Scared


#1

just been told specialist is going to treat me for parkinsons , feeling confused and to say the least fed up , 49 this sat and this is my present 


#2

 


It's my birthday too on saturday woo hoo and i'll be 46, it could be worse.


#3

Hi slider955i,

Being diagnosed with Parkinson's can be an emotional time, and it is understandable to feel scared and confused. Please do remember that you can call our free and confidential Helpline on 0808 800 0303 to talk things through with an adviser and find out what support is available. You can reach us on Monday-Friday: 9am-7pm, and Saturday: 10am-2pm.
 

Best wishes,

Joanne

(Digital team)


#4

slider955i....take it steady, do your best and enjoy saturday ,this can wait until next week and more importantly when you speak to a specialist  ,it seems you might need a bit more information .. theirs plenty of help from people in the same boat , so to speak , so dont be scared ... ps you must be getting old im not 49 untill the summer ha ..chin up


#5

 I have been  care-partnering  my wife , almost for 17 years, one thing I am certain of is that at this time you    should not be scared as young onset Parkinson's (what we in the States would label your Dx at your age) is treatable and one must not try to feel depressed or confused ,as once you are on the correct mix of medicines you will feel better.

It is important to stay active and exercise , if you are in a locale where there is a PD support group perhaps you may be able to attend and hear of other patients at various stages of this disease as to how they cope as well as how to help loved ones care for you. 

My wife can drive an auto perfectly ,she can walk well but with a rollator/walker which helps her from falling she remains very careful to do her prescribed exercises . She was diagnosed at age 53.

Some time ago at a great medical center in New York City a distinguished Neurologist lecturing to us asked of his audience "How many of you came here by yourself " 99% of the audience raised there hands.

The Physician lecturing us then said" If you are ever down about your disease kindly just remember this ,when I was first treating Parkinson's in the late 1950's and early 1960's you would have been unable to come here and most likely be a shut in 24/7 at home with almost no ability to do much by yourself, let alone travel to this hospital to have heard a lecture ".

 

 

 

 

 

 


#6

got a 4 month run on tablets next to see how my body responds 


#7

Wishing you luck with your pills regiment, give it some time to adjust to the medicine that best works for you Parkinson symptoms ,vary with each patient and so do the treatment protocols .

My wife before she started her medicines could not button up her blouse or tie her shoes without help and within a few weeks on her medicine ,she was able to live life normally for many years.


#8

You can be scared if you want but yor never alone am 55 with pd aprox3 year diagnosed 1 year you will live a long time yet spare a thought for cancer ect they don't have the time you will so toughen up be happy enjoy your life good luck


#9

Hi PD Carepartner NYC, 


Comforting words! This was the very first post i read once registering on this forum, i have always felt grateful for being able to cope with what i have but its nice to be reassured by a voice other than your own, and yes life could be so much worse.


#10

That's is better if your busy and happy as you can be I find is the best and don't rush anything nice to hear from you


#11

In our PD support groups which include patients, from recent diagnosis to those harbouring their disease for  20 + years duration ,the one key denominator of staying above the symptoms of PD is staying active and doing as much exercise as possible , I do have an uneducated and unscientific opinion that those folks diagnosed as you were before age 55 do better because of earlier treatment & interventions.

After 16 years my wife may have difficulty walking or falling issues but her ability to drive a car safely is quite flawless , I have heard in my caregivers groups many amazing physical abilities that do remain when issues of walking or freezing appear.

 Hydration is important however that remains a problem for some older patients , at least one hospital here is investigating the common cause of low blood pressure in PD and falling issues due to poor liquid intake.

These are things you do not yet to have to think about as PD is so different in many instances for each and every patient.  My wife and me do keep busy as we both are involved in the arts and I have never known an artist who retired..:-) 

Good luck!

 

 

 

 

 

 


#12

hi 

i knew there was something wrong and was dx with pd.Trouble was everything got worse cause i worried try and rub each ache and pin away lie life as best you can and moanto yourself not others cause basically they dont understand about pd.

be happy andd your body will be as strong as it can.

david


#13

Hi dave you can moan on this web site because most of us do understand some will be just like you so let rip and see if anyone has your problems good luck to you Ian 


#14
Fear can only bring you down guys and galls this is a fight and knowledge is power. Learning about your condition can only help this is how I fight mine. Everyday I look in the mirror I can see what my PD is doing to me so I tell her today b**** you will not win because the other b**** in side me will always win. Best wishes to all BB xx

#15

going for my check  up with specialist today at Worcester hospital 


#16

Hi slider....

                  good luck with your check up and hope all is positive. If you feel down you're always welcome to have a moan

Take care John


#17

hi slider i was dx at 47 am now 50 dont start to worry as that will make you worse stress is the worst thing for us.Regards BB