neurological disease since 2003, so know the way these things go and understand that everyone is different. I too have very positive days and when I allow myself to think of the 'Parkinsons' happy future, I become thoughtful and moody. But, I get myself out of it pretty quickly! I cannot afford to stay down for long and it doesn't help the enjoyment of life as it is now. 

I do live my life. Some days i have a massive grump! lol :D 'vent' as in letting off steam and then I carry on with the day to day challenges. I am a very positive person and think "Ok! I can do this". I have a great supportive network around me and thank goodness for that. :)

Got to have bad days, to enjoy the good days.

Anyway, thanks for listening.

 


#10

Hi Daffy. Can you send me the details of who to contact at the JR. I would very much like to have my progress tracked as well.

Thanks in advance.

 

Shakeyboy1


#11

Hi Shakeboy, out of curiosity do your current meds help with muscle stiffness (do you have muscle stiffness). I am currently on rasagaline with no effect but will likely go on to something similar to yourself or Ropinorole in the near future. Just wondering if I can look forward to some stiffness relief, my stiff neck is paricularly bad.. I dont have a tremor, not yet anyway.


#12

Hi Wild Rover,

I was diagnosed in 2012 and my main symptom was muscle stiffness,and I have never had a tremor.

I was  started on Madopar  and this greatly helped with muscle stiffness. This has been my main medication   and still is,hope this information might help you.

Cheers Anne 

 

 


#13

Hi Wildrover, I still get a very stiff neck despite the tabs, and I find that doing a bit of exercise helps relieve the stiffness. Are you involved in any Parky groups?. I do Tai Chi every Tuesday, and physiotherapy exercises every Thursday. They are a great help and make me feel better. I have a small tremor on my left side. Its a pain when I have a pee and have to use my rite hand in case it goes all over the place (gotta laugh). Looking forward to my first beer on Nov 1st. Just a quick one matey, which Regiment/Corps were you in?. Keep in touch.


#14

Hi Shakeyboy, thanks for the feedback. I was in the Royal Signals, left in 1998 as a sergeant after 15 years which included 2 years as a junior. Joined straight from school at 16. What about yourself? I have started a Pilates class and go to the gym everyday. The exercise does help me but its generally only short lived. Feel good during and shortly after exercise but within a short time frame of being stationary, for example driving home from the gym I just seize up again. Getting me down to be honest, thats why i am hoping the meds will make it better.


#15

Hi Shakeyboy

If you look on parkinsons uk home page, the research tab it takes you to the various opportunities there are to get involved in research. I think they may still be recruiting for this particular research. There's a link on there to get in touch with them. That's probably your best bet.  D


#16

Hi Peonie,

PD is quite a roller coaster I agree. I was diagnosed spring 2016. I know what you mean about having to get yourself out of a low mood as quickly as possible. With me once the "downs" really settle in they can take some shifting. But a good old fashioned moan to someone helps too. It's great you have a good supportive network - makes all the difference I think.

I found a huge part of the battle was learning to accept the diagnosis and trying to get on with my life as it is now. Sometimes easier said than done.

Sinmet was the first drug I was given and it seems to work well for me with no side effects. Ok it's no cure but I certainly feel a lot better than before I started taking it. I hope it works well for you too. Daffy


#17

Hi all,

I am no expert but I am coming up to my 10 th  anniversary with PD and most of the time really positive.  I personally think physio is very important to ensure you are doing the right exercises.  

In my area you can self refer to see community physio, and neuro specialist physiotherapist is a GP  referral.

Yoga, pilates and similar core strength and stretching always great 

Physio will teach specific exercises for PD to maintain posture, balance and strength as much as possible. I wish I had seen them earlier as I was doing a few exercises at home that were making things worse !

 I am still out and about, do my own shopping, I drive a car , go out for meals and enjoy life.  I also write rubbish on this forum.

At the moment I am a bit of a misery guts as getting over bronchitis but social services didn't whisk me off to a care home, so must be managing ok  : )

I am not ashamed to admit its depression that defeats me so on occasion usually for a 6 mths period  I take anti depressants its not long before they kick in and get me going again.  

Well I've rambled on a bit, 

TH

 

 

 

 

 

 

 


#18

Hi Wildfover.  I was in the Royal Corps as well. 1969-1992. I was in the sneaky Beaky lot. 14 Sigs, Chicksands, JSSU etc. Keep those exercises going matey they do help. I've just had a 6 month review and the consultant told me to keep it going. Meds may help but you have to rely on your own discipline to do those exercises!.


#19

Hi Tee Hee, I am very much like yourself. I have great days but I still get depressed sometimes. 

It is the fiz that keeps me going and if I miss a day, I get stiff and get mad with myself which gets me down at times.

Chin up.


#20

Hi shakeyboy, wow small world, presume you was a spec op or similar, I was a DTG then later sys op. I did the divisions and brigade units. We will have to chat some time.