I used to belong to an organisation that I thought helped people with PD.
Last month I visited some-one in hospital with permission from there son.
The same week I collected a Pd sufferers medicine from the chemist and got him some milk/bread and eggs as he had an awful cold.
Now I have been ostracised from the organisation:- complaints from a committee a thought I knew !
Making awareness/fundraising and "helping" people is made much more harder by the rules and regs one has to follow !
I find I have been able to do a lot more for pd sufferers in the last month.
Take them to exercise classes/hosp appointments/ do there shopping etc...
While not being a member of that organisation:- Which I thought was designed to help.
So it is not always helpful belonging to a specific organisation !
You are also freer to say what you want as in specific people ie the neurologist is terrible/he never refers people, but while belonging to the organisation it was "the neurologist is a busy man/he may be to overworked and has forgot to refer you " etc...
I feel I can do more good now then ever before !!!!!!!!!!!
Any-one had experiences like this ?
Any-one heard of this before ?
Does any-one agree ?
Pingo
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pingopenguin
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Hi Pingo. Yes, this is common. You have to understand that every organisation has to have rules. If you don't agree with those rules, then you have to leave. Which you did. My future wife-to-be worked for an organisation like that and was forced to charge for her services, when she knew that some peope could not afford it. That organisation took the major portion of the charge to cover their 'overheads'. She then left that organisation and did what you do. She had not wanted a financial reward for her work, she just wanted to help other people in need. Today, she is a much happier person and she is much more fulfilled in the work she still does, without payment. Some of the people she helps, insist on paying her, or they give her nice appropriate gifts. You stick to your guns!
well said John and others. Since it's based on personal experience, we can see that you are not alone. I haven't run into this but would just say, as an individual you can often do more good and be freer to respond in helpful ways. Just be sure that you are not enabling the person by doing things for them they can, and need to do for themselves (my husband is now back to dressing himself whereas last fall he depended on me, this was before he got on carbidopa/levadopa).
What I'm trying to say is don't be an 'enabler' and create dependency in those you serve. Foster independence and thinking for themselves. It's sometimes a tough call. We don't do anyone any favors by helping them to be dependent on us. But we learn.
Thank you clanchattan for your caution about belief systems. Well-said and good cautionary words to follow. Thank you.
Hi Quirkyme. I agree wholeheartedly with what you have said. The difficulty is knowing the difference between what does require intervention and what does not. With Pd, it is far better to get the patient to concentrate harder on what he/she is trying to do. In that way, they get better results and don't lose their self-esteem. Just don't rush them!
I don't know which subject your are differing with me about. Several we being discussed at once. I whole-heartedly agree that people need to maintain their self-esteem but am baffled at your comment. Sometimes people need leadership from their Dr., Neurologist, PT, Caregiver. Exercise has been our choice and that is one thing that may have some preventive effect in slowing the disease progression in PD.
I'm not just writing for me, now. As the leader of a PD group of 30 people in New England, I'm getting a sense of what local people want and need.
I still belong to an organisation that has visiting restrictions and needs risk assessments carrying out go venues. It is frustrating but they are there to safeguard the volunteer and the people receiving advice and visits. I stuck strictly to the rules until the organisation realized that changes had to be made. I am pleased to say the these policies are currently under review and that some sort or sense seems to be creeping back into the way in which volunteers can support Pwp.
The changes have come about through the feedback from volunteers and probably the paid staff who seem to be busier than they need be, offering the support that volunteers can give. Fingers crossed for some sense to reign.
As for the advice about consultants. That can be a double edged sword. What suits one person doesn't always suit another. I have found that the Parkinson's nurses are always willing to answer questions about 'best practice' and to advice people about complaining about less than satisfactory consultations.
Thank-you for your comments,On Friday when the weather was appalling A sufferer phoned me to ask if I could go and pick up his dosset box from boots.I asked him to phone boots and went and collected them for him and took them to his flat.
If I had still been part of that organisation I would not have been allowed to do that, but because I had left I could.He only had Fridays meds left so would have run out by sat morning.
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Still not convinced it’s PD
:/ periphial neuropathy
Exercise and PD
One foot in front of the other.
