A Parents’ Perspective
There is nothing more daunting to a parent than to have a child diagnosed with a terrible disease, especially when it’s MS. The time our daughter Leanne was diagnosed, will be remembered as the hardest days and nights my wife and I spent together trying to get our heads around this astounding news. Yes! By now you may have connected the dots, but if you haven’t then the daughter I am talking about is Leanne Boothroyd. Well known in MS circles for her bright bubbly nature and caring words.
We are talking to you from a parent’s perspective that has seen many changes in our daughter’s disease over the past 11 years. For many years her MS was stable and with Leanne’s fighting spirit she was able to assist her parents to come to grips with her disease. The most important thing that was evident from that first diagnosis was that this was going to be long and hard journey, but Leanne was able to reassure both her mother and I that she was going to be alright. Leanne was never a “ME” child she just got on with life so much that my wife and I commented the other day “How much of our lives do we think we would have shared with Leanne if she had not been diagnosed with MS” That answer will never be known but one thing we can comfortably say is that it has brought us very close together as a family, her brother and all other family members being totally supportive of Leanne.
The MS journey Leanne has talked about in her own letter speaks for itself and we don’t want to dwell on the fine details of her journey because it is still in progress, but from a parent’s perspective, you have to find a way to cope with the changes to the dynamics because outcomes are unknown.
One of the best pieces of advice we were given was to realise that it was our daughter who has the MS not us and it would serve no purpose us becoming a basket case over something that is out of our control. As her father it took me a long time to come to grips with this and not feel sorry for what our daughter was going through as my aunty had MS and struggled with it. We soon adopted a position to listen and support Leanne the best we could, not to the point of overpowering her with affection or pity. Leanne was experiencing her own grief and we both agreed she needed strong people to take up the slack in her life when she needed it.
The next bit of help is to take control and not believing that “neurologists are anyway near curing MS” for they are not even close, so it is your choice to take control of the disease yourself and become your own advocate. How do you do this? Connect with others with MS. Over time Leanne has built up a network of some of the most wonderful people on this planet. Friends with MS can share and comfort each other when things are really bad. Leanne found that by not feeling all alone with her disease bought some sort of mild comfort and resolve to know how others were feeling and coping. Mum’s and Dad’s, friends, family members and husbands are all essentials in making MS just a little bit easier to bear.
Taking control is essential. Leanne’s MS declined badly after giving birth to our first grandchild, things were so desperate that we had to find another alternative to the drugs she was on. A web site in the UK we followed quite regularly wrote about a procedure done by an Italian doctor Paolo Zamboni to relieve the MS symptoms of his wife, this looked really promising. After lots of research and talking to Interventional Radiologist we were able to get Leanne to visit an IR in Melbourne. Leanne’s neurologist was not in agreement with this procedure even though he was asked to review her progress.
It was approximately 3.5 years ago Leanne was diagnosed with this not yet recognised condition called CCSVI from this wonderful IR who must remain un-named. Subsequent treatments to rectify her CCSVI have bought a welcome change in her MS symptoms and she has been free of relapses from this time onwards. Through a group of friends at CCSVI Australia she has been able to connect with people all over the world. These people have had the CCSVI treatment and are the fortunate ones, because to some degree the angioplasty treatment for CCSVI has given them some respite and control of their disease. This has lifted Leanne’s spirits and hope for a better future.
Is there cure on the horizon? Not to our knowledge. There are plenty of nasty drugs, but no CURE as yet. The new paradigms of MS symptoms being affected by vascular irregularities, CCSVI and bacterial infection makes good sense and will be explored for the next 10 years before anything definitive is found. What most parents fear is that their child does not have 10 years to wait around – Don’t wait.
We as a family are looking at taking positive steps with treatment of this disease and we are exploring every possible avenue and options to give Leanne back her life. Leanne is a great daughter, mother, wife, workmate, best friend, sister and we all love HER.
ROBERT AND MARGARET SMITH
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