Newby - About to be diagnosed


#1

Hello everyone.
I am not yet diagnosed with Parkinson's but there can be no mistaking my symptoms.
I have the classic tremor at rest in my right hand with a tremor now starting intermittently in my right leg, together with muscle rigidity and attendant muscle pain, etc. I now have very little functionality in my right arm/hand with only grip and release capability left. The worst however for me is the anxiety and depression. I seem to wake up every morning with a deep sense of foreboding. Parkinson's seems to amplify the slightest bit of stress into a major worry/anxiety attack. I have been off sick from work for four weeks now as I am just unable to handle the everyday stresses of my job with going into meltdown. I restart work this coming Thursday and my employer has kindly given  me permission to work from home until I start medicating. I hope I will be able to cope outside the office environment. I am indeed fortunate to have a sympathetic employer.
The good news is, and finally after 3 years of faffing around, I will be seeing a Neurologist for the first time early in August and due to the rapid degeneration in my quality of life and my age (59) will not hesitate in accepting whatever drugs are prescribed.
I apologise for sounding  so downbeat, my bad days currently outnumber the good ones. It seems a pity to me that one has to be reduced to the state I am currently in - almost a mental wreck unable to work - before the GP\NHS responds.
This forum and the hosting website have helped me enormously in getting a better understanding of the disease and what my future prognosis is likely to be. 


#2

 

Hi and welcome Sumbloke

No need to apologise we've all been on or are along the same road.


#3

Hi Sumbloke,

those of us on this site with PD and caring for PWP know exactly where you are coming from I was DX June 2013 age 47 got DX within three months but I am a pusher and have fantastic GP. The one this I can tell you is it is a fight , it's one that I am intending to win start researching clinical trials I am on one in London that I found on the MJ Fox Trial finder Website. There are also Parkinson UK support groups country wide I am a member of Lincoln branch and the friendship's I have found there have been invaluable. If you need medical advice this site had PD specialist nursers whom call back within 24hrs. All of us as members try to help each other as much as possible, the one question I would asked your Neuro is what stage you are at as a lot of Dr's seem to not tell their patients. You may be surprised by the difference the meds make give them at least three weeks to get established into your system if you need to talk pm me I will do what I can to help.

Best wishes try to be positive stress is the worst thing for us BB xx


#4

Good morning Sumboke and welcome to the forum. 

As sea angler said no need to apologise we are all on the journey. 

It sounds like you have a very supportive employer, and its good that you are able to work from home, if you don't mind me asking what is your line of work?  when I was diagnosed age 51 it came as a shock but with the help of my family, friends and employer I have continued  to work fulltime as a Senior Charge Nurse. There have been various adaptations made in terms of working hours, however now at 55 I have decided to retire. I hope you get reassurance when you see the Neurologist, and to make sure you get answers to all your concerns make a note of everything you want to ask. If you want someone to be in the consultation with you that is acceptable, I always find it beneficial to have my husband with me for my appointments, it is also  very helpful for him. As Bettyblue says the local support groups  are good I attend the  Aberdeen branch. 

Best wishes


#5

Hi Sea Angler, BettyBlue and Bethankit,

Thank-you for the words of encouragement and advise. Once I am officially diagnosed I will make contact with my local support group. I will also be looking partaking in clinical trails if the job will allow.

Bethankit, I am an IT data centre technician (look after rooms full of servers) employed by the NHS.


#6

Sumbloke apologies  for not spelling your  name correctly in the  last post, tablets are a curse. 

Working in the NHS  you should get  good support, I know from experience  that OHS have been  very supportive  both for myself  and  my  manager, if this has not already  happened it might be worthwhile  for your manager to refer you, even if PD is not the diagnosis. 

Regards

 


#7

Hi Sumbloke,

If you need any help with the searching in regards to the clinical trials feel free to give me a shout there are thousands out there I took over 6 months to make my choice. Turns out the one I chose ( now completed recruitment) the lead researcher knows my PD specialist. In the PD field that might seem a high probability but London to Lincoln is a fair distance.

 

BB x Stay Strong thinking about you.


#8

I did not notice the spelling mistake until you mentioned it Bethankit :)  Thank-you for the advise regarding OHS. I will speak to my manager when I get back to work. 

Sumbloke


#9

Hi BettyBlue,

I am very interested in taking part in clinical trails - what is there to lose. My local hospital's Neurology Department has links to the Regional Neuroscience Centre at King's College Hospital, London. My assigned Neurologist is a consultant at Kings as well as my local hospital here in Kent. I am hoping this will be advantageous in terms of access to and partaking in clinical trials. I have an appointment with the Neurologist the second week in August and will speak to her regarding clinical trial participation. Once done,  I will get back to you for further advise and links if I may.

Thank-you for your support.

Sumbloke


#10

Hello, Sumbloke -- a belated welcome from the U.S. (Oregon)!

You have already received excellent information and advice from other members of this forum, but I wanted to add my bit.  At first a suspicion of and then a diagnosis of PD can, indeed, be depressing.  And it takes a while to work through the period of mourning for your lost health.  But it does get better!  Once you reach a point of acceptance, you can begin the fight bettyblue refers to.

For most of us this is a slowly progressing disease.  (My case is particularly slow:  I've had PD 18 years and am still living the same life I always did.)  The right combination of medications will counteract your symptoms, probably much better than you now think. In addition, a program of regular and vigorous exercise will do wonders for keeping you strong and supple.  We're told that optimism and laughter help, too, aiding in the production of dopamine.

It is hard to see beyond the illness or its symptoms initially, but most pwp who fight against it do have some degree of success for years.  Your symptoms sound very much like my first signs of PD, which began at age 51, though I was not diagnosed officially until 56.  So maybe you will be as fortunate as I have been and will find the meds that work for you.  Bets of luck!

J


#11

hi sumbloke,

any help i can give you i will be happy to.

bb x


#12

Hi J,

Thank-you for your support and encouragement. I find the physical symptoms more frustrating than anything else. It is what goes on in my head I find hard to deal with. I have found this forum a blessing. It is good  to know one is not alone in this.

 

Regards,

SB