Newbie saying hello


#1

Hello and hope you are all doing OK

Start of the journey for me, wife not yet officially diagnosed but symptoms, in my eyes, show that she definitely has early onset PD (mid 40's). Has had CT scan which showed nothing out of the ordinary and is waiting to see consultant in around  a months time. She is not a great user of the net hence me being here, also the lack of movement in her hands means typing is now difficult.

Symptoms are tremor, started in left side but now often both, stiffness left side, balance problems, left side limp, hands now very weak and slow, facial 'stillness' and increased tiredness. No longer drives as finds gear changes difficult and has reduced hours at work due to fatigue. Symptoms started with the left side stiffness/balance issues around a couple of years ago. She has other problems which have given her balance issues so we sort of didnt notice that other things were getting worse and put it down to her original problem. Increasing anxiety and depression led to a visit to the doc who pretty soon pointed us in the directions of a parkinsonian disorder.

So that's about it for now, looking for some positive vibes, wife thinks she will be 'back to normal' once she gets on medication, and I very much hope that is the case. But life is not looking so positive at the moment, I thank the lord for prozac :-)

Best wishes

 


#2

Hello Exile and welcome.


                                          sorry to hear that your wife is now one of us but we a friendly group and Im sure theres people out and about on the forum who will listen to your probs. I were dx in April this year so still a baby in terms of parkinsons but im sure you have read other peoples stories and come to one conclusion...parkinsons effects us all differently and unfortunately been put on drugs isnt the quick solution you and your wife may be looking for. Its all a matter of time and finding the right 'cocktail' suitable.

If you have any doubts contact the helpline they are helpful and can point you in the right direction.

Take care

John


#3

Thanks John, I did think we were being a little optimistic, I blame the doc, he was insistent that once on medication all would be well. I have tried to point out to her that the correct drug or dose may take some time before there is improvement but I havent pushed that too much, it is already enough to cope with the symptoms. But thanks for your welcome and wise words.


#4

Exile im sorry it isnt what you want to hear. The general opinion of many people is that gp's dont know enough about parkinsons and thats why they leave it to the nueros and parkinsons nurses. My own gp is of that opinion.


#5

No worries John.

I cant knock the doc as he has been very good trying to help, he has been in contact with various Parkinson specialists to try and speed the consultation and got the CT scan done as quickly as possible. Suppose we will just have to wait a month and hope that the consultant decides to try medication sooner rather than later. I wont say anything to the wife though, she is low enough as it is at the moment, despite the anti-depressants. Ho Hum


#6

The only thing I can say is my nuero explained everything to me and left it to me to decide if I thought it the right time to start meds. I chose to but the nature of medication Im on (ropinrole) its a steady build up and not a quick hit.

Good luck


#7

OK thanks. I am sure she requires meds as everything is now difficult for her, takes her 3 hours of a morning to be ready for work.

Thanks for the heads up that it wont be an immediate fix, I shall break that bit of news to her carefully.


#8

 

Hi Exile - sorry about the problems you and your wife are having trying to accept the diagnoses of PD. It does take a while trying to take it all in, but you will have doubts and anxieties as everyone has on the forum. I was diagnosed six years ago, I didn't accept meds for the first twelve months, but after that my body needed the medication to cope. Sounds as if your OH needs medication of some sort, and I'm sure the neurologist will prescribe what is best for her, sometimes it takes a short while to get accustomed to the meds. I am also on Ropinirole XL slow release, as is Smoggy, but I must tell you it does not suit everyone. There are a number of meds for PD, take a look on google for meds and their side effects.

I wish you well - Sheila


#9

Thank you Sheila I have had a look and the side effects look worrying, hopefully she wont have these.

I shall be back to ask questions very soon no doubt.


#10

 

Hi Exile - I have'nt had any side effects from my meds, for which I feel lucky, so I am reluctant to accept any changes in meds just in case I experience any effects from them. So I know how you both must feel, it's the not knowing of what will happen in the future. But we can't live like that, we have to make the most of what PD throws at us, and be strong and confident for each other.

All the best to you both - Sheila


#11

Thanks Sheila, yes the not knowing is most definitely bad. 


#12

Good Morning,


                         as Shiela said Im on the XL slow release and the only prob I had was GP prescribed the quick release and I were unaware as we always think the medically trained wont make mistakes. I took these for 10 weeks and it was causing what I can only describe as a headache from hell, an overdose of chemicals. Once this was sorted I have no probs with ropinirole XL.

And yes, it does take time to accept PD but we have no choice I see it now as a 'soulmate'

 


#13

OK slow release, check. Thanks

It's been a difficult few years and then this on top of everything has hit a bit hard.


#14

Diagnosis confirmed as PD, starting on dopamine agonist soon. Bugger


#15

Aye dinna worry you'll be fine welcome aboard 


#16

Hi Exile,

Sorry to hear the news about your wife's PD diagnosis. We've all had it a long time before symptoms reveal themselves.....maybe decades. It will take a while to sink in and accept and don't expect the DA's to kick in immediately. We all react differently to the meds., but eventually find something that suits us. Stress can make everything worse, so allow her time to adjust and be supportive.

I wish you well on this long journey......it won't be easy for either of you, but the forum is a good place to talk to others in the same situation and the Helpline is always an option. You sound a very caring husband anyway.

Twinks.


#17

Thanks, I shall be back with numerous questions in the not too distant future no doubt.


#18

Afternoon Exile, 

How are you both feeling? I'm sure it's been quite a stressful and challenging journey so far. As you can see the forum is a great source of support and you're not alone. 

Please let me know if there is anything I can do for you, I work on the digital team at Parkinson's UK. 

Take care

Kat 


#19

Thank you Kat and yes the forum has already helped a lot. Lovely people.

It is all a bit in the air at the moment as we are waiting for an appointment with doctor to start medication. Praying this will improve things soon, if not lord knows what we will do.

On top of everything else it has already effected us financially, wifes reduced hours at work resulting in a £400+ a month drop in income, not ideal.

Thanks for your kind words


#20

Hi Exile, 

No problem at all. I'm really sorry to hear about the financial difficulty on top of everything else, just what you need! If you need any advice on financial support as well as the medical side of things do call us. We have benefits advisers and Parkinson's nurses available on 0808 800 0303. 

Take care