Individuality

[isis6361]

This sticks in my head each and every day. I see probably see 40 people a week with Parkinson's from all classes cast and cultures but what dominates my clinics is young onset complex cases. Young as 18 with the average age of 55. Seeking advice reassurance and expert knowledge. But most of all understanding. Clinics are a place for me to listen . Anger frustration annoyance sad happy painful and confused. Such emotions from each individual I see. We share tears we share hugs, we seek a solution before the individual carries on into their every day life of living with parkinsons

[WayneP]

I feel you I must say. Being 48 myself and having all the feelings of loss, regret, anger, sorrow, thankfulness and confusion all in an hours time it seems and to start is interesting to say the least. If it not for a strong faith and family I would have fallen into the abyss some time ago. Yet I put on the brave face again today to fight the good fight.

Wayne

[Hidden]

I never knew they had clinics like that!

[Jocee]

Where do you attend these clinics? USA?

[PatV]

I have the same experience in my PD exercise classes -- joy, tears, frustration, or just relief at having an hour of fun without worry

[isis6361]

In the UK we have nurse lead clinics at least 3times a week and in my clinic we have young onset complex movement disorders. As part of the movement disorder service.

[froggatt55 in reply to isis6361]

Whereabouts are you isis6361. I'm in Sheffield and whilst we have a super back up service via the Sheffield branch we don't have clinics / classes three times a week

[isis6361 in reply to froggatt55]

We have 900 pwp and see them 3 to 6 monthly with evening clinics,

[froggatt55 in reply to isis6361]

Hi - I meant to add that we are holding a Strawberry Fayre in August to raise funds towards the exercise and voice classes

[srarndt]

These clinics sound wonderful ... what an excellent resource!

Steve (Bisbee, AZ)

[salon]

i just have to say i am so mad at this stupid disease for making me so different . i dont like this person i have become. i am so slow so invisible i have to make a scene to be noticed i hate the new me i wish i could wake up and be the old me and find out that nobody is affected by parkinsons us or our family

[isis6361 in reply to salon]

Where are you living as treatment and advice varies around the world

[quirkyme in reply to salon]

it's a real loss of self. My husband was diagnosed in 2007 and he's on a plateau, we keep telling each other. It's hard. The first years (?) he was grieving and sad, lost self-confidence and was anxious. I almost asked him to go on SSRIs (an anti-depressant) but held off for his natural resilience to kick in.

I'm sorry to say that this takes work, every day. Find some self-care, meditation, spirituality, or other books and/or CDs, find groups, link with others. It helps.

You are the same person inside. You are a person of dignity and worth. If people don't treat you as having dignity, leave the restaurant or group and go where people understand and treat you well. That makes it easier.

[JohnPepper]

Hi isis6361

I live in South Africa and we do not have any facilities like this. In certain cities, we have Support Groups, who are either patients and/or carers, and we try to help each other. It seems to me that you have it easy! As we do not have anything other than our doctors to rely on, we tend to be more self-sufficient. It costs an arm and both legs to go to our neurologists. If we go to the national hospitals, we have to be prepared to wait all day, before seeing a doctor. They only prescribe medication, for which we have to stand in line for another age.

As you might gather from my postings on other subjects in this forum, I have been able to overcome most of the movement problems, I was diagnosed in 1992 but my first symptom started in 1963.

I only took a monotherapy of Eldepryl, an MAO-b inhibitor, and I walked hard for one hour every second day. To start off with I walked for 5 miles (8 K's), but now, at the age of 78 I only walk 4 miles (6 K's).

I also got rid of all forms of harmful stress and developed a positive attitude towards my condition. I have been totally off any Pd medication since 2003.

John

[quirkyme in reply to JohnPepper]

that's terrible that you have so little medical help. I agree that we need a positive attitude.

[salon]

sorry i was so mad at pd yesterday i am ashamed of my behavior at times i am very blessed and fortunate to have wonderful caring friends . i will sit in time out

[quirkyme in reply to salon]

sometimes we just have to 'touch bottom' on how much misery we are in. It's okay. It's not selfish and it's not self-centered. It's hard. Please don't sentence yourself to 'time out.' Just be yourself and feel your feelings.

Did you know that writing about your emotions helps you process them?? It's a medical fact.

[isis6361]

Are you not entitled to be angry fed up resentful? No apologies needed. I don't have IPD I just work with it. I also get angry frustrated and resentful at. Parkinson's because of the impact it has on my patients

[salon]

thank you so much no one has ever told me it is ok to feel as i do i know it could be worse but oh please let me deal as i have been doing well since 06 till now i dont know how to be anything but independent so this is all so new

[isis6361]

The issue with iPd is that none of us working with it can predict your future because yo are so Individual . Evn if you didn't have iPd you would have angry fed up days. But I do positive expert patients plan your journey through your condition take control and be th leader. Only you know you only you know your symptoms only you are the expert