Newly Diagnosed


#1

Hello,

This is my first post.

I am a 58 year old male living in London. Happily married with a supportive family.

Although this is my first post to this forum, it seems that since I was diagnosed with Parkinson's disease (early stage symptoms) just over two weeks ago I seem to have spent all my time telling friends and family, by phone, email and face-to-face. I have yet to tell work, but that should happen by the end of this week.

 Even now, after I have had a bit of time to get my head round the diagnosis, it all seems a bit unreal. Although I do have symptoms, they seem to be very mild.

The diagnosis was a bit of a relief at first because it explained a few things, such as why my walking had suddenly become a bit of a drag (literally), and why brushing my teeth had become uncordinated. I have read that initial relief can be a common reaction. However it’s all now starting to sink in, especially as I have just started on my first drug – Rasagiline.

I have pain in two different areas, and wonder if other people recognize them as symptoms of PD? One is a pain that seems to sometimes encircle my biceps, and sometimes to be in the middle of them. It started as a pain in my left arm, which I only really felt when moving my arm to a specific position, such as moving it back to put on a coat. In addition, I am feeling a similar pain now in my right arm.

Also, I have a dull pain in the middle of my chest. I don’t think it is cardiac. It is intermittent and I have put it down to a stressful job.

Positive attitude.  Keep fit.  Eat healthily.

Any more advice would be very welcome.

VJ


#2

Hi VJ and welcome to the forum.

I'm sorry to hear about your diagnosis. You have already understood the main points of advice for a new PwP (Positive attitude, Keep fit, Eat healthily, Have a supportive family, join the forum) so you are well ahead of many of us.

Parkinson's can affect people in different ways. It can be quite slow progressing so your symptoms may continue to be mild for quite a while, particularly if and when you start using some of the other meds.

A few thoughts on things you might like to do

  • If you are in the UK and if you drive then tell the DVLA and your insurance company about your diagnosis. Insurance premiums should be unaffected and you will likely get a new licence valid for 3 years.
     
  • Check if you have critical illness cover. (I found that I had a policy on a mortgage that I had been unaware of and nearly didn't claim...)
     
  • Find out if you have a Parkinson's Nurse Specialist in your area. It can be easier to get in touch with them than Neurologists and in many cases they can give more complete & rounded advice.

It's hard to say if the pains you are feeling are Parkinson's related. I've experienced arm pains a bit like the ones you describe. I have heard others describe the chest sensations but I have not experienced them. 

I hope that helps. Whatever you do keep visiting the forum. There are people here who have direct experience of everything that Parkinson's can throw at you

I hope that helps

Elegant Fowl

(p.s.  were you diagnosed on 15th August? )

 


#3

Thank you for your reply elegant fowl,

The advice is very useful, and some of it I have been advised of already, such as letting the DVLA know. I hadn't thought of critical illness cover, but don't think I have it. Pity!

So far I am feeling my way in unchartered territory, which I know is the same for everybody, but it is useful to know there is a lot of knowledge and experience on this forum. So far I feel lucky that my symptoms are not very pronounced.

How did you know the date of my diagnosis?

 

VJ


#4

15th August is VJ day...........  (and you said it was about a couple of weeks ago)

EF


#5

Another welcome to the forum, VJ --

The mildness of your symptoms and your noticing them so early are good signs.  Rasagiline slows the progress of PD for some patients, so I think it's a good idea to start it soon after diagnosis, as you have done.  My case of PD is probably in its 17th or 18th year now, and I still have subtle symptoms that are not even noticeable to the average person.  Whether taking Rasagiline for the past 10 years or so has delayed the advancement of PD I may never know.  But because my case has barely progressed at all, I am not about to try dropping it from my regimen to find out!  I take multiple medications now, with virtually no side effects.

I cannot comment on the arm pains.  The only pain I have experienced has been in joints, and I'm not certain PD is responsible.  Age and arthritis are possible culprits as well.

I have been particularly fortunate, though, and wish you the same luck.  You sound capable, bright and optimistic -- promising qualities.  To have reached a point of optimism so early is especially rare; you may evade completely the depression many PD patients suffer.  I was shocked, then depressed about a week after my diagnosis.  Since then, I have been as happy and active as before.

Best regards,


#6

EF,

VJ Day clinched it, you got the date spot on!

 

J,

Thank you for your comments.  It's very encouraging to hear of your experience, and I am pleased that your symptoms haven't been too severe.

At the moment, for me, it's all a bit new and unreal, and I am waiting for the positive attitude to dissipate, but so far so good. Because my symptoms are currently mild it must make it easy to be more positive, although I have had a few low moments when waking up in the early hours. But I guess if I didn't worry about PD I would find something else to worry about.

My consultant expects to start me on a Levedopa in three months or so, and my reaction to the drug will give a better idea of prognosis. The immediate problem is that I work in a stressful job, and not sure yet what can be done. I have just told them about the diagnosis.  The stress element is really frustrating, because I don't want to give my job up just yet, but everything I have read says avoid stress as a priority.

