Category: Advocating

Today, amidst the wind and smoke, with too many more fires starting in the province to keep track of, comes more changes for me.

I have seen more recent challenges again with my health, my brain fog a lot worse, my balance, vision, strength all off, my fatigue so bad, too put it bluntly I look like hell. yesterday the neighbour ladies all didn’t even ask if I was ok, they just said, do you need help you look like shit.

You could blame some of it on environmental factors, the extreme heat and the smoke, but this was more and I knew the environmental factors may be playing into it, but yes I knew it was a lot more.

Today my Doctor confirmed what I had been thinking and feeling. My heart is working too hard, the medications to help it are not enough now. So today my medication for my heart gets doubled, and one more added, he reminded me that we knew this would be where we were headed at some point and we are at that point. So first I go for my second dose of the Covid Vaccine and then I start my new heart meds. I will have to monitor myself until we see how my system adjusts to them.

It is becoming more and more of a balancing act between the different players in my life, but the players are the normal types of players, the players are the parts and pieces of my whole being, my heart, my brain, my vascular system. One changes, they all change, I have to adapt, it’s becoming that the time in between those things happening are becoming less and less. Sometimes I am not sure how long I can keep walking the high wire, or how long my body can is maybe the better way to put it.

Maybe the other question is how long to I want to keep pushing for more. My Doctor has been amazing, helping me have the years I have had, yes with many hospital stays, many hurdles to overcome, but always with the idea of giving me as much quality time as possible. He’s not ready to quit on that idea just yet, but am I? Or is my brain just not thinking well because my heart is not able to give it the blood/oxygen it needs right know? Will I feel like I’ve got more time and good quality still left when my heart is functioning better, if these meds actually are enough. So many questions. Too many things to try to balance.

Not sure how the second covid shot will effect me, coupled with a new mix of medications, I’ll be lying low for a few day, seems funny as it feels like I’ve been doing that for almost two years for one reason or another, either my health, or the environmental factors to which I have no control over.

Pheobe went and got her summer cut today as well so that she can be hopefully a little more comfortable in this extreme heat, she has been a trooper though and the fans have become her best friends, but I’m thankful that she isn’t scared of them. She amazes me every day, at 17, I try to make each day about her as much as I can, but she knows when my system is struggling and she watches over me closely. Together we have been a great team…. I will be forever grateful for the joy she brings me.

Its not always easy to admit the many challenges that have descended on me since my diagnosis, but one of the challenges is my writing. Sounds odd doesn’t it, seeing how I’ve written and had a book published, many articles for magazines, but writing takes on many forms. Technology is great as it helps that I can just type, a lot of times when I’m doing words back to front, or all the letters and numbers in the wrong sequence, it will catch at fix those things, not all but many. Those errors don’t happen due to laziness or sloppiness, or stupidity, they happen because of how my brain and the rest of my body work or don’t work together, and it doesn’t recognize when it is wrong, it sees it right, it’s a very strange thing, hard to explain, except maybe to liken it in some ways to people who have dyslexia. But handwriting is totally different, my hand writing was nice, I had nice handwriting, it is no longer nice, it’s hard because it doesn’t flow easily know, trying to get the words right, the letters right, I have to hesitate a lot, it makes my handwriting more like something between writing and printing. It’s likely why I don’t write very often, I don’t like to see how poorly I manage it. I was proud of my handwriting at one time. It’s not the thought process to write it’s the actual physical skill to write. But I decided a short time ago that I wanted to write letters to certain people and tuck them away from when I’m no longer here, so this means that today I started practicing my writing, trying to find new ways to help myself with this skill.
I ordered my self some old fashioned lined paper and envelops ( see picture below), to write the letters on, I will write them over time, and tuck each one in with my will in my safe.
I know I could type them out and print them, sign them, but somehow it doesn’t feel like that would make it the personal piece I want it to be, somehow handwritten notes and letters still carry a more personal element, and that is what I’m hoping to capture in the letters. I’m not writing letters to everyone and I’m not writing or writing to individual because it means someone holds more value or a more special place than someone who I don’t leave a letter for. For one thing, I don’t have any way to know if I will finish my letters before my end comes, or maybe my end will come when I feel I’ve done all the letters. It simply means I have things I wish to say, something to leave you with.
So while I’m locked in from another day of extreme heat, coupled now by the air being filled with smoke, although slightly cooler, and I mean slightly. It’s making me extremely fatigued, it’s hard with my lungs that already struggle, it messes with my oxygen levels, my sleep is compromised. I’m exhausted, napping when I can, they say we will get a short reprieve after the weekend until then, smoke, wind, lighting, heat, too many fires burning. So I’ve been doing what I can puttering around, my paper and envelops arrived yesterday, so today, after doing some house cleaning, sorting and getting clothes ready to give to the homeless shelter, I decided I should start practicing my writing so that I can start on my letter writing. It’s a project I am looking forward to doing.

