sad news that has me very scared and depressed

[Patsy]

Hi everybody;

My husband Stephane has decided that he is totally burned out and that he no longer loves me. So when and if I can find the necessary staff for 24 hour nursing care, until such time Stephane will stay and assist in my care; otherwise I will have to be admitted to a LTC facility. Anyway we are starting to do the ground work tomorrow. The boys are heartbroken and want me to stay home, so we will work very hard to meet that goal. They will stay with me as much as they want, the same thing with Stephane once we know where we are going. I think that it is for the best for everyone, as being cared for with resentment and anger doesn't foster anything positive. For Stephane couple counselling was not an option for the last 5 years. So I have had to resign to the fact that we have irreversible damage that only 2 can fix and not me alone, because I have tried but it is not doable alone. I have to think of my health now and focus on my children, rather than wasting my energies on fixing stuff that I am powerless over. A.L.S. makes me powerless in many aspects of my life and I can't allow someone to make me powerless in my own marriage/pursuit of happiness.

I am still reeling from the sudden change and very sad and upset but as my mother says "It could the best for everyone. ", you never know. All that I know is that I deserve to be loved in a way that builds me up and not down, so does Stephane!

Regards;

Patsy

Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)
Tough times never last, tough people do. -Robert Schuller

[upila]

Dear Patsy,
I read and re-read your post and many thoughts came through my mind - yet, I find myself lost for words. Without anything further, I send you my warmest thoughts tonight.
Upila

[A Daughters Love]

Dear Patsy,
I to am at a loss for words. All I can say is hold on tight to the love of your two boys and draw your strength from the love the three of you share.
My prayers are with you.

[Al]

Hi Patsy. I am very sad reading your recent post. You have been a great help and inspiration to others on this forum and others that you have participated in. Nobody deserves this and least of all someone in your position. We sometimes can't change peoples feelings and must accept things as they are. You have shown yourself to be a fighter and haven't given up. This is just another test put before you. You will come out of this ok. I am sure. Hopefully your family and friends will rally around you and help out. We are here in spirit for you. Know that you are loved by everyone on this forum for who you are. A friend with ALS.

[dana]

Patsy,
I can't even imagine the betrayal and heartache you are probably feeling. It is tough going through this disease, and now to worry about your marriage... Just know that your children will love you no matter what. I don't know your situation, but I do know that if that was happening with my mom and dad, I would be there to support my dad (who has the ALS/Lymes) in any way possible. You will not be left alone in this, I am sure. As for your husband, I am sorry, but it doesn't sound like great timing on his part. I am a firm believer in "sickness and in health" but some people choose to take the easy way out when faced with trials and tribulations. You have been more than helpful with sending me information any time I ask, and the way you fight is an inspiration. You are a well educated woman, and you will be o.k. Lean on your sons and don't be afraid to ask for help. That is what your kids are there for. I know that if my dad needs anything, I will do my best to help him in any way possible. I am so sorry you have to go through this on top of everything, but hold your head high. You are a strong woman, and you can win this battle. I will be praying for you.
Dana

[Granny]

Dear Patsy,
Like everyone else, I find it hard to know what to say. But, I will say that I am thinking of you and praying for you. Your wise help on this forum is something that we all have been helped by.
Please keep posting, hang on tight to the love of your boys and your family.
Love, Leah

[TBear]

Hi Patsy:

I am saddenned and disappointed by this development. Although you and I have discussed this situation privately, I believe that all should know that what your husband is doing, while relieving himself in the short term will, no doubt, haunt him in the long run. I suspect that the halo of sainthood is fading even now.
Good luck in your new digs. I hope that, in your next stage of care, you will be safe and treated with respect and dignity... and have the time and opportunity to dispense your regular and valuable advice on this forum!

CHeers

T.

[Theresa2004]

Patsy, I don't know the circumstances T-Bear refered to, but I am sorry. This decision for what ever reasons will come back to bite him.
Honestly, when I read your post, I was really pissed off. He has two boys on top of it. I don't pretend to think this is easy for any caregiver at all, I admire each and every one of them, but there has to be an alternative.

[Carol Deboer]

Hi Patsy,

I know that I have been on the forum much latley, however, like everyone else here, I was shocked to here about your situation. I honestly do not know what to say But, I will say this. He will one day regret his position about leaving you. I know caregivers all burn out, I did, but picked myself up and kept on going He obviously does not have the strength or will to do so. That is too bad. I feel for you now. I hope that you will be alright, as if you do not have enough on your plate! But, for reasons unknown or known these things do happen, and as everyone else said, keep your head up and pray for strength during the next few difficult months. I will keep you in my prayers my dear friend, and I know that your will be alright.

STAY STRONG !!!!!

