Diagnosed at 32 but determined to stay positive


#1

Hi everyone, my name is Martin, I'm 32 years old and was diagnosed with Parkinsons just last week. 2014 was something of a life defining year for me, as I also was married to my beautiful wife in April last year and also bought a new house. My story seems to be familiar to many of you, I initially experienced a right handed tremor towards the start of 2014, in fact to begin with it was barely a tremor at all, more of a slight twitch I noticed when trying to pick up a 20p piece from my bedside or when attempting to eat popcorn at the cinema. I visited a neurologist back in June for the first time and had an MRI, nerve tests (which I've since learned is a test for MND) and blood tests. When all of those came back clear, I was referred for a DAT scan in December which sadly came back showing reduced dopimine in the left hand side of my brain. Since Parkinsons was first mentioned as a possible prognosis back in November, my symptoms went into over-drive, I think that stress definitely plays a part in magnifying the effect of the condition. Now that I have come to accept the diagnosis, they have reduced back to what I was previously experiencing.

I am absolutely determined to not let this beat me. This website has been tremendously informative and has given me real hope and support. As things stand I am on no medication at all, I accept that in time this will become a necessity but whilst I can manage without then I will. My initial fears about being banned from driving, having to medically retire with immediate effect have been eased by reading the personal stories section and I suppose that I am lucky in some respects that I am not in a manual job so should be able to continue working as normal unless my condition significantly worsens. A positive outlook coupled with some excercise would definitely seem to have a positive effect on the condition, so I will definitely be trying to get regular excercise.

I am also determined to throw myself into raising money and awareness to hopefully progress towards better treatments and a cure. I am optimistic that this condition will be cured by medical science within the forseeable future and tremendous progress appears to be being made on a yearly basis. Until then let's do all we can to support one another on both the bad days and the good.

 

 


#2

Good evening Martin

Welcome  to the forum

You will find plenty of support on the forum from both the members and also the puk helkpline

The usual scenario from DVLA is they send a questionairre out to your neurologist and he fills it in and sends it back if you are in the relatively early stages of pd the the usual course of action is to issue a 3 year licence

I was diagnosed in August 2013 at 47 yrs old

Keeping positive and accepting there will be good days and bad days are the key

Best wishes Martin


#3

I also welcome you, Martin!

You have it all figured out already -- amazing!  Optimism (good for brain chemistry) and exercise are the best contributions you can make to your own condition.  Like you, I did without medication for quite a while.  You'll know when it's time to start taking meds:  when your symptoms interfere with your normal living.

One suggestion I might make, though, is that you investigate any meds purportedly delaying the advancement of PD.  One of those might be appropriate immediately.  My own case has been extremely slow-moving, for after 18 years I am still in the first stage of the disease, and people never guess that I have it.  I think taking Azilect (rasagiline) from the time it came on the market in the U.S. may have had a delaying effect.  But, of course, all our cases behave differently; it's an unpredictable ailment to a great extent.

I can tell from your post that you're already on the right road!  Best wishes for easy travel!


#4

Welcome to the forum Martin,

I was diagnosed last year when I was 33, so a similar age to you. I can totally relate to symptoms going into overdrive when I was warned what it might be! I've found this forum very supportive.

I'm on 1mg Azilect a day, which I think has had a very small effect, but will hopefully help in the long term. I'm back to the neuro at the end of this month, and will be interested to see if they put me on anything else.

So glad to hear your positivity - this is my outlook too - and I find that excerise is definately a winner!

Best wishes,

T


#5

Thanks for the feedback everyone, I accept there will be times when staying positive will be harder than others, there have been times where I've felt that fate was mocking me, particularly when a new start in my team at work had the surname 'Parkinson' and Taylor Swifts 'Shake it off' constantly being on the radio.

I'll definitely email my neurologist to ask about Azilect. Can I ask what everyone's experience is of Levodopa? I assume from what I've read that it is very much down to individual reaction?


#6

hi Martin - tis good for all of us to hear such positivity.

Levodopa is the main drug of choice for treating the symptoms of PD - old, but tried and tested. I'm not sure it's that much down to individual reaction, certainly not more so than PD is individual anyway. But it does tend to lose effectiveness after some years (what this means is contested - look for the Q & A session on drugs) so there may be reluctance to prescribe it just yet.

I belong to the school of thought that says gimmie the drugs - you need to be able to function *now*, and worry about tomorrow when it comes. You need to be able to do all you have to, and a good proportion of what you want to. That said, the lowest dosages that get you to that point is what you should aim at.

However, I'm not a doctor and all the above is just personal opinion.

Take care

Semele

 


#7

Hello again --   I agree completely with Semele.  Because I was afraid of dyskinesia, I delayed taking Levadopa until my symptoms seemed to call for it.  It was so effective so quickly, though, on just a small dose that I stopped worrying about side effects.  I think the general rule is to take what you need to live your normal life.  When one drug or combination of drugs doesn't work, there are many others to try.

Best regards!