People ask why I’m taking pictures of the temperature, well I’m taking pictures of the temperature each day, the skies, the weather, because this has never been these extremes, it’s a way of documenting, of being able to look back. So as much as my letter writing is important so too is my documentation of the weather I am seeing, I do a lot of picture taking it’s my way of documenting life, and things and events as they evolve around me.

The days keep getting hotter and hotter, the intensity of this heat is crippling. I feel like I’ve had to be so isolated for so long because of the pandemic, and know I’m living in the dark because of the extreme heat. My house gets the direct blistering sun from about 11 am, until the sun goes down at around 9 or just after. So I am usually watering from about 430 am until about 7, I can leave the blinds open until about 10, then into the dark I go until sunset. At which time it is still too hot tonight at 930 pm it’s still 43 Celsius at my place it won’t cool down tonight much. It feels like you can’t breathe, the air conditioning is no good for my lungs, but I have to use it, the heat is no good for my dementia, it creates stress on my system which creates inflammation, then the fatigue and brain fog. We have at least another week of high temperatures with lighting expected Thursday. There is already so many fires burning, we are not in a good predicament at this point. So many heat related deaths the numbers are hard to take in. For me I’ve been trying to just focus on each day I’m in, I worry more about getting my little dog Pheobe through this, at 17, this is really hard on her, so she is a big focus, I’m grateful to have her. I don’t cook, everything I eat is cold plate, I don’t want to generate any more heat than there already is.
I know a lot of people don’t believe in climate change but at 62 years old, I am very aware of how much change has happened and it scares me to think if we keep going we may have no chance to fix things, we will be the cause of our own demise. Maybe I could say, it doesn’t matter because I live with a progressive, terminal illness, but it still matters, it still matters because of all those I care about, because of all the animals, and plants, and because I just don’t know how not to care. I love the rivers, streams, oceans and lakes, I love the forest and the countrysides, I love how different and vast it all is.

I wish everyone would tear up there lawns and plant bushes and shrubs, and we need to plant more trees, all the things that help the earth, get rid of all the concrete and go back to dirt roads, half the logging roads are nicer to drive on than the highways, it would do multiple things, slow people down, cool the earth down, encourage people in populated areas to use transit more. Making adjustments and some concessions instead of expecting “ somebody to do something”, as long as it’s not us, could go a long way to helping fix this disaster we have created. Everyone is of course entitled to their own opinions, and I know we can justify why we can’t do this or that, most of those justifications if looked at closely end up being self serving and nothing more.

checking to see if the sun had slipped behind the mountain, so I could open my blinds, and get the remaining daylight in. I’ve been trying desperately to save my plants, I’m losing the battle, it brought me to tears tonight. It’s 5 am, its close to 30 degrees out, the sun is just coming up, today will be the worst I think heat wise. So now and I’m watering again, and I see I have lost more plants, I guess the heat and not even cooling at night is just too much for them. I will continue to try to save what I can. Mother nature is giving us all so many wake up calls. I wonder are we really listening?

I’m glad I’ve only had minimal things I’ve been signed onto over this last stretch, my brain power would not have been able to manage a full slate of things to attend or participate in. It’s been a tough week or two, health challenges, created or worsened by the environmental effects we are living with. I will manage through it and be fine, but I won’t deny how difficult this has been and coming into what would be the hottest months of the year, it scares me to think about what’s yet to come.

