Return of the Bouche

A couple of months ago, I realised that I hadn’t blogged for a while and I thought to myself that I should get back to it and write a post. But, if I am honest I just couldn’t be bothered. It wasn’t that I had fell out of love with the Bouche blog or that I didn’t want to write (I have had plenty to write about!) I can’t even say I haven’t had time as I had six and a half weeks off in the summer after having carpal tunnel surgery!
I can’t really pinpoint what has made me not want to blog. It is probably been an amalgamation of things. I know feel like I want to blog again and hopefully this time, I won’t lose my momentum.

My last post told of my pending motor test for HD and touched very slightly on how I was feeling about it. I was very nervous as I had convinced myself that I was showing signs of HD. I have always had a firm plan regarding any kind of testing for Huntington’s disease.
I am very anti having the genetic testing for Huntington’s disease done. I have always said that if I was concerned that I was showing symptoms that I would have the motor function test done first. If this showed that I was showing some symptoms, then I would have the full genetic test done.
So I had the motor test done and I am not showing any symptoms of HD, which means I won’t be taking the gene test in the foreseeable future. Which came as huge relief. It also gave us the green light to start trying for a baby. Our baby plans came to a halt last year as Mr Bouche’s mum was diagnosed with lung cancer in February 2012 and passed away in November 2012. But, we decided to start trying in July this year (I have another post on this, following shortly!)

I have put all my personal fears to rest for now. However, Daddy Bouche has been going downhill slowly in 2013. Nothing major, but I just know in his eyes he has had enough. He has had some chest infections and his eating has become a little erratic at times where he does not want his food when being fed. He coughs quite a lot when being fed and his feeding is becoming a concern as he cannot be fed safely anymore.
After a meeting with his gp, speech therapist and staff at his home, it has been decided between us that he will have a peg fitted to feed him directly into his stomach. I have really battled with this in my head as his eating was the last one pleasure he had (albeit eating puréed food). I feel like I am forcing something on him that he wouldn’t want but I also cannot let him be fed dangerously or not at all. It has been really hard and we are just waiting on the appointment for the gastroentologist.

My younger brother M has also decided to have the HD test a few weeks ago and he gets his result next week. I am terrified for him. There is a part of me that thinks he has HD and I have done for a long while but I still hope that he is HD free. My wonderful uncle (Daddy Bouche’s brother) had the test earlier in the year and was negative which was amazing news. I just hope M has the same result!