J


#8
Hi all I'm trying to set up a meet and greet in Manchester in April round Parkinsons Awareness week for ypwp. There is no group for people with Parkinson's whom are younger in the Manchester borough. I'm 38 diagnosed 2 years ago, and would love to chat with fellow parky people. It will be a great opportunity to discuss, exchange stories ask each advice on anything and everything. Last of all we might make this a regular meet up, which hopefully will be a fun relaxed gathering. Would this be something you'd be interested in? Zoƫ

#9

Hello everyone, my husband is now 59 and has been diagnosed since October 2011. Is there anyone out there on 3x 250mg daily of madopar? We would like to hear from anyone who  has increased their dose from 3 times a day to 4 times..We are now trying to decide whether my husband should take the 4x 250mg or stay with the 3x 250mg a day and add another drug to increase the effectiveness of the madopar. i haven't noticed many posts from people who rely just on the madopar at a higher dose. It has been an effective medication and still is, but as time moves on he needs a slight adjustment in his meds. Its good to hear other members experiences so we are able to make an informed decision when we discuss this with his consultant and hear the options.


#10

Hi Merlin,

   I was diagnosed in May 2012 at the age of 71 but definitely had pd symptons for at least a couple of years before diagnosis.I am now on 187.5 madopar 4 times a day at 7,11,3,and 7.I also take two 125 controlled release at bedtime.I also take selegeline,now on 5mg  this was reduced from 10mg to see if it would help with sleep.I have no tremor,hope this information helps. 

                          Anne

 

  


#11

 

 

 

 

 

 

 

 

Hello Anne,

Thank you for your reply, your information has helped in our discussion about the way forward re dosage and timings. As we know, everyone is different but just having examples of what other people are doing is a real help.Can i just ask if you get any dyskenesia? My husband gets some during his peak dose in the morning and a little at other times.It isn't a real problem at the moment, although it can be annoying for him, but we are well aware it might become an issue if his dosage is increased. He has never really experienced tremors which goes to show everyone is different. Will research Selegeline as an option too.

Thanks again

Merlin

 

 

 

 

 

 

 


#12

Hi Martinhmfc,

Good to hear you are on a positive wavelength. I was dx in June 2012 with stage two PD, after eighteen months I am now mid stage at 2.5. I have taken pramipexole since day 1 of my dx and the madopar started a few months later at 62.5 mg per tablet three times a day. I am now on five times 700 mg pramipexole per day and madopar 62.5 mg per tablet six times per day. This is along side blood pressure tablets, vertigo & tinnitus  medications I have developed nerve end pain since my dx could be due to the PD or a mix of all the meds' I'm taking but there is no way of knowing really as PD is so individual due to our own DNA. I notice a difference on the first day of starting on the meds' after taking a 0.088 microgram tablet i am with Semele in the gimmie the drugs school of thought, the symptoms you are having at the moment can only get worse and at what speed no can predict. However your positive train of thought can only help with what can become a b**** of a condition depending on how it's progression happens.I wish you the very best of luck with how you choose to handle your PD if you ever need a helping hand all of us on this forum we will be there for you. We have helped each other with so much that we are like a forum family with one thing in common the PD B****.

 

Kindest regards BB. 


#13

Hi Merlin

 So far I have not experienced dyskenesia,I realise i am on a fairly high dose of madopar,and if I do get dyskinesia,I shall have to reduce the dosage.Selegeline helps levodopa to work better,the neurologist I am now under said it is an older drug which is not used often where I live,he would have prescribed Rasageline but i could have had side effects with it as I am  on another drug for another health condition.

I have heard that if you do not have a tremor it is easier to treat Parkinsons ,perhaps there is no truth in this!!Best of luck with whatever you decide .Anne

 

 

 


#14

Hi Martin,

Would just like to say hello and welcome! I wrote my first post the other day and i accidently wrote on your thread! Although i was asking about Madopar i did notice that you are now asking about Levedopa.My husband has parkinsons and although he is quite capable of communicating i thought i would get going on the forum myself! ... When my husband saw my first post he said i should have asked about those on Levedopa which of course includes Madopar or Sinemet. Anyway i received a helpful post or two from Anne which i appreciated very much. Now back to the levedopa! My husband takes 3x 250 mg a day( madopar) and is just at the point of needing more or other meds with maybe a reduction in his madopar..When they add other drugs they seem to reduce the levedopa dosage too..He has been on the same dosage for 3ys 3 months.He has developed dyskensia ( still learning to spell!) Its not all bad because when the moving around calms down which lasts for about 1 to 1 and a half hours after each  tablet he has a relitively quiet period. It works well for him and makes him feel much better physically and mentally. The general rule is to have as much levedopa as you need but not more than you need, if that makes sense. Obviously, your Consultant will guide you. My husband is much older than you but he finds he still wants to be fairly active and the levedopa helps greatly.Good luck with your medication and as everyone else says everyone is different. I think its important to find out what other pd patients are on then you can research the possibilities  as you are doing already, asking your consultant about them.My husband has gone 3 years without needing an adjustment in his meds and now we are arming ourselves with all the info before we c the consultant very soon.

Merlin