Its a good thing I am adaptable, one of the blessing of dementia, adapting to the changes constantly happening within my brain and body, and to the environmental things around me.

This is the temperature on the shady part of my deck yesterday, at 5 am this morning it was already 80 degrees out. This heat dome we are under has never been seen here before in Canada. Most often people refer to Canada being “ the Cold North”, we are anything but cold this year. Our winter was mild, little to no rain in many parts of British Columbia. Our Forests are like tinder boxes. For those of you who know me , you know how much I love being out in the forest, but I won’t be going anytime soon, it’s too dangerous, one small spark could create a fire, and if a fire erupted you could end up trapped. This heat requires monitoring my system, plenty of fluids, early morning, like know at five a.m., the rest of the day, my apartment blacked out, being still, no cooking, unless it’s early am, then it’s outside on the bbq, getting the meal for a number of days ready, mostly though it’s eating salad or ice cream.
Even though I am being vigilant, I am and my system is feeling the strain, not sleeping, more like napping for an hour or two at a time, heat headaches, headaches from the noise of air conditioners running constantly, the effects of the air conditioner on my respiratory system,. All of these things create, brain fatigue, exhaustion, and then brain fog. I am having a lot of trouble yesterday and today, my ability to have thoughts be clear and fluid, mostly non existent, can’t focus, keep losing sight of what day or week I am in. My head / Brain does not feel right, I know yesterday or maybe the day before I had another series of lighting strikes in my brain, the electrical storm in my brain was so intense it brought me to my knees, another Tia, perhaps brought on by my system trying to navigate the immense stress from the heat, my vision is effected today, very weak, well another round to get through, I will be lying low, even more so than what is more my norm know. It’s like even though you know, you do all the things, extra water, don’t stress your system , don’t be in the sun, your system still somehow feels the effects of the situation, and this situation is the heat, like we have never seen.
I worry about those who are not able to recognize the impact this weather may have on their system. I never really thought about it much until I found myself struggling cognitively yesterday more than I have for the last little while. But the heat is making my brain tired, and when you think about it, it makes sense that it would impact my dementia, the heat creates inflammation and swelling in our bodies, causes us to retain extra fluids, so more inflammation means my system works harder and my brain is the centre of it all.
I am still trying to go for a bike ride or walk but very early in the morning, but only every other day. My main focus is spent trying to keep my plants alive and my garden, I’m not sure if I will be successful, 112 or more degrees is a lot for them, but I am trying, I have rigged up extra watering units, have an umbrella trying to provide some shade, I wish I had one of two more but they are stressed and showing the heat fatigue as well, and it’s supposed to get hotter each day for a number of days to come. We are running at least 20 degrees higher than normal, and we are still only in June, Normally July and August are our warm months, but even then these temperatures are not seen.
I hope people living with dementia, or those caring for people who are ill, elderly or somehow just frail and children and animals are understanding that even if they are doing and protecting them from the direct heat, the effects of this type of heat can and will be felt, appetite changes, sleeping patterns, mood, behaviour, cognition, so please be ware and do extra checks provide light snacks instead of meals to ensure nutrition is taken in, and water, popsicles, a bucket of cool water for your feet, nap and sleep as your system needs. I am feeling grateful that I still have the ability to recognize when my system is being effected, and not being left to someone else to decide if it is or not. I have seen it often that people think just because you stay out of the sun, or indoors out of the heat, that you can’t feel it’s effects, but that’s not true, our systems do, so I’m grateful that I don’t have to hope that someone would be willing to take that into consideration.

Today I am not writing about Dementia, today I am not writing about my adventures. But today I am writing about events unfolding here in Canada that have such a deep and profound impact on me, that I feel I need to help be a voice for these children and their families.

Here is two small clips outlining what has transpired in the last few weeks including today discovery.

Preliminary findings from a survey of the grounds at the former Kamloops Indian Residential School have uncovered the remains of 215 children buried at the site, the Tk’emlúps te Secwépemc First Nation said 

Today this was announced :

Sask. First Nation announces discovery of 751 unmarked graves near former residential school

Once again I found myself sitting in a puddle of tears, my heart aching for those children, for their families. It is time we search and find all the children who were taken and never returned from the residential schools here in Canada.