More to follow……

Bouche x x x


2 responses

  1. i too worried myself into seeing signs of hd and didn’t take test for years and then decades. then one of nieces was 28 yrs. had three young babies said she was taking the genetic test so I said well I am done having kids and my life dreams were not going to change now it made no matter at that point in my life but she needed support and advice so I agreed to also take the test at age 55, I was negative she called she was positive………….. so sad so distraught and so worried for her and her kids but guilty as I was spared and my sons were spared. I now no if you have to worry all those yrs. and it can be used to your disadvantage as in my divorce my ex tried to convince the judge that I had my moms hd, the judge explained that only if I took the test then I could ask for future alimony to my advantage but at 36 I couldn’t do the test I too was afraid. but at 55 I took it and won the luck of the draw this time as did my sons and their kids.
    did I feel happy of course I no longer had to fear hd which had been so much a part of my life my dreams and outlook just thinking I had hd was too intense to ever put myself through all those yrs. again if I had to do it all over. not because I didn’t have hd. because I had already convinced my self I had it. I had nothing to loose except all those decades I lost being afraid and seeing hd in everything I did. having lived in fear and then to learn I was hd free just proved that I wasted all those yrs in fear and depression and guilt for my children I was convinced I had put this fear on them too. I didn’t go to college until I was in my late 30’s and I didn’t start my life until I let go of the fear of having hd only then did I really live but mind you it wasn’t till that test cleared me did I learn and realize how much I gave up. in my divorce I gave up alimony and future support due hd. I would not take the test because it could cause me to lose my freedom and my children and every thing in my life would be questioned if it was me as a normal human being with normal moods and thoughts hd could cause everything in my choices could cause me to loose confidence that had been given to me with no hd to tarnish my ability and decisions. so alas I should have take the test back 40 years earlier and started my life then. its your choice to do the test or not but in my own opinion with all the advances they are making recently and in the near future there is more reason to take the test sooner than later to truly start you life free from hd or with hd prior to its harmful effects you will be better able to make decisions you need to make for your future and whether to have children or not. to decide how you want to live your life and to get help early because now we have treatments to help and they on the verge of a cure.
    let me tell you about 5 generations of hd in my family we are the largest family in usa with hd. good cathlics had lots of children . I am one of 14. of those 10 boys now all men or dead. of the 10 males 5 have died from hd, of the 4 women none have had hd so far and of any surviors of this family I alone have taken the test. the freedom it gave me allowed my life to truly begin but I know from living with hd my whole life I have a unique perspective on hd. I cared for three of my brothers with hd until their deaths and then cared for my older brothers child the 28 yr. old until sucuming to hd complications.
    I learned from each of my family members how hd affected them and how they felt about what they each wanted in this life until their deaths and bucket lists and the quality of their lives rather than the quanity I had to be willing to allow things to break in my home and had to be calm when this happened lol. cursing was every day at times. talk of suicide and needs and wants and not . I had to be willing to allow my hd relatives to be who they were and who they needed to be not what the general public would see as the norm.
    hd is a breaker for most families . its so hard to laugh when all you want to do is cry. I want to give any and all who have hd or care for hd or live hd that there is hope for you and them. the time is now we have medcines that help and I learned that just because they cant speak clearly that doesn’t mean they are gone inside. I also learned that right up to the end they see and hear just like you and me but we have to be able to conceive new ways to communicate. for thos living with hd 24-7 know they understand what they are trying to say , we live with them 24-7 just like our todelers learned to talk so too our hd family is trying to talk just in a new way. now for eating. I used a portable food chopper to chop up steak , pork salads and many other foods to maintain their weight and they could eat just like our babies did remember how you used soft foods and ground up foods until they got their teeth. hay you need to explain it may not look cool or like steak but it taste just like the bird and gravy you eat on thanksgiving or xmas. AND ABOVE ALL PLEASE HUG THEM OFTEN even if they don’t want you too. they loose the normal touch you and I taken for granted. we kiss and hug kids parents and family and most of us have partners but those with hd most always are alone in their beds and hugs kisses can become far n few. touch is one way we relate and they need not to be left out . another helpful tip for those of you caring or with an hd member with swimming or lakes outings where there is water. fear not. I had bought several round floats that were tight on the hd pt. over their heads around their chest will stop them from drowing in pools and lakes any body of water. they are head heavy so when in water the head is usually out of water but with hd its heavy so they tend to go head first in water, but with a float ring just under their armpits stops the head from goimg under and allows them to enjoy water again. for food they do need 5000, calories per day but in various kinds they love .
    I used yogurt to cary meds with the thick yogurt it goes down quick and easier most people use applesauce but one of my family hated that so we went with yogurt. I made salads a whole meal and the drink was always ensure to add calories as well water is just so hard for them I used veggies and fruit shakes too get enough water in too. but up until each of my charges died I fed them what they wanted and the same as we ate so they never felt left out or not eating what we did. we also notified close neighbors and local police that we had these family members so if they police got calls for drunk persons falling down they needed to make sure they were not one of my family with hd. also VERY IMPORTANT VERY hd people as the disease progresses they seem to loose their pain notifying signals as we feel pain. they don’t seem to feel pain when injured like you or I would. need to check them if they fell cause their pain signals are not working. also their ability to taste foods deems to get compromised as well they don’t have the ability to sense what they are eating. my neice hated beans but one day she asked for beans and fell in love with them lol it funny but it made me aware of her inability to tell even looking at foods what she was actually eating and seeing it. I hope this will help ….

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