Love, Carol

[trisha p]

Patsy,
There is nothing really that I can say that others have not already said above. I too am shocked and believe he will regret this. I know my sister-in-law is burned out but she is sticking by my brother through it all. Know we are here for you as you've been here for us and we love you. You will get through this - hold on to your sons and the love of those around you. I'll keep you in my prayers for extra strength and comfort as you adjust to this change.

Take care,
Trish

[rcharlton]

Hi Patsy,

You have been on my mind a lot since I read your post. I can't even imagine your sense of loss and, I'm sure to some degree, betrayal.

I think the only response one can give in a situation like this is a hug. So just imagine you are getting a big group hug from everyone here.

As a PALS, I'm sure you have learned to adapt to whatever garbage life throws your way - and end up a stronger person at the end of the day...and from your post, it sounds like you have the strength and right mental attitude to get through this crisis - as all of the other past crisises ALS seems to invite - as tough as the next little while may be.

Just remember that you are never alone, the world will keep turning, the sun will always shine and the songbirds will be back in the spring (I hope that didn't sound corny - but I always get comforted thinking about those types of things when I am really depressed).

Take care.

Richard

[terri]

Hi Pasty,

I too am sorry this has happened. I wish I was next door to you so I could help. I'll be thinking about you.

[wewillbeatthis]

Patsy,

I am so sorry that on top of the ALS you have to now deal with your marriage ending. I would have to agree with many that have said this does not show a strong man.. In fact one day he will turn around and say what did I do. It is sad but it takes situations like this to happen in someones life to learn who is true and who is not. You have been winning a fight with ALS for 7 years and I have no doubt that you will continue to win this fight for many more. Allow yourself the time to morn, the moments of tears, dissapointment, and whatever else you have to let out. Just don't remember that at the end of each and every day to look in the mirror and say I am a fighter and I will overcome this as well... There is no doubt in my mind and from the things I have read and the good and bad days I have seen with my dad this disease is all about mind over matter..... Please Patsy don't let this situation get the best of you.... You will overcome this and they will find a cure.... You will be on top of the world and all of a sudden someone will be knocking on your door and this is when you continue to keep that dignity and fight you have... Keep your head hi and WALK on BY!!!!!!

Take care and GOD BLESS....

Jen

[leslhart]

Patsy,
As we live with this disease, I think most of us find a calm strength that we never new existed, at least I did. Some friends disappear, some stay or new ones step up to the plate. Some family is there, some not as much. What I have come to learn is that I don't waste my time worrying about the people who can't deal with me or what this disease has done to me. Whats important is the people who are here, know that I am still me, and except that. Find that calm strength and try not to worry about things you have no control over. We're all here, we're all in the same boat, this is what this forum is for.
Les

[cbrink]

Like everybody else I have read your post several times, the responses as well. I have been on this site several times over the past 2 years, that is when my husband was diagnosed with ALS. In the past I have always been an observer, your post and the responses compelled me to "participate".

I know how wonderful it is to get all the support and good wishes you are getting from all the PALS, that is great! But you need care, 24-7 of it, has anybody helped with that? rather than point the finger at your husband? It is always so easy to play the blame game, easier when you do not have all the facts... nobody can ever share that, only you and your husband know all the details and I am sure your versions vary.

I am sure your husband has and will go through so much guilt, maybe he felt he could no longer give you the care you needed, without the resentment. It is not easy for anybody! I can speak for the caregiver it gets very overwhelming! especially if there is no other support...

Honestly the idea has crossed my mind, how wonderful it would be to have peace of mind, for my children especially, things get very hectic, my children are 2 and 9. My husband was diagnosed 2 years ago, I believe that he gave up on that day, he stopped participating as a father and husband and has not left the house except to see a doctor and that is not even easy to do.

He was not willing to accept outside help, just recently he accepted shower help... which I told him I just could not do anymore (he is a big guy 6'-4").... my version... he is being very sellfish, he is very unhappy, he takes out his frustrations on me and the kids, he has become very demanding, at times very childlike, he has withdrawn from everybody....

His version... I am sure I am not the loving doting wife I used to be, I do not get dressed up and made up anymore, I do not spend as much time with him, just sitting and talking, I am not as patient as I used to be, ..... I am sure there is more.....haha


Count the things you are lucky to have, you must be a wonderful person, it seems you have touched the lives of many on this site alone! You have your mom, your children... you have your life, although it may be different than what you expected.

One thing for all you PALS to remember, a thought that has crossed my mind several times when reading your posts

By just being on this site you are a PALS with a different frame of mind, you are participating in LIFE... have any of you wondered how many PALS are alive but do not participate in life? how many just turn off?
How many of you thank your caregivers on a regular basis?

and tell your family how much you love them?

How many of you realize that your spouse/caregiver carries all your burdens and that of your children, friends and family? Only to get demands and critisism from all???