I am not normally one to talk about religion but in this instance I find myself compelled to say a few words. I know many people who are deeply religious and very good and kind people. I believe that many churches need to get over themselves and their attitude that they are somehow superior to others. Religion can and often does many many good things, but we cannot ignore the things that are not good. You cannot hide behind the church or the cloth of the church, and allow that to justify and excuse the events that unfolded in our residential schools. I don’t care what religion, what believe system you have, right is right and wrong is wrong. That people outside of the church, politicians and citizens alike, somehow felt that they were superior to the true owners of this land that we live on today, allowed them to subject these children and families to these atrocities.

Maybe many of us were not directly responsible, many of us were just children ourselves, but knowing what we know now, we must speak up and demand that we do everything we can to find all these children, to allow our aboriginal people to be in charge of the process, to be in charge of how to provide healing for all their people, we all must ask for forgiveness for the wrongs done, we must all be part of a better future for all. We all need to be part of the healing.

We are not superior, we are all just people. I am someone born in Canada, but it does not ever leave me that my family came from another country. They settled here, build a life here. Being born here, Canada is my home land, and I want to be a proud Canadian, I want to be that country where we truly to honour all who live here. I do believe we owe our deepest gratitude and thanks to the Aboriginal Peoples of our Country, who cared for it and nurtured it, so that we could have the life we have. It is time we offer them help, help to heal and recover. We can no longer blame the problems found in many aboriginal communities, with alcohol and drugs, on them, for it is us that caused these catastrophic events that perpetuated these issues, we are the ones who forced them to live on what we termed (reservations), we are the ones who thought it ok to place the children in residential schools without any accountability for what was happening inside those walls.

Today I am not so proud, I am deeply saddened and sickened by the events unfolding in this country, and whether there is a pandemic or not I believe it is our duty to place finding all of the missing children, and looking at ourselves and really deciding who we are as people and who we will be going forward.

We need to ensure that this can never be forgotten, we need to take stock, and whether we are directly responsible or not, or ancestors, the people elected to power in politics, the people who attended church, without standing up and saying this is not ok are responsible, it is up to us to say I’m sorry, never again will we be willing to turn a blind eye, because it was in fact that fact that non one did anything that allowed this to continue for as long as it did. I am saying I’m sorry, I am saying enough, I am saying I will use my voice to try to ensure that every child is found and returned. We need not look far, look at your own children, grandchildren, nieces, nephews take a good look, because just because it happened then and just because it didn’t happened to you, doesn’t mean that if allowing it to go without full accountability means that next time it could be you or yours. These of course are my own thoughts, sorry if its offensive to some, put I am truly heartsick over this.

Waking up this morning at 430, enjoying the quiet of the early morning, listening as the birds wake, it’s such a peaceful time of day. It’s been a nice day, quiet day, but reflecting on the last week or two and the adventures I’ve been on, it’s been good for me. I’m calm and peaceful, content, that’s what nature gives me.
l had a great appointment with my specialist on Friday, it was uplifting, which is something being most specialist appointments are anything but.
Saturdays climb to the top of Blue Nose Mountain was exhilarating, my trips up to two beautiful lakes, incredible.

Ive also been spending lots of time writing my second book, which is somehow just flowing out of me, I’m excited about it, and so I booked myself a three day writing retreat for myself in a little rustic cabin, on a lake I’ve not been too, right on the water’s edge for me and my little dog, the end of August, a nice day drive from home. I am so very excited for that little get away, and hopefully it will be the perfect spot to work on some aspects of my new book.

Then this morning I had a wonderful video call with my beautiful step daughter and grandkids, a beautiful surprise to tell me I’m going to be an Oma again in January, I can’t think of a better way to start 2022. I am so very proud of her and the wonderful young woman and mother she is.

So yes it’s been a rather glorious day. My little garden is growing, although I’m not sure how it’s going to do with the heat, but I will do what I can. I’m eating cucumbers and tomatoes from my plants on my deck, so that’s nice nibbles to have. I’m enjoying and taking this quieter and more restful time, and using it in ways that are bringing joy while, allowing my body to recharge…..I have to quit draining that battery that’s called my brain.

