MY BUCKET LIST NO 1 a support group for psp in South Africa

I look at times pretty sickly an invetably the question is asked wants wrong. welll i may as well tell them i suffer from a deadly space virus picked up from a visiting martian.

its a lot easier than saying psp. ...........i tried the easy way out and told people that i have parkinsons.....a classic response was "well you dont have it bad untl you start shaking"

Nevr mind the falls the wheel chair, slurred speech poor vision difficulty in swallowing,

depression etcetc.

Now somewhere in this world is somebody that can give me some inspiration on how to get a support group going on fresh air i am a pensioner.

Even where I get treated whilst the doctor understands, he puts down pArkinsons just in case some nurse etc does not know what psp is.

If you want to help me please contact me ideas, thoughts, xperience will help me befoe i kick the buckeg

8 Replies

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  • Hi whisperer

    It sounds like you have the same challenge as most of us on this site with educating family, friends, helpers, carers, and the medical professionals about PSP (and of course CBD). The Parkinson's Association have support groups. This is a link to those groups: parkinsons.co.za/pdf/suppor...

    (If this link does not work just Google Parkinson's Association South Africa....or this link parkinsons.co.za/)

    I am sure that such groups would welcome your own input of sharing your knowledge of PSP, along with showing them the differences and similarities between PSP and idiopathic Parkinson's. Once you join such a group you may find that it (or the Association) introduces you to other PSP sufferers and carers, and a group could be formed from this information. (Perhaps, there may already be PSP groups, but I'm sure you've already looked into this possibility).

    I personally use this wonderful site to share experiences and questions, but, of course, it's not the same as meeting people with similar conditions "in the flesh".

    I trust you'll find some support from other PSP sufferers and carers in your district, and thus fulfil one of your primary bucket list objectives.

    Take care

    T.

  • Hi you two. My husband has CBD and we have joined the PSP Association in UK as we live here. Perhaps you could find the site from RSA. I also started a Facebook page for CBD people about 3 months ago, which is very amateurish but some people have found it. Good luck.

  • Hi Whisperer. I am in Johannesburg. My father passed away April 2013 from PSP. He was only diagnosed in 2010. From the time he was diagnosed I tried to find a support group. I contacted Parkinson's association and they welcomed me to their monthly meetings, but it wasn't really meetings, it was more entertainment and general get-together with dancers, etc. Fantastic for them, but no-one knew of PSP and I felt more alone than before. I eventually found this site. Now I could talk about PSP freely and someone understood my grief/anger. I have battled to come to terms with my Dad's passing and would love to set up a support group to try and help others in SA. I also have no idea how to go about it.

  • What I did was get some cards from the UK group for PSP. On the back of their card is a description of PSP that points out "not cure and no meds" and "terminal" I believe. You can simply give one of these to a person and tell them to read the back of the card. It is a good explanation and makes it easy to get the message across. Jimbo

  • many thanks have you got thir r mail adddress. or an example you can send me byroads@vodamail.co.za. once again thank you

    whisperer (robbie)

  • Dear whisperer,

    It had been my intention to start such a group but I live in a rural area and there weren't sufficient numbers within convenient travelling distance to warrant it. Cities close bye such as Cardiff (30 miles), Bristol (25 miles) and Bath (35 miles) have groups and for a period I attended the Bristol group. This was held in the home of a former carer who kindly provided tea and biscuits. At the time I was a carer. It was a mixed group of carers and those with PSP. May be I'm over sensitive but I avoided raising certain issues on which I would have appreciated advice in case they caused distress to those living with the disease. I thought that if I started a group I would organise a separate period for carers so they could speak freely of concerns they would not wish to discuss in their loved ones presence. PSP exhibits such a diverse set of symptoms and rate of progression that it would not help if anxiety was caused by discussing a condition that may never affect a particular individual.

    Originally the group was attended by a nurse with specific PSP experience and who was also familiar with the services in the area. If it is possible to have someone with local knowledge of the available social benefits system, who is also well informed of the difficulties faced by those living with PSP, attend the meetings, you will be providing a tremendous service. But it is a big ask.

    The PSPA have information leaflets that explain accurately and concisely about PSP and CBD and I am sure if approached would provide you with copies at nominal expense (postage perhaps). I take your point about doing it all on fresh air, I too am a pensioner.

    I wish you every success with your venture and in raising awareness of PSP amongst the professionals and public alike.

    Kind regards, Jerry.

  • Quickgel, I totally get what you mean. I attended a "Parkinsonian Disorder" group here in the states and it was a mixed group of PSP MSA and CBD but more sufferers than carers. With all due respect to you, Whisperer, while I think any support group is good I would have preferred it to be separated. I attended a PSP conference last year that did so and it was amazing. I have thought about trying to establish one here as well. Good luck whisperer and keep fighting the fight!

    GC

  • Thanks for the encouragement what we need here is somethingfor pSP and mabe CBD on it own. TRying to raise R1000 to start and register a non profit company here, once that is done I am legallly able to solicit donations.

    as my greeting goes MTFBWY May the force be with you!

    You have cheered up my day<!

    Whisperer

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