How many of you go the extra mile to do something that you used to do, that you can still do although it is hard...? (something that you do when others are watching)

How many of you make sure that your loved ones will live on without the guilt?



Yes what you are going through is difficult! Your loved ones go through it as well, they see all that you go through, they feel for you, they pick up all the peices.. they try over and over to make things barable for you and for the rest of the family...

remember when you point a fingure there are at least 3 pointing back at you!

so, I end this in a challenge... whenever you have a chance:

Kiss your loved ones, hug them, cherish them, show them your appreciation and most of all be happy that you can do that!

[upila]

Hello,
Perhaps by posting here you will find some relief - as I am certain everyone here DOES understand you, be it a PALS or a caregiver. As long as we are all honest with ourselves and within ourselves.
True, everyone here is participating in a dialog, which often takes many turns. In reading your outpouring emotional post, I can not help but feel the only support you will get would be from here. It would be presumptious of me to try and speak about your husband. People deal with disaster in such diferent ways. Do what your heart tells you you must. Feelings of hurt and sadness most often give way to anger, if not tended to. The road ahead of you is hard; the way your husband is looking at it - you still have a road to traverse on - for him, only a dead end. Takes a very strong person to overcome that feeling of futility, or very loving. And often, time brings about changes.
To use Carol's words: "Stay strong!"
Upila

[Patsy]

Thank you very much for everyone's kind words of encouragement. My children 10 and 13 seem to be adapting well to the 2 separate home situation. We will have some counselling for our broken family.
My nurses have been working overtime and training new staff. However we are still waiting for the insurance to approve/provide 24 hour nursing services because the public Healthcare system can't fulfill the 43 hour/week of nursing services that I am approved for. In the meantime I will have to be admitted for respite care for the Christmas holidays to give my nurses and parents a break. I am terrified by this but cannot really talk to anybody about it because I don't want to make anybody feel guilty!
My husband had become very aggressive in my care for the last year/months. He is a cop and would only be this way when no one could witness what he was doing. So the person who posted that challenge; it is very difficult to be loving or thankful when he slams your head in the mattress because I needed my BIPAP mask off to get pain medication medication for my stomach, made me so nervous I had to take sedatives, ... continually made threats, motioned in the intent to hit me, lied and ignored me; being cared for with so much animosity and resentment is/was too much for even a tough cookie like me.
My family feel that he is not honest about his intentions and all suspect that his ultimate plan is to set things up so that I have to placed in a Healthcare institution. Unfortunately I fear that looking back that he was planning this for a long time. His family has been encouraging him, saying that 7 years was enough of caring for me. They had even taken life insurance policies on my life right after my A.L.S. diagnosis in '98, I guess I was not dying fast enough for them to cash in! Family dynamics were never never healthy in regards to me, I was not what they wanted for their son. \Anyway I am thankful for what I have and take it day by day! I will keep your posted.
Patsy

[cbrink]

Dear Patsy,

I did not target my response at you, as you may notice my first concern was had you found help. Nobody should ever be in an abusive relationship, and I believe you will find that you are better off without that, I am very sorry if I came accross as "harsh", that was not my intent, I was just hoping to make people think, rather than wait, and if just one person turned and thought yeah, it has been awhile that things have been a little crazy and out of hand, and if they just took that one step to rise above it all and make a choice to see the good or do one little thing that even makes that moment better, for themselves and their loved ones.

I keep telling myself it could be worse, my children are healthy and overall happy.... This is the one of the most difficult things a person can go through, as if the disease itself is not bad enough then comes all the emotional "STUFF" it is very difficult, there is no magic pill! But intent goes a long way.

I sincerely wish you the best.

[Patsy]

cbrink;
I understand what you're saying and I am so emotional right now that I took your comments the wrong way. Sorry!
I am finding that what my husband led me to believe that I was so terrible and alone, was not true! My family and friends have been a tremendous source of loving support.
My only fear is that one day my boys will ultimately discover the truth about this situation and I pray that it won't affect their relationship with their father!
I am very blessed being surrounded by a great support system despite my present situation!
Patsy

[Cambridge]

Patsy I don't know why these horrible things happen or if there is a purpose to all things..but things just are and we cope with what we have and adapt as best we can. You are a tough cookie and a tribute to your kids. I'm sure you did the best you could raising them, and don't stop now. Kids see much all the ways up to that age and they will not forget the time you spend with them now and moments from the past.

I told my mom 54 before she died from ALS that she didn't have to worry about dying because she will always live on through me. I know that I have grown 10 fold from all this and I will always remember how strong she was to face such adversity. Know that your kids will see and grow from your strength too. That's something that can never be tarnished by what others my say.

Do all you can do now! Think smart cookie, write them letters, put your people to work. Santa's checking his list make sure you go over yours. Are you forgetting anything? You can still put things into plan.