Brain Health Awareness month continues throughout the month of June, and after my friend Brenda told me about a movie with Robert Redford and Nick Nolte, called “A walk in The Woods”, and that it reminded her of me, I decided to check it out, I laughed and cried, I cheered, and I understood so much of what was said and not said.So Thank you Brenda for letting me know, I think its a terrific movie for anyone who is ageing and or living with any type of illness, chronic, terminal or otherwise. I think I will watch it again, it is so in line with what I have been doing and want to continue to do. It got me thinking about how often we focus on all the “medical reasons” for us to look after our brains, and they are for sure at the top of the heap of importance, I mean after all if there were things you could do, and often there is so that you don’t end up with dementia or some other cognitive issue wouldn’t you do it? There is also much about the diet and exercise/ nutrition component to thwart off many illnesses that impact our brain health, like diabetes and heart disease. etc., and yes even if you do all those things there is a chance you could still end up with some type of brain/ neurological issue. Sometimes it’s genetics, sometimes it’s the way our system is build, for me it is my vascular system, which is leading the charge. However just because it’s vascular at the core it still means that by looking after my brain health, I give my self a chance to maintain function at a level that allows me to live an independent and full life for longer.
But if we do all that is that enough? The short and simple answer for me is no. There is very large piece that I believe impacts our brain health, which in turn impacts all of our overall health. That is, our Mental Health, when we look after our mental health we tend to then look after all those other aspects of our brain health. I know the two are interconnected, but often we tend to separate them, we put Mental Health into one box and Brain Health into another, and often from a medical view they are very different, dementia is very different from bi-polar, or schizophrenia , or epilepsy, yet they are all related to the brain.
So why then am I talking about our mental health as part of brain health awareness month. Here’s the thing, when I look after the things that impact my mental health, like stress, fatigue, sleep, I look after my brain health. If I deal with traumatic events that I may have buried or locked away, when I accept things that have happened, I make room for things like joy, happiness, laughter, real laughter, I make room for good things positive things to move into my space. When I let go of anything that is negative or toxic to my well being, that is draining me and blocking my ability to find and seek joy in simple things, that is me looking after my mental health, therefore my brain health. My brain Health gets an immediate boost, less brain fog, less fatigue.

I have learnt that my brain health, or more specifically for me, my dementia and it’s symptoms become much more pronounced when I am not keeping things in balance, when I overload my plate taking on too much, pushing to do more, sorta like jumping back into the rat race we all believe is life. We somehow believe we have to be that busy, that there’s nothing we can do about it, we have to work that much, we have to belong to this that and the other, we never say no. We become so over busy, we often can’t even recognize the impact it’s having, often until some type of event makes us come face to face with it.
None of us are perfect and even after some event or diagnosis we can still put ourselves back into that same mode, sometimes it happens slowly and we just don’t realize it, but there comes a point where we do and then instead of continuing to over tire and over stress our systems we have to take steps to regroup, give ourselves permission to put our own well being and mental / brain health first.
Some don’t because they believe pushing through is always best, some don’t because they feel it’s selfish, others don’t because they believe it’s too much work.
I believe we can do much for our mental/ brain health, without making it hard or difficult. Do I think we should all deal with trauma we may have endured, absolutely, but sometimes doing the simple things first allow healing of many of the others. For me I spent years having very types of counselling, to deal with the various traumas that have impacted me, and now it’s about recognizing when it’s time to regrouped myself.

