2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures. I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.
I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside. During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends. It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future.
My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it!
As always, my MS has been making itself known. I have had several falls in various situations and suffered lots of bruises. It really does hurt when you hit the ground when you’re this size!
I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome. It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing. Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping. I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.
I am still thinking about HSCT, but two years on, have much more doubt than I did previously. I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.
In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place. I have started a bit of a list and will add to it as I begin my exploration. I am also open to helpful suggestions if anyone has any.
LDN (Low Dose Naltrexone)
“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”. Low-Dose Naltrexone | National Multiple Sclerosis Society
Fampyra
“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”. Fampyra
HRT (Hormone Replacement Therapy)
“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause
FES (Functional Electrical Stimulation)
“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust
Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna
“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy
Improving Gut Health
“The microbiomes of people living with multiple sclerosis (MS) are differentTrusted Source from those of people without MS. Based on this information, the hope is that new therapies can be developed to help people with MS”. Healthline: What’s the Latest on the Link Between MS and Your Gut?
Taopatch
“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch
Hyperbaric Oxygen Therapy
“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust
Cannabidiol (CBD)
“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis
Revitive
“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive
Circle Rehabilitation
“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment
The MS Gym
Exercise
Diet
Car with automatic gearbox and other adaptations
I want to finish by wishing you all the very best for 2022. Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people. Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️🤞🏻
Take good care of yourselves everyone X❤️X