pattysfriend
New member
- Joined
- Jun 3, 2011
- Messages
- 8
- Reason
- Friend was DX
- Country
- US
- State
- IL
- City
- Little place
I have been lurking on the forum for a week or so, for reasons of finding out the latest thinking on ALS; its possible causes, latest treatments, and research. I have learned a great deal and I thank you all for how candid you have been here on this forum. So I, too, will be candid with you.
My best girlfriend, going back to childhood, comes from a family with familial ALS. I have known her since I was in the first grade. We grew up together in the same town, went to the same school til graduation. We were in each others weddings, had children close to the same ages, got divorces and shared other notable milestones in life. We have always been there for each other, supporting each other in the good times and bad.
I am close to the family and know of quite a few anecdotes regarding the course and manifestations of ALS.
My friend's father died with ALS in 1982 at age 60. At the time the 5 siblings were told that chances were very slim that it was a genetic disorder, even though her dad had a sister who had and later died with Parkinsons. I am not sure if a connection between some types of ALS and Parkinsons was know about then, though, and I am not sure that the family knows about the studies on this even now.
Even though the family was told that this was most likely not genetic, there was a great deal of fear concerning ALS. For 30 years my friend and her sister were both very frightened that they would someday develop ALS.
My friend began to suffer from very deep depression and even went to the Mayo Clinic for evaluation. She told me that they had diagnosed her then with very severe PMS (pre-menstrual syndrome). This was in the late 1980s, and we are both 1955 babies.
I believe it was around 2002 that her sister, 5 years older than we are, woke up one morning with one side of her face fallen in paralysis. She was given a diagnosis of Bell's palsy. But the paralysis never subsided and by late 2004 she was diagnosed with ALS. This sister supposededly did test positive for Lyme disease and also tried another alternative therapy in Mexico. She died at age 55 in 2006.
This was a hard blow to everyone because now it appeared that is could be familial, but yet there was still this question of was it Lyme?
A couple of years ago, I got behind my friend's oldest brother at a convenience store. He didn't see me and I noticed he was shaking severely with tremors, the kind you see in Parkinsons. I related this to one of the cousins in the family and asked her what was going on. She knew nothing about it, nor had observed it, as they were estranged. A few months later I saw him again, and he was not shaking this time. But then the cousin called me over a year after that and said she had observed him shaking also at a family dinner.
Last year, the second brother of the family was having weakness in his hip and leg. He went to Mayo and was diagnosed with ALS. He does not believe they are right about this because, he says, he's had problems with that hip for years. Before his diagnosis, though, he was reliving the death of his 2 year old daughter who had died over 30 years ago. He was constantly reminding his friends and family that they had known this little girl, and talked like it had happened only yesterday. It was a very sad time when that happened and I doubt that I, too, would ever get over something like that, but the way he kept going on about it did not seem quite right, either.
Over the years, my girlfriend has continued to suffer with severe mental suffering and has been on every antidepressant in the book in addition to Seroquel, Buspar, and Lithium. She was diagnosed OCD, I am guessing, atleast 10 years ago. A few years ago she also received a diabetes diagnosis. She went through menopause a full 10 years before I did and stated that hormone replacement made her feel better than anything else. However, the doctors discontinued these for her and refused her anymore of that kind of treatment. She has even tried electroshock therapy, 8 or 9 years ago, in fact, a couple of tries at this. All to no avail.
So over the past 2 years her weight has dropped from 110 to 76 pounds. She has lost hearing in both ears and has hearing aids, but refuses to wear them. She has lost all of her bottom teeth and now the top ones are beginning to break off. Everywhere she went, she carried a 2 liter bottle of Diet Pepsi and all anyone ever sees her eat is candy bars and brownies. She continued with the psychiatric medications, but was not monitoring the diabetes. I observed her a couple of times showing Parkinson type tremors, but they stopped within minutes, and I thought - well, its either her medication or I have made her nervous over something. Now I think I am noticing that she does not use the tips of her fingers when she grasps things, and that she uses both hands to pick up a glass. And she is nothing but skin and bones and a couple of people in town ask me - what is going on with her?