So in that last couple months it became about scaling back how much I’m doing, making room for the things that bring joy, like a walk in the woods, discovering new places in the backcountry, gardening, simple walks taking the time to listen to the sites and sounds, taking photos of things that bring me pleasure. Going for a drive to discover a new area. Learning more about the wildlife I love. For example, I love crows, they are fascinating to me, so I watch them, I listen to them, I talk to them, I learn about them. Most people think they are a nuisance, but they are intelligent, I admire them for their commitment to family and community, they have amazing memories, do you know if they have any type of interaction with you, like perhaps you yelling at them or somehow making them feel you are a threat, that from that moment, if they don’t see you again for forty years they will recognize you, ( you may decide to be nicer to them know). They have strong values. I find a lot of joy in getting to know them.
So it doesn’t really matter what it is you do, it’s about doing something, to find ways and places to let your mind go, to enjoy the silence, so you can hear your own thoughts, not the noise of the world, not all the stuff society is telling us, but to learn to hear your inner voice. Maybe it’s playing or listening to music, maybe it’s art, maybe it’s baking or cooking, sewing, gardening, the list goes on, maybe it’s something as simple as reading a book. For me it’s being in nature, taking it all in, the fresh air, the sites and sounds, and when not doing that gardening, taking care of houseplants, and my music, and of course my little dog. So remember taking care of your brain health, means taking care of mind, body, soul. Give yourself permission to stop and smell the flowers, make life changes if you must, but if making those big changes are too scary then start by carving out time and space for doing things that bring joy. And truly it is about giving ourselves permission to just stop.

I hope you enjoy these photo’s of my adventures of the last little while, my health has definitely felt the benefits. My fatigue is lessened, my brain fog improved, my inflammation markers better, my energy levels improved. Brain Health…. it’s important to all of us, and for those living with Dementia, it truly is something that we have to be mindful of.

So take time to enjoy, it takes time for our bodies and brains to relax, but keep working at it…. there is no harm in doing things in a simpler way.

Today I want to Congratulate the newest members to DAI’s Board, Terry Montgomery, Phyllis Fehr, Julie Hayden and TanTan Ong. I have had the pleasure of working with and getting to know and forming friendships with this incredible group of women, and I believe they will bring much to the board and the direction of DAI. I look forward to working with them as they move forward in their new roles, as a former Board Member to offer support, encouragement, to them all.
I would also like to say far well to the outgoing DAI board members and thank them for their support and friendships and for all the tremendous work done.
Being on the Board of Directors for DAI was a great honour and privilege for me. It is not the first board I have been on, it was just the first board in the Dementia realm. Sitting on any board in my opinion is an honour. For me personally, I took my responsibility as a board member seriously, I worked hard and gave of myself to DAI, to the best of my ability.
But I also believe that part of the role of being on a board, of any type, requires that we work and encourage new people to step into roles on the board, which I also actively did. Because being on the board was never about me, it was always about contributing in a way that would ensure every chance for the organization to move forward . Every Organization needs new outlooks, fresh ideas, a new set of ears and eyes, it’s what keep an organization healthy. Boards that have the same people on the board for long standing lengths of time often end up being more like a club, or clique, a too narrowed focus, because they become narrow in their thinking and often lose the ability to listen to their members at large.

So I am very proud of myself that although I could have sat for one more year, I had to take stock, being honest about what was happening in my own life, looking at the four I had been along with Kate talking to about taking roles, I new it was time for me to step aside and allow them to all take their seats at the table. This was about doing what was best for the organization as a whole not about me. The easy way would have been to sit and try to manage through another year, but easy is not always the right way. I have never been one to take the easy way, I have always made the hard decisions when needed. DAI, has and is a wonderful organization, life saving and changing for many, they will always have my help and support, just from a members role now. I would like all boards to have discussions with their board members around around things like mentoring and watching for those who may make great additions, it’s my belief that people should not sit on a board because of the title it provides them, they should always be willing to step aside if it’s for the betterment of the organization.

I am not sure what’s next for me, this last month as been focused on rebalancing and grounding and taking some much needed rest, still active in things just in a different way. Will the day come when I will actively be part of a board again, I’m not sure, but I am grateful for a wonderful experience.
Advocacy and advocacy work is hard work, but step by step we are seeing things improve, never fast enough for those of us advocating, but slowly the difference is being made. Each and every advocate out there whether on a board or not deserves a huge shout out for all the tremendous work they are doing, so o day I say congratulations to you all for all that you do at whatever level you are choosing to do it, one is no more important than the other. I will continue to use my voice from this new place I know sit, and watch and work with DAI, DAC, and others to continue to make in roads, but for the moment, I’m catching my breath.

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.