Sunday 11 September 2022

The day after the road trip to the reunion with dear friends

 I am following up a day of massive sensory overload and hypothermia with a morning resting on my bed with my lower limbs extended but slightly flexed knees. Darker room and some snooze time for a good hour with body core wedged to manage the pelvis torsion and relaxed arms around me. Followed by drinking more tea. I am on my fourth…I have to get some shower earlier after my usual breakfast. My supra pubic catheter is managed with the night drainage bag…I have written that in response to a question on a #MS views Facebook page. Now that is done ✔️ I will carry on for you. 

I have found some relief from this routine over my life with #MS after all grand days out with major sensory stimulation. They follow up days of preparation and šŸ–¤ emotional anticipation. I hope you will understand Multiple Sclerosis is my appendage to settle down quietly.

Sunday 10 July 2022

Dental care guidelines for disabled people with MS

I am a disabled, 66-year-old lady with mobility, core stability and dexterity issues who has had Multiple Sclerosis since 1976. I received personal care at home since 2006. My ability to perform my daily dental hygiene routine is not very good and effective anymore. 

I feel, by now, you will probably be able to picture this.. 

I have routinely relied on my caregiver to help me with internal dental brushing or flossing.

However, I have had one carer who was suddenly refusing to help with this service. Her grounds were that it was not in the care plan and that it would hurt and cause bleeding. This was repeated to me by her manager the following day. I know that they have said they would contact the dental surgery to receive some information.

I have always been worried that dental hygiene isn’t delivered in care homes or to remote social care clients who will need it because of MS or other disabilities in the United Kingdom. 

I would like to know what needs to be done to rectify this situation. I worry that I am not unique in this country being denied daily routine personal dental hygiene by a caregiver because of it’s not in the care plan. It was very difficult to remain calm as I was in my night clothes before bed. I think that it is abuse to someone needing a service that is paid by the social services or even privately. This is never seen through the eyes of the service user.

I think that a few things could happen with poor dental hygiene. Why is it not provided? What sort of education is necessary to have caregivers that have no difficulty with that?

Tuesday 5 July 2022

Having a grand day out

Nothing much happens in my day, recruiting new care assistants is sometimes depressing and making plans to "escape" to have an enjoyable day somewhere is difficult. One grand day out a few years ago was going to the Holburne Museum in Bath and visit the Bruegel exhibition after successfully training two ladies to manage transferring, driving me, managing my wheelchair and attending to my needs in a pleasant location without falling, smelling badly washed and spreading food all over the place. It was very funny to look at people around me. They all looked as if they came out of a Bruegel painting. I think it’s important to stress out that social care needs to be social and that will be difficult to keep up.
Sure thing is that the people that help you have a whole family with issues…they have holidays and health issues and nowadays you have the economic situation of 2022. 

Thursday 23 June 2022

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Sunday 18 February 2018

MS hug feeling

Having a rest in 1980
It was like a garter on my left thigh with a weight that came with the fatigue. It was heavier and heavier until I sat wherever I could. I used to get strangers giving me looks. The hardy ones exclaimed their opinion on my apparent drinking early in the day... It was difficult to get people to understand what I felt. I felt that the Neuro did not bother with it. I felt very much burdened and worried. I felt I couldn't and shouldn't mention that. I had been told not to tell people by my mother.

It started out very early in my first years of Multiple Sclerosis (MS) and continued with different intensity until I stopped walking. It might not have gone as my left leg feels still heavy. Why is it not part of any consultation, questionnaire or assessment? I have never found that it was important but I hope the more it's mentioned it might have a medical name! I called it a garter as it was above my knee. I wonder if what I have is the same as the hug. I did not find anything about it, until People with MS started to mention it online in their blogs or on Facebook.

Saturday 20 January 2018

Using a curved transfer board

Bridge with curved transfer board

I have been using a curved transfer board (aka banana board) provided to me in the hospital when I was getting ready for returning home. My stay in hospital had lasted 15 weeks. I have had Multiple Sclerosis (MS) for more than 40 years and it has slowly but surely settled into Secondary Progressive MS. 

Before my 2008 stay in the hospital, I was able to transfer from seat to seat with efforts by myself. I was able to walk a few steps with assistance, a few times a day using crutches. 

At the time of my hospital discharge, on 3rd June 2008, I was not able to stand within the time it had been expected to make a recovery in hospital. In order to be able to return home, my only option was to accept the idea and pretty fast to use a curved sliding board for transfers because of the wheel of my self-propelling wheelchair. 

Pinching the looped sliding sheet under the
upside down curved board
I was lucky to be trained to use the curved sliding board with assistance using a looped sliding sheet slightly pinched under the board by just one inch or two centimetres under the board. I need to position the wheelchair at an angle less than 90 degrees between the chair and the bed so the transfer is short. The bed is close. The curve of the board fits around the wheel. It is flat AND I feel safe! 

Placing sheet and curved
board under with help of the client. 

If I am transferring from wheelchair to another, I think it works better with the two seats placed at an angle of 90 degrees so both sets of wheels are in the inner curve AND the board is flat! 

Placing hand on board where one is going helps..       
Placing my hand on the board where I wish my bottom to be at the end of the transfer. I bend slightly forward and with my feet on the ground, I step sideways to the desired position. When the end of the pinched sliding sheet is visible I usually ask my assistant to release it. The joke is to say “give me some gas”. Gaining a bit of speed provided by the looped sliding sheet I arrive safely without overtiring. My clothes and the floor are not covered in talcum powder that is used often instead of the looped sliding sheet. This is useful when a care assistant is timed by Social Services and Care Agencies to stay half an hour! I find it astonishing that care assistants are not trained using this method of transfer. 

It is difficult to a person receiving the service to show the safest way for the assistant to place the board between the thigh and the body contoured pressure seat cushion. I have been given amazing explanations…Some are adamant that the board should be used by me on my own! Some ignore the curve…some would place the curved board upside down…showing the pads that are supposed to be underneath for the board to remain secure under the person using it! It certainly adds to the MS fatigue when you are biting your tongue!  I wish I could meet the persons giving handling instructions, as some declare after returning from handling course that board are not used any more (gulp!)! 

I wonder where I would be without my curved transfer board! Multiple Sclerosis fatigue has its ways of weighing down my shoulders and will scupper all my efforts to improve my mobility.

Monday 8 January 2018

Weight management - finding what to do

Should I ignore this? Be quiet have a biscuit or two? Things will get better.
I have not been able to stand steady on a bathroom scale for nearly 30 years. I have said this before. I have destroyed a few towel rails as I was trying to stand. Glancing at my feet made me lose balance. Do you use a stick to get weighed? Two?
People are interested to know my weight. I answer with a weight in kilos. That is a scientific measure that is understood by the health system. I am not coy about it. I weighed myself recently. Yes, I am starting to avoid a clear answer. It was in December last year that I got weighed at Living at the Vassall Centre in Fishponds.
The scales have been moved further from my home. I am not like you able to check my weight at home.
My GP, District nurses, Neurologist or any anaesthetist would get the answer. I will not give a clear answer soon.
I have no scale.
My GP surgery has no scale for wheelchairs.
The Health and Care provider for the Bath and North-East Somerset does not find it is within their remit.