I had debated and debated with myself. Was this only her business, or was it mine, too? I reached out to one member of the family, saying I am really concerned that she is malnourished. Please make sure she gets some help. That was before Christmas. To be fair, they did take her some Boost, but she continued to drop weight.
By late winter/early spring of this year, she was repeating herself, asking the same questions of me 3 times in the course of an evening. I couldn't tell, was she not hearing me or what?
Finally, about 6 weeks ago, I approached a couple of her other friends, and through mutual support one of us worked up the nerve to approach her son about her condition. He had to fly her out of state to his brother - but she is now in the process of being tested for every cancer that can be tested for.
She had pneumonia on top of this and the doctors were very concerned about lung cancer since she does smoke, but so far, no cancer diagnosis! But her cough has not responded to antibiotics. In addition to this, I am being told that her blood sugar was in the 500 range and oral meds have not brought it down.
My God, my God....
Through all the course of my reading up on ALS, (because I am so very afraid that it is here and I am trying to prepare myself for what lies next), I just yesterday came across quite accidentally an article on REM behavior disorder and something to the effect that this can be an indicator decades in advance of a neurodegenerative disorder.
We used to do a lot of sleep overs when we were teens, and I remember as far back as when we were 18 that she was acting out dreams...then one of her sons informed me just tonight that she sleepwalks.
Has anyone else had Rapid Eye Movement Behavior Disorder prior to an ALS diagnosis?
I am sorry that this has been such a long introduction, but I could write much more, and it is for posterity's sake that I am recording these observations here.
I believe that a dementia is setting in. I, and her other friends, are afraid she will get angry with us and cut us off if we do the wrong thing. She's done that before. I cannot share my deepest concerns with her sons because they will be devastated if this does turn out to be ALS and while everyone is thinking about it, no one will say it. Her son did tell me, though, that he put Lou Gehrig's disease down on her history, but as far as I know, all tests are pertaining to ruling out cancer. And many symptoms could be because of the diabetes. Now she is homesick and wants to come home, but no story is ever told the same way twice by her!
Sometimes I wonder if all of this could possibly be something else, since the original diagnosis was made clear back in 1982.
What do I do to help in anyway I can? I do not know how to handle this and want so desperately to help her, without insulting her or wounding her pride.
Thank you for listening to me and for any suggestions you might have.
My best girlfriend, going back to childhood, comes from a family with familial ALS. I have known her since I was in the first grade. We grew up together in the same town, went to the same school til graduation. We were in each others weddings, had children close to the same ages, got divorces and shared other notable milestones in life. We have always been there for each other, supporting each other in the good times and bad.
I am close to the family and know of quite a few anecdotes regarding the course and manifestations of ALS.
My friend's father died with ALS in 1982 at age 60. At the time the 5 siblings were told that chances were very slim that it was a genetic disorder, even though her dad had a sister who had and later died with Parkinsons. I am not sure if a connection between some types of ALS and Parkinsons was know about then, though, and I am not sure that the family knows about the studies on this even now.
Even though the family was told that this was most likely not genetic, there was a great deal of fear concerning ALS. For 30 years my friend and her sister were both very frightened that they would someday develop ALS.
My friend began to suffer from very deep depression and even went to the Mayo Clinic for evaluation. She told me that they had diagnosed her then with very severe PMS (pre-menstrual syndrome). This was in the late 1980s, and we are both 1955 babies.
I believe it was around 2002 that her sister, 5 years older than we are, woke up one morning with one side of her face fallen in paralysis. She was given a diagnosis of Bell's palsy. But the paralysis never subsided and by late 2004 she was diagnosed with ALS. This sister supposededly did test positive for Lyme disease and also tried another alternative therapy in Mexico. She died at age 55 in 2006.
This was a hard blow to everyone because now it appeared that is could be familial, but yet there was still this question of was it Lyme?
A couple of years ago, I got behind my friend's oldest brother at a convenience store. He didn't see me and I noticed he was shaking severely with tremors, the kind you see in Parkinsons. I related this to one of the cousins in the family and asked her what was going on. She knew nothing about it, nor had observed it, as they were estranged. A few months later I saw him again, and he was not shaking this time. But then the cousin called me over a year after that and said she had observed him shaking also at a family dinner.
