Sorry can you repeat that please ......


#1

I’m 42 years old I replied back to the consultant on Saturday 20th January 2018…Hi my name is Chantell from Manchester…I think im still in a kind of shock telling my husband and two sons I have just been told that I have parkinson’s Disease didn’t seem real, stood in the kitchen of our new home this weekend. I set off to my appointment at Salford Royal Hospital alone on Saturday I said to my husband it’s absolutely fine you don’t have to come take Cameron our youngest son to football I will meet you back here after I have been to my appointment then shopping. …little did I know …so what happens next???I could see the consultant talking but I could not hear him my head was spinning. … Please tell me what I need to do if anything do I have to call my doctor for a prescription? ? Thank you


#2

Hi Chantell,

I’m sure some of the other members of the community will have had similar experiences during diagnosis. Please remember that you are not alone through this, as well as our community here, we have a lot of information on the website for people who are newly diagnosed which you might find helpful here.

Give us a call for free on 0808 800 0303 and we’ll answer any questions you have.

Best wishes,

Tom


#3

Hello Chantell,

First of all I understand your feelings on being diagnosed. Mine was in 2010. I think your consultant will be writing to your GP but I would suggest you make an appointment as soon as possible. And take your husband with you. I have always gone with my wife when she has had serious things to talk about, and she comes with me. As you say, when you get this sort of news you close down so it is important to have someone with you to take it all in.

If your GP doesn’t mention the Parkinson’s Nurse Specialist to you then ask him. The Nurse will be readily available to you by phone or visit if needed and the are he/she will be very supportive.

Nobody wants this diagnosis but take heart that there are lots of people out there who work to help and support you.

Take care.

Bepo.


#4

Sorry about typo in second to last para. Should have read it before posting.


#5

Hi Chantell

I was diagnosed exactly a month before you and also went to see consultant on my own.

The consultant wrote to my GP and also the Parkinson’s nurses. In the meantime I found the number for the nurses in Leeds and rang them. The nurse I spoke to was lovely and she reassured me about support available. She also got me an appointment to see another of the PD nurses within a week and she did an assessment and decided on medication. She then wrote to my GP with my prescription and I went to see him last week. I started medication 2 days ago. It is the nurse that prescribes the medication via the GP.

I also contacted the PD support worker for my area and a local neuro physio (the NHS physio has a 12 week waiting list). My consultant was very clear that exercise is a vital part of treatment along with medication.

This site/forum and another site called health unlocked have been great sources of information and support, just choose wisely what you read at this stage.

I hope you get some appointments sorted soon.

Jayne


#6

Thank you. …yes I will make an appointment x


#7

Thank you Jane I will have a look for my local nurse number I appreciate your reply xx


#8

Thank you xx


#9

You’re welcome. There’s a helpline on this site as well so if you really need to speak to someone for advice or support give them a ring.

Just talking to someone can be a big help…

Take care xx


#10

Hi Chantell, your diagnosis day does sound similar to my day. In fact I was diagnosed close by at the Alexandra in Cheadle. I was fortunate enough to have private health insurance but the neurologist that diagnosed me also worked at Salford Royal. He was probably the same guy, about as subtle as a brick. However I dont suppose you can sugar coat these things so its better to just say it as it is. The first few months are tough to come to terms with but with the help of the great people on this forum you will be fine. I wrote a blog on here of my diagnosis day titled “My Parkinsons’s Journey Blog 1”. I am sure it will bare similarities to your day.

Ian


#11

Hi Chantell

Just checking in to see how you are…hope you have managed to speak to someone about appointments.

Jayne xx


#12

Fabulous reading…let me guess Dr … … sounds lovely if he was a pizza???


#13

Hi Jayne not sure if you got my reply yesterday. …I’m waiting for the Nurse to call me back I did speak to the support team. …well cried and spoke all at the same time…feeling much better today not a single tear. Hope you are well and having a great day, I’m going back to work on Monday x


#14

Hi Chantell

No didn’t get your reply yesterday, but got this one now!

I cried buckets for the first week but then decided I need to get a grip, be positive and listen to the advice from the nurse and support worker.

I’m off work still and they’ve told me not to go back until my meds have started to work. I’m lucky that I get sick pay for months. Although having said that I’m bored to tears at home. I’m about to move house though so trying to make use of the time sorting that out.

Good luck with work on Monday

Jayne x


#15

Im rubbish how to post or reply on these forums ha ha ha yes plus typing on my phone is rubbish with an annoying tremor. I have sick entitlement I work for a fantastic company im bored at home crying to myself ha ha ha… Are you local to Manchester I’m in Worsley xx


#16

Hi Chantell

I have trouble holding the phone still too so could be typing any old rubbish haha.

I work for the NHS and they’ve been brilliant, but my job is really stressful so I’m not going back for another few weeks yet. In the mean time they are looking at adjustments to my role or I might even move to another department.

I’m not a million miles away, the other side of the hills in Leeds x


#17

Hi Jayne. …I was just telling my best friend how sweet you have been checking on me even though you are still in shock too…I work for RAC…my new boss has been great…Leeds is not far away at all you could be my new buddy xx the support group are looking for a group for me to attend the local one closed down. .apparently a young persons group meet end of the month…have you been to a group yet…xx


#18

Hi Chantell

I’m just glad I could do something in some small way to make you feel.like you’re not on your own. Most of my friends, family and colleagues have been very supportive but there are some I’ve not heard from in over a month. I’ve had some lovely messages from people on here too.

I’ll happily be your new buddy and we can go to a group together, I was pleasantly surprised when the support worker called me young, that’s not something I hear often haha. I haven’t been to a group yet as I don’t think the one in Leeds is very active although there is one in Wakefield that seems to be and that’s not too far away from me. The support worker gave me loads of information too including details of physio and alternative therapies.

Xx


#19

Hi Chantell

I was given details by the PUK support worker from this site. You can search for the support group for your area and just give them a ring. Failing that search for neuro physios in your area and when you ring them ask if they deal specifically with Parkinson’s… the one I’m going to does various therapies including PD warrior, Parkinson’s movement, lsvt and something else that I can’t remember. They should do an assessment and then give you a tailored exercise routine and if you’re lucky they might have classes.

How are you feeling and did you go back to work

Jayne xx


#20

Hi I went back to work on Monday then started meds wednesday morning. …by mid morning they sent me home I was spaced out. …and today well I have told you ha ha ha ha ha ha high as a kite…xx