acneruinslives
01-13-2008, 06:52 AM
I just came on here because I am very bummed to see what my father has gone through with MS. He was diagnosed in his early 40's and he is now in his late 50s. It's not pretty, but he still has a positive attitude somehow. If i was him i probably would have just felt sorry for myself and become an alcoholic, seriously. Here's the story:
He was diagnosed in his early 40's and a few years later after the diagnose he had to quit his career that he loved which also took him his whole life to get. Also, he was making a big salary, lso luckily with good benefits for his retirement he was able to go to expensive doctors that did treatments and drugs that did absolutely nothing. Slowly but surely he went from taking many breaks, to a cane, to a walker, and then finally a wheelchair which is his only means of transportation since he cannot walk at all now. He can't use his right hand and he is dependent on someone to take care of him--even bathe him which must be very humiliating.
I read some posts about people having numbness and muscle spasms. That’s the only beginning of this chitty disease. A few years ago he has also been diagnosed with osteoporosis which is common with MS. His muscles are also deteriorating even with exercising three times a day with a personal trainer. A stander, weights, you name it. Very strict diet too. There's only so much you can do when you can't walk or have full movement in your hands and arms. This disease is so ******ed up in everyway imaginable. Sometimes i wonder if cancer is better to have because you are not being tortured for years before you die and you still have a little hope of curing it. After looking at all the MS posts there isn't much hope but just people saying how they are slowly getting worst which i find very depressing.
Anyway, I have parents who still stuck together but my mother had to quit her job to help take care of him--and i'm having a very hard time with watching my dad -I guess you can say deteriorate, I can't imagine what my mother is going through. The most frustrating thing is that he has been the most honest, religious, faithful person his whole life and this is his reward? If you talked to him on the phone you wouldn't even know he is suffering because he is so positive and doesn't complain...
Well, maybe someone can give me hope and say ways they reversed ms or at least made it dormant. My hearts go out to you people and hopefully you don't have my attitude because you won't go far, but i speak only the truth of experience.
P.S. I’m an atheist now.
He was diagnosed in his early 40's and a few years later after the diagnose he had to quit his career that he loved which also took him his whole life to get. Also, he was making a big salary, lso luckily with good benefits for his retirement he was able to go to expensive doctors that did treatments and drugs that did absolutely nothing. Slowly but surely he went from taking many breaks, to a cane, to a walker, and then finally a wheelchair which is his only means of transportation since he cannot walk at all now. He can't use his right hand and he is dependent on someone to take care of him--even bathe him which must be very humiliating.
I read some posts about people having numbness and muscle spasms. That’s the only beginning of this chitty disease. A few years ago he has also been diagnosed with osteoporosis which is common with MS. His muscles are also deteriorating even with exercising three times a day with a personal trainer. A stander, weights, you name it. Very strict diet too. There's only so much you can do when you can't walk or have full movement in your hands and arms. This disease is so ******ed up in everyway imaginable. Sometimes i wonder if cancer is better to have because you are not being tortured for years before you die and you still have a little hope of curing it. After looking at all the MS posts there isn't much hope but just people saying how they are slowly getting worst which i find very depressing.
Anyway, I have parents who still stuck together but my mother had to quit her job to help take care of him--and i'm having a very hard time with watching my dad -I guess you can say deteriorate, I can't imagine what my mother is going through. The most frustrating thing is that he has been the most honest, religious, faithful person his whole life and this is his reward? If you talked to him on the phone you wouldn't even know he is suffering because he is so positive and doesn't complain...
Well, maybe someone can give me hope and say ways they reversed ms or at least made it dormant. My hearts go out to you people and hopefully you don't have my attitude because you won't go far, but i speak only the truth of experience.
P.S. I’m an atheist now.
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Snoopy61
01-13-2008, 08:53 AM
Hello, acneruinslives.
Sadly, some like you dad have a very progressive form of MS. I am very sorry :(
Anyway you look at it this disease sucks. Unfortunately, there is no reversing this disease. There are remissions but your dad doesn't sound like he has those. For the most part MS is known as being a progressive disease. The most any of us can hope for at this time is the drugs available will slow down the progression but it doesn't always work that way.
