New and confused


#1

Hello all,

I have been in the system for the last year or so, my GP refer me to the memory clinic due to ongoing problems I had been having trouble learning lines for plays and Pantomime or lyrics for songs. This had never been a problem for me until around 18 months ago

Taking all of the cognitive tests and the like my consultant said she said I had early Lewy bodies dementia! Because of my age (53) she was referring again, this time to a professor.

Scan after scan, slept monitoring and more pushing, prodding and a thousand questions I received a letter.  My DAT scan showed changes in keeping with Parkinsonism Syndrome.  So who knew!

Last Wednesday my GP started me on Clonazepam as suggested by the professor to help, with my REM (RBD) and informed me to tell DVLA.  I now have to wait to see my professor sometime next year and from the DVLA.  I am not looking forward to that as I hold my HGV class 1 licence.  My GP said to come back and see him if I feel I need to! 

Is this how it is/has been with everyone? My wife is beside herself, bless her. I am just getting on with things, no time to slow down and worry about this right now, as they say the show must go on.  Even though I understand life may never be the same again. 

Sorry to go on, thanks for taking the time to read my ramblings.  I feel better already. 

Keith


#2

Hello keith

its so hard when finally diagnosed. So many different thoughts go through your mind. I was diagnosed after a dat scan. I see a PD nurse every so often but she's always at the end of the phone if need be. The consultant I don't see as often. You mentioned the GP. I get my PD meds from him on repeat as prescribed by the nurse or consultant. It's a year this month for me. Things are steady and I am just trying to go with the flow. It's still early days. The forum help line is always there to ring too for advice. And everyone on the forum is friendly and helpful.

i really wish you all the best and I'm sure things will gradually fall into place for you. Having help and support from family and friends helps too. Take care, sue


#3

Hi Keith 

  Welcome to the forum was dx with Parkinsons myself two years ago then Lewy body dementia in June last year I'm 59 now so also considered young onset , was an hgv mechanic until my memory and shaking hands put an end to that, don't know how you will fair with the dvla as in my case they took my hgv Entitelments and gave me a 3 year license, they left my bike licence but my sense of balance is shot so can't ride anymore. Hope you have better luck than I did.

  Well take care and live well.  Cc


#4

Thank you Sue, 

I know things will settle down there is just so much to take in. I expect I will be give a PD nurse at my next consultant visit.  I think I will be a regular online. 

Keith


#5

Hi cc,

Thanks for the welcome.

I am pleased that I may keep my bike licence. Can I ask did the DVLA restrict you to 3500kg? I own a motorhome  that is 4250kg so will need to be reviewed if this is the case. I don't currently rely on my HGV for my living, I do need a car though as I commute 80 miles a day.  

Keith


#6

Keith, I'm sure they will sort your PD nurse out and that will give you then an opportunity to ask anything you want to ask. I try not to look too far ahead and just try and deal with how I am at the moment. My hubby, family and friends have been a good support.  Talking on here is definately a help. Folk have been very kind and helped answer some of my questions too. Take a day at a time. 

All the best, sue


#7

 

 

Hi Kieth - welcome to the forum where we will try and keep you sane (not all of us are, chuckle) Go ahead and  ask any question you like, or just talk about anything or have a rant if you feel like it, we might not answer but we will have a read!

If you go online you may even find a local parkinsons group nearby in your area, or phone the helpline to see if they can trace one for you, these groups can help a lot in how you feel  about yourself. It takes a lot to accept you have parkinsons, I've had it for seven years now, was actually DX at the age of 57 and just really started to accept it, and try to live life the full!

All the best - Sheila


#8

Hi Keith 

  Yep can only drive up to 3500kg but you may be different as there are some who keep all there licenses, what bike you got? With the help of some friends I'm building a 1100 v4 Honda trike,

   Live well. Cc


#9

Hi Keith my hubby is 45 and diagnosed with PD 2 years ago, do not despair he is HGV driver and he has kept his licence, he has to have extensive medical (as you should) and they asked his specialist for a report, I know that you should not have to but could you afford to pay to see your professor, I say this because I think that if the DVLA had relied on my hubby's GP I am unsure whether the outcome would be the same because they obviously aren't specialists in the area of PD

and by the way as a wife I was really upset and worried but 2 years on I still have times when I feel beside myself but they are getting fewer, I think the only way that you can deal with this dreadful disease is one day at a time.

Thanks Klou


#10

Thanks again CC, might  have a look for a different motorhome over the winter and try to get  a deal.  I ride a Bk1200LT, I don't  use it enough but I would hate  not to have it in the garage.   

Keith


#11
Hi, just reading all posts and going through all similar feelings. I was diagnosed in May this year but with symptoms for maybe 2 years. I'm taking one day at a time. I've got a good consultant and a great PD nurse. I feel lucky as I am realising not everyone has access to one. Keeping fit and healthy is my main motivation to getting to grips with this condition. Keeping a positive attitude is definitely helping but allowing myself to be upset is good also. It's early days for me but I'll keep trying to do my best. At 51 with 3 teenage sons I've got plenty to keep me going! DivineR

#12

 

 

Hi DivineR - your handling the diagnosis in the right way, just keeping staying positive and you'll be ok. It's ok to have a down side every so often as well, it helps with coming to terms with the diagnosis also. I was diagnosed at 57 and have had it nearly 7 years, even now I still have to pinch myself and wonder if it's true!

All the best - Sheila


#13
Thx Sheila, I try to be positive most of the time. Like you I still and probably will have times when I don't believe this is my reality. But what can you do except to keep going? A healthy dose of humour helps as well. Sometimes you have to laugh. (Good for the throat muscles, I believe ). DivineR