In the world of medicine there is many drug trials started and stopped, we have had some drugs provide amazing results for many with varying types of illnesses, people are able to manage their Diabetes and M. S. now, and many live full and productive lives. Cancer has come a long way in the last 35 years, with drugs, and treatment options, some curable, put they at least look at the specific types of Cancers.There is specific treatment options for specific types, lung, prostate, pancreatic, liver and on the list goes.
That is not the case with Dementia, and still most of the focus is on Alzheimer’s and we still haven’t even managed to get the general public to understand that Alzheimer’s is just one type of Dementia. We in recent years hear more about FTD, Lewy Body, Vascular, but their is so many more, so Dementia Specific targets would be great. Progress is being made. Advocates are giving voice to the needs of the many not just hose effected with Alzheimer’s. Advocates are fighting hard for help to get the resources in place and provided that can and do provide a better quality of life.
Unfortunately with Dementia that has not been the case a few medications that help slow the process or if not the process the effects of the progression have come along, and they too are by and large controversial, how much good do they really do, are the side effects worth the gain, how long do they actually work for and what happens at the end of that time? I am caught up in that, they don’t want to stop my medication they believe after two years it no longer helps with any gains, but they don’t know if the losses I could suffer from stopping it could be regained so the decision to just keep going is made, but is that hard on things like my liver and kidneys? Again many factors. There have been too many failed trials to mention.
Last week the world cheered as the approval from the FDA for a new drug was given. I reserved my opinion, I waited with bated breath, and then it happened, controversy erupted, resignations fell, chaos and turmoil. I know people on it, I know someone within my own community who was on it when it was stopped last time he was devastated, when it was restarted he thought he would get to restart, he didn’t, the devastation as send him spiralling and his family is watching the aftermath. It was heartbreaking talking to them about it. He has given up.
I sat thinking and wondering if anyone when looking at whether it is in fact the right time to announce approvals, or give the go ahead ever considers the actual impact on those effected with the illness. Or do they fall to pressure, because it’s more about money and politics than it is about the actual people living with the disease. I wondered do they know that they could send people tailspinning into depressions/ suicides over these decisions. These are real people who hang so much hope on “the cure” that they cannot emotionally or mentally withstand when things go sideways as we saw last week. the heartbreak for families, the deepest wish for someone living with the illness to have a better quality of life, and a prolonged life. Do they ever sit at the table and have that discussion as part of the process, or do they look at public demand, and money to be made, and political gains to be made. I feel bad for the people living with the illness who have to live in the midst of will I still get the drug, will it be stopped, what happens next. Life is hard enough for those living with the illness without those added stresses.
Its awful that as a person living with the illness that I have to even give thought to these things but I do, because I hear the talk, I see the hope, I see the devastation.
I have long ago given up the idea that a “cure” should be looked for, instead money should be put into understanding the 100’s of types of dementia better, finding medications that can help people manage their type of dementia and its symptoms to gain a better quality of life and therefore likely a longer life, with less stress and cost on the whole system. With those who love and care for those with Dementia being able to manage more effectively. I now there will never be a cure in my life time, I’m not even sure they will get to effectively manage many of the symptoms of various types of dementia in my life time. At best I think the people living with Dementia, the Doctors, Specialists, other health care professionals, who are helping with nutrition, rehabilitation, exercise, life style modifications are helping many of us have results that are surpassing what many thought possible. Along with earlier diagnosis.
I don’t believe, Ego’s, Power and Money and Politics belong in the arena when peoples lives are the cost paid, but that is what happens, with total disregard for the impact on those effected. I wish that a cure would be a reasonable expectation, but I worry, because the brain is the most complex part of our bodies, and is understood the least. Don’t we need to first focus on getting a better understanding of its complexities and how how all those different areas and pieces are fully effecting others. We have come a long way, we have a long way to go, I just hope somewhere along the way they can look at the impacts and effects the decisions they make that are far removed of any of the faces they are impacting changes in the coming years.
These are of course only my thoughts and opinions, everyone will have their own, and its most certainly not that I don’t believe in reaching for the stars, but I do believe if you are going to reach for the stars, you better make sure you are looking after those impacted the most.
Chrissy's Journey 