You are right - there is much more to this disease than having numbness or muscle spasms. But, as minor as you may find those symptoms it can be very scary for someone experiencing them.
MS is still a disease that is not fully understood.
You say your an atheist and I really understand why you feel like that but you might really look at your dad, I mean really look, beyond the MS. Your father has kept his faith, beliefs and positive attitude even with the affects this disease has had on him. Your father is quite strong of mind if not body and your mother is a caring and loving woman.
Sadly, some like you dad have a very progressive form of MS. I am very sorry :(
Anyway you look at it this disease sucks. Unfortunately, there is no reversing this disease. There are remissions but your dad doesn't sound like he has those. For the most part MS is known as being a progressive disease. The most any of us can hope for at this time is the drugs available will slow down the progression but it doesn't always work that way.
You are right - there is much more to this disease than having numbness or muscle spasms. But, as minor as you may find those symptoms it can be very scary for someone experiencing them.
MS is still a disease that is not fully understood.
You say your an atheist and I really understand why you feel like that but you might really look at your dad, I mean really look, beyond the MS. Your father has kept his faith, beliefs and positive attitude even with the affects this disease has had on him. Your father is quite strong of mind if not body and your mother is a caring and loving woman.
Bearygood
01-13-2008, 11:52 AM
Hi, acneruinslives. I'm truly sorry to hear about what your father is going through
I'm not minimizing your father's situation at all but in consideration of others (especially the newly dxed) who may be reading this thread, I do want to say that the smallest percentage of people with MS will follow a most aggressive course (and I believe the statistic is less than 25% of people with MS wind up in a wheelchair). The risk associated with osteoperosis is with anyone who is not ambulatory, not the general overall MS population. Many people with MS lead normal or relatively normal lives and disability can be nothing, slight, severe and everything in-between. I don't know where or what you've been reading but what you are describing is not inevitable. The "truth of experience" you speak of is your father's/yours. Everyone's MS is different, in terms of how it manifests itself, how or if it progresses and if any, what drugs will be effective.
My heart goes out to your family. It's a difficult thing finding peace when you're confronted with something like this and I know it's difficult seeing someone you love in pain. Your father seems like an incredible man and despite what he's experiencing, am glad that his attitude is positive.
I'm not minimizing your father's situation at all but in consideration of others (especially the newly dxed) who may be reading this thread, I do want to say that the smallest percentage of people with MS will follow a most aggressive course (and I believe the statistic is less than 25% of people with MS wind up in a wheelchair). The risk associated with osteoperosis is with anyone who is not ambulatory, not the general overall MS population. Many people with MS lead normal or relatively normal lives and disability can be nothing, slight, severe and everything in-between. I don't know where or what you've been reading but what you are describing is not inevitable. The "truth of experience" you speak of is your father's/yours. Everyone's MS is different, in terms of how it manifests itself, how or if it progresses and if any, what drugs will be effective.
My heart goes out to your family. It's a difficult thing finding peace when you're confronted with something like this and I know it's difficult seeing someone you love in pain. Your father seems like an incredible man and despite what he's experiencing, am glad that his attitude is positive.
MSJayhawk
01-13-2008, 01:09 PM
I have primary progressive MS and I focus daily on small steps. While in the house I use a powerchair about 90% of the time. Outdoors I use a mobility dog and take time to stop and rest when fatigue sets in. I trust in God each day and relish my independence. There are things that I can not do and I have relinquished those things to others.
To me (my opinion), I never want anyone to feel pity for me. Your dad can still enjoy a certain amount of independence with disability aids. When I am "just sitting there", I could take up drinking, but God has blessed me with so much more. I have long term goals and I will not allow my MS to rule my life.
Your dad is blessed to have a wonderful caregiver, your mom. That said, you have to make sure your mom gets time off for herself so she does not suffer from fatigue. This might mean a home health nurse or yourself coming 2-3 times a week so your mom does not suffer from overwork.
