Wednesday, November 24, 2004
davesmsblogg
hello all
just thought I would give an update as every diary should. I have received the news that I have the strongest form of MS. for the people who dont know I have Primary Progressive MS. That meeans the cannot give me things to make me better... they can only give me somthing to stop the progression of the disease. It also could stop me having kids.....if I find that later in my life that I wanted them. I have to have a heart scan to see if my body can cope with the bodily stress. Mitoxantrone is the next step. It has had some great results for people with lukemia and cancer. Of which I dont have either. The Doctor has advised it will stop my production (or calm down) the production of white blood cells. oooh marvalouse!. It appears that white blood cells are attacking the MS and that is distrying my never endings. Can any one suggest anything funny that will get me out of the depression?
posted by personallog! @ 9:06 pm  
11 Comments:
  • At 12:38 pm, Blogger personallog! said…

    I have been corrected by my girlfriend that the possibility of having kids is greatly reduced but is possible. So I am withdrawing the statement that I cant have kids. I dont think my head could deal with having kids anyway. Its hard to think like that anyway. I dont think I could play football with a child anyway. I know that I will see a lot from a negative point of view and I might need correcting once and a while. please feel free to correct my view point by adding your note. I think it would help me to hear your comments, but it might also help others too.

     
  • At 12:47 pm, Blogger personallog! said…

    I have received a cople of comments all ready from friends and family. which is really good to hear. Thankyou all. I think the best way to attack this disease is us all fighting together. I have found a collection of websites from MS sufferers. the 1st one shocked me a bit. www.vixpics.org get your tits out for MS. vicky is raising a lot of money fighting in her own way. its not for everyone but good on you girl. It made me donate £20.00 straight away. she has raise over 4 thousand pounds and you cannot knock that.

     
  • At 1:11 pm, Blogger personallog! said…

    I have received emails from some very lovel people who have seen my blog and I thankyou all for your comments. lets fight this together even if it doent seem like much to drop me a mail its doing loads for me honest keep them coming. Thanks again

     
  • At 4:54 am, Blogger Eriksgirl said…

    Dave,

    Hang in there man. I swear, this first part is the worst. You spend so much time in the what-if, and thinking so much about what can't be predicted. MS is a big thing to swallow. Kinda like the analogy of eating an elephant... there is only one way to do it, and that is one bite at a time.

    On a side note, don't rule out having kids just yet. I swear our little ones keep things from getting to serious sometimes. Besides those times when they keep you so busy you can't see straight!! I promise a two year old has needs that they will convince you are more important that yours!! Ha!! :-)

    On a serious note, don't let things like thinking about playing football with your children shape your future. First who is to say that you won't be able to it. Second, and far more important, that is not what makes a good father. I hate to hear people say that being disabled makes you a lesser parent. Erik is a wonderful Dad, even if sometimes he can't use his hands well, and therefore can't change a diaper. (Maybe that is a good out for that... you should remember that one!!) :-)

    Seriously, I hope that you have gotten a few laughs. I promise you things will get better. It sounds like you have some wonderful people around you, and let them help you out now. It's good to do that. I know I felt really helpless after Erik was diagnosed, and I just wanted to do something. So, your doing the people who love you a big favor. :-)

    I want you to know that I am praying for you. Also, I hope that all your tests and this treatment go well for you.

    Thanks again for blogging your experience. I think you will really be helping people out so much, and hopefully it will help you deal with this too!

     
  • At 5:34 am, Blogger Rita said…

    Hi Dave, I'm not sure how I got here. :) I've been blog surfing this evening. I don't have anything profound to say to you; just that my 33yr. old. daughter has MS so I do know a little about it. She was diagnosed in 1995 with relapsing-remitting. I guess what helps us get from one day to another is:
    #1 Our strong belief in God, and #2 When Cyndy was first diagnosed she said that she didn't want everyone to look at her and think MS; she asked that we have a positive attitude and that's exactly what we do. Sometimes it is hard. She had a flare up recently. We have to be determined to NOT dwell on what could happen; instead we strive to live and function as each day is given. That's the best we can do.
    Come on over for a visit to my blog. Blessings to you.

     
  • At 10:29 am, Blogger Zen Angel said…

    Dave,

    Find humor wherever you can, and friends wherever you might. That's the best advice I can give you. That, and to get in touch with your country's MS Society. You have no idea how helpful it can be. I don't know how I could have gotten through that first year without them.

    As for not being able to play football with your kids....let me tell you, your kids won't mind a bit. I have three; two I had before my DX, and one I had just 14 months ago. There is so much more to being a parent than physical activity. I myself was also raised by a wonderful woman who had physical disabilities (she was legally blind and completely deaf, as well as having an advanced form of osteoperosis). I learned from her things I don't think I could have from a "normal" grandmother. And I am a much better person because of it.

    A final piece of advice: don't be afraid to reach out to the people who are sitting in the boat with you. We're all going through it, and we understand better than the doctors and even the most well-meaning family and friends. I call my on-line MS friends my "Sword Bearers." The Sword of Damocles might be hanging over my head, but my Sword Bearers are making sure it doesn't fall on me anytime soon.

     
  • At 1:14 pm, Blogger Becca said…

    For humor: http://multiplesclerosissucks.com

     
  • At 6:40 pm, Blogger personallog! said…

    I really cant thank you all for your replies. It does mean a great deal to me. I will keep up the work no matter how hard it is and keep you laughing with me in my heart! I am not to sure about religon at the moment but I know if I meat any of you in this life, or the next, I will have a hug for you all. Thankyou all ms sufferers and all with without. Thanks again.

     
  • At 3:52 pm, Blogger Katja said…

    Take a deep breath.

    You're on the right track - keep learning, talk to others with MS, keep in touch with current research and your neurologist. Don't make any huge life decisions right now.

    It is important to get on medication, but this is a chronic long term disease, not something you have to jump on in the next week. Take your time and understand the options.

    Be good to yourself.

     
  • At 3:33 pm, Blogger personallog! said…

    I think katja has the right idea. check out the blog...you can tell you are a software engineer my god! not sure about the avacardo tho! keep hold of the garlick press my friend there are plent of dishes to explor that can hide the garlick taste beleive me I am a trained chef!

     
  • At 5:54 pm, Blogger Katja said…

    Oh, man, how can you not love the avocado? Probably time to change the picture.

    I am keeping the garlic press, in fact I'm keeping the garlic. I sneak it in everywhere, but have stopped sautéeing it; it seems to be the sautéed smell that drives him over the edge.

     
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Name: personallog!
Home: St. Annes, Lancashire, United Kingdom
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I am 6ft 3" skinny and not well. I was diagnosed with ms in 2004 and I would like to speak with others who have ms. I have a want to raise money for ms charities. We have to find a cure for this hell!!!! See my complete profile

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