Ditzy is our Commander in Chief. She does all the organising- booking the rooms, chasing up participants, bringing the cups, the biscuits and the leaflets. Driving around the region to help people gather together to help each other.
It’s PSP support group time.
It’s easy to underestimate how important support groups can be. Some groups focus on ‘doing’, fundraising and the like. At the minute our three small groups view the room as a few hours of respite. A chance to just be. A chance to share. Sometimes the combination of raw emotions in the room can lead to tense situations, More often there is an outpouring of recognition, ‘me too’. Validation. That very powerful feeling of ‘belonging in uncertainty’. Talking to people who understand what they hear. Asking the questions you don’t want to ask of people who know those questions, who’ve had to work out their own answers. Managing to laugh, despite yourself.
It is humbling to be part of conversations with people about loneliness, isolation, being dismissed by doctors. To hear people ponder how their loved one may be better of if s/he had a form of cancer. To be with people as they cry in despair, as they cry for their spouse, as they cry for the life they have lost. People grieving as their loved one lives. People talking about being abandoned by family, by friends, by health professionals. And the odd celebration- a neurologist or a physio or a social worker who was helpful; a technique or an aid that worked for a while.
When I wonder, through my brain fog, what I’m doing, I consider the support groups. When I talk to medical students, allied health professionals, government Ministers and civil servants, commissioners, I’m talking for all the people at the support groups. People like Herself, or my aunties, or Ditzy. I’m doing it for us all.
You know who to blame!
Contact the PSP Association
Telephone: 0300 0110 122
Email: helpline@pspassociation.org.uk
If you or your family live with a rare condition (or have done within the last 5 years) please consider completing the LIving Every Day with Rare Disease survey: we need your knowledge and experience to shape the way that treatment, care and services are managed and delivered.
me, mine, and other bits 
People helping people. There is no denying the value.
If not for you I probably would not have picked up on this.
http://globalnews.ca/news/1179028/canadian-doctors-launch-rare-disease-database-for-international-research/
Thank you for the link; that’s great news 🙂
I’m laughing at how I have worn down the bloggy buddies- Debra finding a rare disease video, you spotting this … I love the internet!
I was long best worn, prior to our paths crossing. The true the internet can do wondrous things, but it takes open minds to do anything with it.
The best day out for years, laughling, fine dining and meetin some folk for the first time. The pleasure and satisfaction could not be bought. I am the bossy one and my best mate just agrees. Thanks for all you do Miss F. Couldn’t do without you.
Ditzy
Keep it up; fight the good fight, you should have one of those Viking type horns that you blow just before you get into the car. You are definitely more than a tea and cupcakes duo.
Carol don’t you think we blow our horns enough, we are not the shy reticent creatures you know.
That’s why I had this vision of a loaded up car, one jumping into the driver’s seat while the other (one leg in the other still out) blowing a Viking type horn thing before the car sped off and headed around the corner on two wheels 🙂
Support can come from so many different sources, and we blogging friends of yours do feel allied in our concern and interest in letting you and others know that we care. But speaking for myself, and probably most others, we don’t know PSP. We don’t know the isolation and heartache of a rare disease and so there just must be opportunities for individuals to share openly and without reservation and without any censoring. “Rounding up the troops” is a perfect title for this post. I am so glad you have some wonderful people alongside you in the fight. ox