I have to say that apart from the arm pain, my shoulders joints are sore too, but as you say, it could be something else. However, I think that would be too much of a coincidence, and the pain has the effect of making my arm movements stiff. Hopefully if it is the PD, the Levedopa might help!

 

VJ


#7

Hi im 43 years old . I got diagnosed with parkinsons in march this year. I feel my symptoms are really hard to deal with . Everyday i walk slow no pain just cant move my legs. I have involuntary movement in my left leg really bad , also in my right leg and left arm but not as bad as left leg . My left arm burns inside but if i put it up in the air the burning stops . My husband says even when im asleep snoring the mattress bounces .           I dont feel im on the correct medicine . Im sorry for telling you this is my first time on this forum only heard about it today . Dont even know how to use it properly yet .you are the first ive contacted xxx


#8

is there anyone on here now i can talk to and get help to use this forum 


#9

Hi swampduck, welcome to the forum.

Our forum help pages may be useful for you - they're also available through the menu on the left-hand side of the forum. Although you may find the best thing is to take a look around the forum and try things out. As you've already replied to a couple of posts it looks as if you're making a good start.

As you will have seen there are plenty of people on here who you can share experiences with, so I hope you find the forum useful.

Best wishes

Sharon

 

 


#10

Hello swampduck I am new to the forum too . I have been waiting for a diagnosis as I had a dat scan four weeks ago . I found out on tues that I have pd so the last couple of days have been pretty awful . I was hoping I didn't have it that there might be a slim chance but deep down I knew really . I have a lot of the classic symptoms . I work full time and went into work Wednesday . I was actually better off at work I think than at home really dwelling on things . I have a problem walking too . My right leg won't move as well and it hurts at times . My foot is swollen . What medication are you on ? They have started me on azilect once daily . They said it will take about Six weeks but should help symptoms . I am really trying to be positive and keep smiling . Not easy at times is it ? I am the same age as you - well 45 ! This forum has been a great help to me over the last few weeks . I hope it is for you too x


#11

Hi Swampduck,

Your post has appeared on this forum, so you must be doing something right!

I am newly diagnosed too, and also new to this forum and website, so not really in a position to offer any useful advice.

The burning in your arms sounds similar to the pain in my arms, although moving them up and down doesn't make a difference for me, but they hurt when I move them back to put a jacket on or when I try to swim. It's a bit of blow not being able to swim. I am hoping that the next course of drugs will help, and I would suggest that if you have doubts about your drugs you should speak to your doctor or nurse. From what  I have read here there is a bit of trial and error in getting the right ones. But there are people on this forum who have a lot of experience of that.

As for snoring....it gives my wife many sleepless nights. I find nasal strips help. A bit expensive, but you can get them cheaper on Amazon. Breathe Right appear to be good, the others don't stick very well.

 

VJ


#12

Hi Swampduck and VJ,

My PD diagnosis was a year ago. I delayed taking medication for 5 months as I was scared witless of the reported side-effects. What a mistake that was! Advice from an excellent PD nurse got me started on Requip XL. My symptoms have improved, less rigidity, not so slow and it seems to have taken the edge off the shakes too. Handwriting has improved. I've kept positive - don't mourn a lost future. No one knows what the future holds for them, so don't waste your good times worrying about what might be. Exercise is vital, balance, strength and flexibility all help to improve mood. Positivity is soooo important!

 


#13

Hi Maddison,

Like you I couldn't really believe the diagnosis, but knew in myself it was correct as it explained various things. My right leg has been dragging when I walk and I have a tendency not to swing my right arm. I also experience minor twitchings in the muscles of my legs and to a lesser extent in my arms. They don't make my limbs move, but are more like a strong 'pinging' sensation. Not painful. It comes on mainly at night, but also during the day if I am stressed. I haven't seen this symptom described elsewhere, but assume that it is the start of something that will get stronger.

I have been prescribed azilect too, although I was told that its main benefit is to delay the onset of the next stages of pd, and the drugs that will help the symptoms most will be prescribed in a couple of months or so.

I agree with your view, keep positive and keep smiling.

 

VJ


#14

Hello VJ sorry for late response have been away for weekend . Hope you are feeling ok . My symptoms are very similar to yours . My right side is generally weaker . I have problems with right arm like you when I put a jacket on . That was probably my first symptom and was really painful . I could not sleep on that side . However that is much improved now nothing like it was - strange . My main problem now is walking right foot drags and I have to think about it or I think I'd trip . My right hand is stiff and I do have tremor but varies some days not so bad . The twitchings you have in your legs and arms I have in the right side too and sometimes it's like a spasm . Like yourself worse when stressed . Work can be stressful for me and I work for myself . I want to carry on working for as long as possible . I love my job . I use my hands so much at work but this maybe isn't a bad thing perhaps it will help . My handwriting is also a problem . Again sometimes it's better than others .  Has not been an easy week . I told my children today . Have just taken dog for walk plan to go on longer walks with him and gonna join an exercise class with my friend .like you I have a supportive family and some great friends so feel lucky in that respect . My husband although he has been upset is a very positive person in general . We can't let it get the better of us VJ . We've got to try and fight the things that are sent to try us . Onwards and upwards x


#15

Hi Maddison,

Good to hear that you have a supportive family, I think that will be important.