Last year, the second brother of the family was having weakness in his hip and leg. He went to Mayo and was diagnosed with ALS. He does not believe they are right about this because, he says, he's had problems with that hip for years. Before his diagnosis, though, he was reliving the death of his 2 year old daughter who had died over 30 years ago. He was constantly reminding his friends and family that they had known this little girl, and talked like it had happened only yesterday. It was a very sad time when that happened and I doubt that I, too, would ever get over something like that, but the way he kept going on about it did not seem quite right, either.
Over the years, my girlfriend has continued to suffer with severe mental suffering and has been on every antidepressant in the book in addition to Seroquel, Buspar, and Lithium. She was diagnosed OCD, I am guessing, atleast 10 years ago. A few years ago she also received a diabetes diagnosis. She went through menopause a full 10 years before I did and stated that hormone replacement made her feel better than anything else. However, the doctors discontinued these for her and refused her anymore of that kind of treatment. She has even tried electroshock therapy, 8 or 9 years ago, in fact, a couple of tries at this. All to no avail.
So over the past 2 years her weight has dropped from 110 to 76 pounds. She has lost hearing in both ears and has hearing aids, but refuses to wear them. She has lost all of her bottom teeth and now the top ones are beginning to break off. Everywhere she went, she carried a 2 liter bottle of Diet Pepsi and all anyone ever sees her eat is candy bars and brownies. She continued with the psychiatric medications, but was not monitoring the diabetes. I observed her a couple of times showing Parkinson type tremors, but they stopped within minutes, and I thought - well, its either her medication or I have made her nervous over something. Now I think I am noticing that she does not use the tips of her fingers when she grasps things, and that she uses both hands to pick up a glass. And she is nothing but skin and bones and a couple of people in town ask me - what is going on with her?
I had debated and debated with myself. Was this only her business, or was it mine, too? I reached out to one member of the family, saying I am really concerned that she is malnourished. Please make sure she gets some help. That was before Christmas. To be fair, they did take her some Boost, but she continued to drop weight.
By late winter/early spring of this year, she was repeating herself, asking the same questions of me 3 times in the course of an evening. I couldn't tell, was she not hearing me or what?
Finally, about 6 weeks ago, I approached a couple of her other friends, and through mutual support one of us worked up the nerve to approach her son about her condition. He had to fly her out of state to his brother - but she is now in the process of being tested for every cancer that can be tested for.
She had pneumonia on top of this and the doctors were very concerned about lung cancer since she does smoke, but so far, no cancer diagnosis! But her cough has not responded to antibiotics. In addition to this, I am being told that her blood sugar was in the 500 range and oral meds have not brought it down.
My God, my God....
Through all the course of my reading up on ALS, (because I am so very afraid that it is here and I am trying to prepare myself for what lies next), I just yesterday came across quite accidentally an article on REM behavior disorder and something to the effect that this can be an indicator decades in advance of a neurodegenerative disorder.
We used to do a lot of sleep overs when we were teens, and I remember as far back as when we were 18 that she was acting out dreams...then one of her sons informed me just tonight that she sleepwalks.
Has anyone else had Rapid Eye Movement Behavior Disorder prior to an ALS diagnosis?
I am sorry that this has been such a long introduction, but I could write much more, and it is for posterity's sake that I am recording these observations here.
I believe that a dementia is setting in. I, and her other friends, are afraid she will get angry with us and cut us off if we do the wrong thing. She's done that before. I cannot share my deepest concerns with her sons because they will be devastated if this does turn out to be ALS and while everyone is thinking about it, no one will say it. Her son did tell me, though, that he put Lou Gehrig's disease down on her history, but as far as I know, all tests are pertaining to ruling out cancer. And many symptoms could be because of the diabetes. Now she is homesick and wants to come home, but no story is ever told the same way twice by her!
Sometimes I wonder if all of this could possibly be something else, since the original diagnosis was made clear back in 1982.
What do I do to help in anyway I can? I do not know how to handle this and want so desperately to help her, without insulting her or wounding her pride.
Thank you for listening to me and for any suggestions you might have.