To me (my opinion), I never want anyone to feel pity for me. Your dad can still enjoy a certain amount of independence with disability aids. When I am "just sitting there", I could take up drinking, but God has blessed me with so much more. I have long term goals and I will not allow my MS to rule my life.
Your dad is blessed to have a wonderful caregiver, your mom. That said, you have to make sure your mom gets time off for herself so she does not suffer from fatigue. This might mean a home health nurse or yourself coming 2-3 times a week so your mom does not suffer from overwork.
MS for life
01-13-2008, 02:15 PM
Funny to read your post, because I was diagnosed about a month ago and go this week to the MS Specialist to decide on my line of treatment. I have been reading quite a bit and found last night that I am afraid I am not one of those slow MS people and that maybe I am one of the few that starts right off at the Primary Progressive end. With that, I was in church this morning and trying hard not to think the dreaded, "Why me God?, but did anyway." Then our pastor was talking about baptism and by grace we are all saved. Well, I realize God must have another reason for giving me this terrible disease and while I may not know now the reason, I will trust in him to make these decisions in my life. Maybe he knows this will slow my life down so that I can start appreciating more, instead of just racing through life to get to the next milestone. Not to preach, but maybe you should try to find out why your father is so optimistic, instead of trying to put down his faith. He sounds like he had/has a pretty great life to me. There are many people that would trade all the money/time/health they have just to have someone as special as your mother alongside them and a child he must love very much (YOU).
cyprian1
01-14-2008, 10:27 AM
I just came on here because I am very bummed to see what my father has gone through with MS. He was diagnosed in his early 40's and he is now in his late 50s. It's not pretty, but he still has a positive attitude somehow. If i was him i probably would have just felt sorry for myself and become an alcoholic, seriously. Here's the story:
He was diagnosed in his early 40's and a few years later after the diagnose he had to quit his career that he loved which also took him his whole life to get. Also, he was making a big salary, lso luckily with good benefits for his retirement he was able to go to expensive doctors that did treatments and drugs that did absolutely nothing. Slowly but surely he went from taking many breaks, to a cane, to a walker, and then finally a wheelchair which is his only means of transportation since he cannot walk at all now. He can't use his right hand and he is dependent on someone to take care of him--even bathe him which must be very humiliating.
I read some posts about people having numbness and muscle spasms. That’s the only beginning of this chitty disease. A few years ago he has also been diagnosed with osteoporosis which is common with MS. His muscles are also deteriorating even with exercising three times a day with a personal trainer. A stander, weights, you name it. Very strict diet too. There's only so much you can do when you can't walk or have full movement in your hands and arms. This disease is so ******ed up in everyway imaginable. Sometimes i wonder if cancer is better to have because you are not being tortured for years before you die and you still have a little hope of curing it. After looking at all the MS posts there isn't much hope but just people saying how they are slowly getting worst which i find very depressing.
Anyway, I have parents who still stuck together but my mother had to quit her job to help take care of him--and i'm having a very hard time with watching my dad -I guess you can say deteriorate, I can't imagine what my mother is going through. The most frustrating thing is that he has been the most honest, religious, faithful person his whole life and this is his reward? If you talked to him on the phone you wouldn't even know he is suffering because he is so positive and doesn't complain...
Well, maybe someone can give me hope and say ways they reversed ms or at least made it dormant. My hearts go out to you people and hopefully you don't have my attitude because you won't go far, but i speak only the truth of experience.
P.S. I’m an atheist now.
hello - thank you for sharing your families MS situation ... sounds to me like you are angry for all of us .. get involved in helping find aid for people with MS , instead of being so angry .. but thank you .. that is/was my fear .. being PPMS .. but now i am afraid to say, RRMS .. and slowly , yes it is aggitating , but acceptance of your life and faith is what keeps me going .. i now now that you cannot lump everyone into one ball and say that's it no point to trying , you're fate is sealed .. try volunteering with people who need the help .. if i were whole i would.