You mentioned telling your children. That must have been very difficult! It was difficult telling my children, and they were naturally upset. I tried to appear positive and rational, and that helped them do the same, up to a point.

You also mentioned fighting pd, and I agree. But I think as it progresses the question will be how to fight it? Everyone says keep positive. I am reading Michael J Fox's book, and he says after being diagnosed he was forced to make a life decision "adopt a siege mentality - or embark upon a journey". He said he took the second route and has never regretted it.

I imagine there are lots of people on this forum who have tried both routes.

VJ


#16

Hi VJ,

Just to say I was diagnosed about two years ago aged 55.  It took sometime for experts to determine Parkinsons.  I had to go through rotator cluff tear, possible brain tutor, motor neurone  before I took myself off privately and was diagnosed almost immediately.  It was ten months since my first symptoms I was relieved to know what it was, and have been relieved ever since for some reason.  LIke you my symptoms are mild.  I do have constant ache from a rather stiff hand and no arm swing (why does anyone know?)  I have had other symptoms which have come and gone over months - all rather odd.  I think Parkinsons is very individual and difficult to compare with others.  I am only on Rasagiline and do not think I have got worse since.

I too have a very stressful job, but the only thing that really affects my condition is anxiety - which in my case is a different emotion from stress.  I cannot watch films which make me apprehensive, hate arguments as I start to get very wobbly.

Unlike you, I have been in no hurry to tell people.  Told my family, which was incredibly difficult, and  have told only close friends.  Work found out when they insisted on seeing appointment card for PD Nurse, but it has been kept confidential.  Personally I think people 'watch you' when they know, and I don't particularly like that.

 

 

 


#17

Hi beacon I was interested to see your post yesterday . I was only thinking I wonder if there's anyone out there who has just been on rasagiline and been coping ok for some time . I have been taking them for just over a week . The pd nurse said will take six weeks to take effect . How long after did you see a difference ? Like you I had symptoms for some time about four years I think . Only referred to neurologist in march after I saw orthopaedic surgeon . He said he thought it was neurological problem as I had weakness one side and problems with right leg foot and walking . This was a newish symptom - few months . It has been a big shock . I was led to believe I needed op on shoulder never thought it could be this . I am 45 . I thought it was something that affected the elderly like many people. It has been a really tough week as there has been something else happen in the family too . I have gone to work each day and I'm sure that was the best thing to do as it has been a distraction . I agree with your comment about people 'watching you ' and I won't be telling everyone . I want to carry on as normally as possible for as long as I can . I know people mean well but I don't want to be constantly talking about it to everyone and being asked how I am how's the treatment going and so on . I have told family my close friends and two people at work . Oh and my dog ! Who's more than happy to go on some extra long walks ! I am really pleased you are doing well on the rasagiline . 


#18

Hi Everyone

Just been reading through some of the comments on this thread , i was diagnosed with pd last year at 47 yrs old i had been going back and forth to my gp wiht various things a tremor which started in my left hand about 5 yrs ago was put down to anaemia then i started having trouble getting out of bed and out of  a chair stiff and achy and then my tremor started getting worse and i had a a painful left shoulder went back to my gp who referred me to a neurologist  i my gp had said she thought it was something neurological she thought it was essential tremor but was not convinced as i had a resting tremor  so i came home and googled my symptoms dr google kept saying parkinsons  i was not unduly worried because i thought i was to young for parkinsons but it was in the back of my mind when i went to see the neurologist who confirmed pd  a few weeks after my diagnosis my mother was also diagnosed with parkinsons so i had to tell my children that there mother and grandmother had the condition that was a very difficult thing to do , my neurologist  has offered genetic tests which i think my children are  keen to under go so was a very difficult time indeed

I was started on Azilect straight away but i found it did not give me much relief from my symptoms so when i went back to see my neurologist 3 months later i went onto Levodopa ( Madopar ) which i now take 125mg 5 times a day  with good results


#19

hi dont know if anyone can answer this. why are some started on azilect and some on requip xl?

ive been started on requipxl 2mg to increase by 2mg weekly if no side effects to 10mg . does it depend on symptoms? can understand why if one doesnt suit try another , but why the different drug to begin with?   


#20

Hi, everyone --    I've been off-line for two weeks while on a trip to eastern Canada, so I'm catching up today by reading dozens of posts.

Kittens3, I cannot answer your question very well, but I have always assumed that the decision on a first medication is based on the combination of symptoms the patient has and on the doctor's familiarity with the results seen from various medications.  For me, Azilect (rasagiline) had no noticeable results at all in regard to visible symptoms.  But my case of PD is moving so very slowly that it may be delaying the disease.  Mirapex (pramipexole), contrarily, was like a miracle drug for me:  it reversed all my symptoms! Within two weeks I felt like my former self.  Over the years, however, the symptoms have returned and have required more medications.  And. like Shelly, I have had a favourable response to levodopa. I am still on a small dose of that, which gives me the cheering feeling that I have not yet used up all my options.

J