Maidstone Support Group

Contact: Margaret

Tel: 0300 999 5090

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Maidstone Support Group meetings are normally on the fourth Monday of each month at The Early Bird pub.  When the Monday is a bank holiday, the meetings will be held on the fourth Tuesday.  See below for upcoming meetings in Maidstone and surrounding area.

The Early Bird, Minor Centre, ME14 5TQ

11am - 1pm

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Fri 4 Sep 2020

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Maidstone Support Group

KENT: Maidstone Meeting Report - February 2020

We welcomed a new lady to the group this month, another casualty of PMR.
Several interesting subjects emerged during this month's meeting, amongst them was Dupuytren's contracture also known as "Viking Disease."  This is a painless deformity of the hand in which one or more fingers (usually the two fingers furthest from the thumb) are bent towards the palm and can't be straightened. This is a common ailment that affects about 10% of men and 2% of women in the  Nordic countries. The disease is most common amongst individuals older than 60. It is called Viking Disease because as the Viking "colonizers" intermarried they spread a malady frequently affecting their hands and subsequently those of their offspring.
Interestingly, the highest prevalence of people with PMR is found in Caucasians, in Northern European countries, especially in Scandinavia. Viking ancestry is associated with increased risk of PMR.
Two people at yesterday's meeting have both PMR and Dupuytren's contracture.
It would appear that steroid use doesn't always mean weight gain. One member of the group reported a weight LOSS of two stone when first put on a course of prednisolone. She also developed low blood pressure. Moodiness and hot flushes were also reported, affecting both men and women.
Having come back into the PMR fold, after a year's remission, I have noticed that my skin seems thinner and I bruise much more easily, get much more tired and have difficulty getting to sleep,  have got a fuzzy "moon face," and feel hungrier. 
One group member mentioned that alcohol renders steroids much less effective. Moderation in all things seems to be the watchword.
The value of "group support" was mentioned, both as a comfort and as a way of bringing a new perspective to bear on an individual's problems. This, it would seem, also applies to problems with self-cleaning ovens!
Next Meeting: Monday 23 March 2020

KENT: Maidstone Meeting Report - January 2020

Discussions at this meeting were wide-ranging: we talked of the effects steroids have on our body and the possibility that steroids mask other conditions of which we are unaware; some people reported restless legs, as well as itchy patches on their arms and legs; weight gain due to steroid intake and how to shed some of those extra pounds; the recurrence of PMR after a year's remission; and the fact that a number of people have problems going to sleep.
"Fred" produced a cookery book, containing some mouth-watering recipes, which suggests that a low-fat, low-meat diet could help sufferers of PMR and GCA.
Two members of the group who are on a very low steroid dose shared their trepidation about taking the final plunge and going "steroid free."
With regard to sleeping problems I have read that "blue light" (which is in sunlight) has beneficial effects during daylight hours and boosts attention, reaction times and mood, but blue wavelengths seem to be the most disruptive at night. The proliferation of electronics with screens, as well as energy-efficient lighting, is increasing our exposure to blue wavelengths, especially after sundown. Light at night is part of the reason people don't get enough sleep. Researchers have linked lack of sleep to increased risk of depression, as well as diabetes and cardio-vascular problems.Fluorescent lights and LED lights are more energy efficient than the old fashioned incandescent lights bulbs we grew up with but they also produce a fair amount of light in the blue spectrum.
The advice seems to be that if you use a night light, use dim red bulbs, since red has the power shift the body's circadian rhythms and avoid looking at bright screens 2-3 hours before going to bed.
However, expose yourself to lots of bright light during the day which will not only boost your ability to sleep at night but also your mood and alertness. Let's not forget that sunlight provides that wonderful VITAMIN D about which I'm always talking.
The dates for meetings for 2020 are as follows (all except one are on a Monday):
24 Feb; 23 Mar; 27 April, TUESDAY 26 May; 22 June; 27 July; 24 Aug; 28 Sept;
26 Oct; 23 Nov and 14 Dec. Hopefully there will be a Festive Meal after this last meeting.
Please remember that meetings begin at 11 o'clock.

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