I always thought a non-profit place that sends reliable, and capable mser's to tend to fellow mser's would be a proactive thing to do .. even if it is just listening while you talk them out for a walk .. cook for them so they have less to do and be able to go and help clean up , thier house, laundry or whatever , to make their lives better, and in return it gives people like me an opportunity to know that we can survive, and as a group or small groups around .. anyway that is another story ...
i don't worry anymore about much .. no point , you can't take it back .. but you sure can recapture some of your skills and share and care ... we each have that capability in all of us ..
I am grateful for people like your dad , who refuses to give in, and no , it does not seem fair , but many here feel that way at times .. even "normal" people feel life isn't fair .. that is where educating the public en mass would be helpful .. so maybe ou can help your mom take care of dad and hear him and what he has to say , and maybe get out there whenever an MS event is taking place and get vocal ... you can be our voice , and then you are not helpless ..
He was diagnosed in his early 40's and a few years later after the diagnose he had to quit his career that he loved which also took him his whole life to get. Also, he was making a big salary, lso luckily with good benefits for his retirement he was able to go to expensive doctors that did treatments and drugs that did absolutely nothing. Slowly but surely he went from taking many breaks, to a cane, to a walker, and then finally a wheelchair which is his only means of transportation since he cannot walk at all now. He can't use his right hand and he is dependent on someone to take care of him--even bathe him which must be very humiliating.
I read some posts about people having numbness and muscle spasms. That’s the only beginning of this chitty disease. A few years ago he has also been diagnosed with osteoporosis which is common with MS. His muscles are also deteriorating even with exercising three times a day with a personal trainer. A stander, weights, you name it. Very strict diet too. There's only so much you can do when you can't walk or have full movement in your hands and arms. This disease is so ******ed up in everyway imaginable. Sometimes i wonder if cancer is better to have because you are not being tortured for years before you die and you still have a little hope of curing it. After looking at all the MS posts there isn't much hope but just people saying how they are slowly getting worst which i find very depressing.
Anyway, I have parents who still stuck together but my mother had to quit her job to help take care of him--and i'm having a very hard time with watching my dad -I guess you can say deteriorate, I can't imagine what my mother is going through. The most frustrating thing is that he has been the most honest, religious, faithful person his whole life and this is his reward? If you talked to him on the phone you wouldn't even know he is suffering because he is so positive and doesn't complain...
Well, maybe someone can give me hope and say ways they reversed ms or at least made it dormant. My hearts go out to you people and hopefully you don't have my attitude because you won't go far, but i speak only the truth of experience.
P.S. I’m an atheist now.
hello - thank you for sharing your families MS situation ... sounds to me like you are angry for all of us .. get involved in helping find aid for people with MS , instead of being so angry .. but thank you .. that is/was my fear .. being PPMS .. but now i am afraid to say, RRMS .. and slowly , yes it is aggitating , but acceptance of your life and faith is what keeps me going .. i now now that you cannot lump everyone into one ball and say that's it no point to trying , you're fate is sealed .. try volunteering with people who need the help .. if i were whole i would.
I always thought a non-profit place that sends reliable, and capable mser's to tend to fellow mser's would be a proactive thing to do .. even if it is just listening while you talk them out for a walk .. cook for them so they have less to do and be able to go and help clean up , thier house, laundry or whatever , to make their lives better, and in return it gives people like me an opportunity to know that we can survive, and as a group or small groups around .. anyway that is another story ...
i don't worry anymore about much .. no point , you can't take it back .. but you sure can recapture some of your skills and share and care ... we each have that capability in all of us ..
I am grateful for people like your dad , who refuses to give in, and no , it does not seem fair , but many here feel that way at times .. even "normal" people feel life isn't fair .. that is where educating the public en mass would be helpful .. so maybe ou can help your mom take care of dad and hear him and what he has to say , and maybe get out there whenever an MS event is taking place and get vocal ... you can be our voice , and then you are not helpless ..
MSNik
01-14-2008, 10:36 AM
Ive started to reply to this thread so many times and wound up deleting what I had written because a whole host of emotions assualted me when I read the orginal post....now, I have to comment. What Cyprian said makes so much sense! In fact, what MSfor life said, also struck a chord....
Please dont hate us because we have MS and please dont ever think that any one of us would rather have a terminal illness (you mentioned Cancer) as opposed to MS! I havent heard of anyone on this board, or in any of my MS circles who isnt dealing well with the disease overall. YES its frustrating and at times we HATE having it...but die? No. I dont know of anyone who would rather die.
What MSforLife said about learning how to appreciate things- and not understanding why we are choosen to get this disease- thats such a normal reaction and an answer is elusive. However, she is right when she says that there is a plan for all of us. And you DONT have to be religious to appreciate the fact that we are put on this earth to learn.....and if having a disease like MS makes us learn anything, we learn to appreciate the good days.
What Cyprian said about learning more and educating yourself about the disease is very important. You seem to have alot of anger, which is misplaced. Your family sounds amazing. Your mother and father are very lucky to have each other and have each other's support....the greatest gift you could give them would be to support them, as well. I spend most of my free time, which isnt much on this board. I gain from these people the support that im lacking in at home. My husband might throw a load of laundry in and even make me a cup of tea when necessary, but he will NEVER understand how much saying the right thing, or a simple gesture like pulling me close and holding my hand will change my day or righten my world.
Please keep reading our posts and learn from our lives....its okay to be angry but there are more productive ways to work thru it. Get involved with the local MS society- youd be amazed at how good you feel by giving of yourself to people to which it really makes a difference!
Nikki
Please dont hate us because we have MS and please dont ever think that any one of us would rather have a terminal illness (you mentioned Cancer) as opposed to MS! I havent heard of anyone on this board, or in any of my MS circles who isnt dealing well with the disease overall. YES its frustrating and at times we HATE having it...but die? No. I dont know of anyone who would rather die.
What MSforLife said about learning how to appreciate things- and not understanding why we are choosen to get this disease- thats such a normal reaction and an answer is elusive. However, she is right when she says that there is a plan for all of us. And you DONT have to be religious to appreciate the fact that we are put on this earth to learn.....and if having a disease like MS makes us learn anything, we learn to appreciate the good days.
What Cyprian said about learning more and educating yourself about the disease is very important. You seem to have alot of anger, which is misplaced. Your family sounds amazing. Your mother and father are very lucky to have each other and have each other's support....the greatest gift you could give them would be to support them, as well. I spend most of my free time, which isnt much on this board. I gain from these people the support that im lacking in at home. My husband might throw a load of laundry in and even make me a cup of tea when necessary, but he will NEVER understand how much saying the right thing, or a simple gesture like pulling me close and holding my hand will change my day or righten my world.
Please keep reading our posts and learn from our lives....its okay to be angry but there are more productive ways to work thru it. Get involved with the local MS society- youd be amazed at how good you feel by giving of yourself to people to which it really makes a difference!
Nikki
mitch512u
01-14-2008, 01:34 PM
I had just returned to church, after 30 yr. absence, when I was dx'd with MS (some 3 yrs. ago). Although I am still ambulatory I have issues that have changed my life. I may get worse, who knows. I don't much worry about it though. It is because of my belief in God that I am able to accept my new situation. If I didn't have that to hold on to I know where I would be...back to the drinking and drugging that I had been doing for so long. The big thing is that my friends see me dealing with this in an unexpected manner, and I believe that through this they will be lead back to the personal relationship that God wants with all his children. We are here only temporarily, our rewards won't be found here, they wait for us elsewhere.
I hope you don't allow your bitterness to taint your relationship with your father, he sounds like a fine man. Learn from him.
Mitch
I hope you don't allow your bitterness to taint your relationship with your father, he sounds like a fine man. Learn from him.
Mitch
sassy8
01-14-2008, 02:20 PM
It's very hard to watch someone that you love become disabled physically. Your watching from the outside. On the inside your father has so much going on, because he is so positive and he has faith in his God. Talk to him and really listen to what he has to say. He has a very different view of his situation then you do. There are people with no disabilaties that are very broken and have no hope in life and wish to die. Any chronic illness can be looked at as a challenge not an excuse to give up. Most people with ms choose to fight and help support others in that fight. We need you and others as volunteers. For some faith in the lord has helped greatly. He never lets us down. Again look on the inside not just the outside. hugs to you:)