- Ben 29

[Patsy]

I am back home from a 2 weeks respite care stay in the hospital and it was not a bad experience. During this time my boys unfortunately have come to realize their father's lies and manipulations, while I was away. I have have told them that I could not control their father or what he says or does. There is another woman involved and they are very upset about that.
I have been so stressed out with all this, my nerves are frazzled. Thank God for sedatives.
Patsy

[Granny]

Hi Patsy,
It was good to see your post. You have been on my mind prayers since your last posts.
It is good that the respite care was not a bad experience, at least that is one positive thing!
You cannot be responsible for what your husband does, I know how hard it must be on your boys, but what a strong, loving mom they have.
Love and prayers,
Leah

[dana]

Patsy,
You sure have had a lot on your plate. I know you are probably physically and emotionally drained. Like I said before, I don't know your situation, but to me, your husband sounds like the weak one (and you are the person with the illness)!! Keep focused on your boys. They are very lucky to have you for a mom. I hope they see right through your husbands decisions.
Dana

[wewillbeatthis]

Patsy I am so sorry that you have to go through this while dealing with this disease as well. I agree 100% with Dana your the stong one and he is the weak one... Your boys will figure all of this out in time. Stay focused on the boys, your health, and you will overcome all of this. You are and will continue to be in my thoughts and prayers.

Jen

[A Daughters Love]

Hi Patsy,

When God closes one door he opens another. Don't forget that, it will happen..... I know it! My prayers to you and your boys.

[Patsy]

Hi;
I survived the hospital respite care over the Christmas holidays. The nurses were very good to me during my stay there. It was hard for me nevertheless.
I am home for now with nurses with 24 hour insurance coverage for the nursing services. Although we are just covering the required shifts with the staff that I have now. So if one is sick, I may may need to be admitted for more respite care because of inadequate staffing. So I am still looking for staff. My nurses have been real angels through all of this, to me they're family and not just staff!
my husband is still living with his parents and the boys are being looked after by my family, in-laws and I. The boys are upset by what is going on but are able to talk about their feelings to me and a counsellor. I am getting counselling also.
My husband finally saw his doctor today and finally accepted that he has a mental health problems. So he is waiting 3 weeks to be placed in a mental health rehabilitation institution for a month or two. Hopefully they treat him and that he accepts the diagnosis, so that he can be compliant with the treatment plan. Let's hope and pray that the problem is identified and properly treated.
Anyhow I am very relieved that he is getting help for the sake of my boys.
Keep us in your prayers!
Regards;

Patsy

[rcharlton]

Patsy are you out there? Did you make it to this forum?

Just wanted to check in to see how you are doing.

Been thinking about you a lot.

Take care.

Richard

[marlo]

Patsy,
My heart goes out to you. I think you have brought us all to our knees ,, so to speak. There are no right words to say ,, the best we can do is give you our support and lend an ear. I am sure he is burned out,, but one day he will soooooooooooo regret this. He is turning his back on you now in your time of need. And one day someone will turn their back on him in his time of need. It may be friends, his own sons,, or maybe even God. After all ,, what goes around , comes around. You hang in there,, and feel free to vent here any time. I am alone in my battle with this ALS too. But for me it's because ,, i am widowed,, however,, my husband might very well have did the same thing as yours. We didn't have the best marriage in the world. I live alone for now,, but my children will take care of me ,, when the time comes.

I understand your hurt and anger,,and rightly so,,,, but he is to be pitied,, for his self-centered action,, will come back to haunt him. And i would not want to be in his shoes when it does. God's wrath is far worse than anything we could do to him. So i pray for both of you,, that he has a total change of heart and mind.

Love and Prayers
Marlo

[Patsy]

Update
I am back home from a 2 months respite admission to the Kapuskasing Extendicare for 1 month (I was given a days notice to move to the hospital because of my ALS care needs were too high for the nursing home patient staff ratio and the CCAC placement coordinator thought that I had 6 nurses that was false anyhow not a nice experience) and Sensenbrenner Hospital for 1 month (1 week on active care which was not nice and 3 weeks on LTC which was positive) , with a new group of nurses and a previous nurse from before, our kingpin senior favourite nurse! I am very happy to be back home.

New staff are quick learners, having cared for me in the hospital. Nevertheless a very different environment from the home, their training consisted of a 2 days shift training and none for the night shift, they did a fabulous job ! This is very different from before, where there were weeks of training. Anyhow, the atmosphere is much nicer for everybody here. my brother-in-law is in charge of the staff and my family are intergral part of the reason enabling me to be home! Placement in a Long Term Care institution didn't take place as some ill wishers had planned for me. The boys are thrilled that I am home.

The boys are with their father presently at my in-laws, while we are in the training of the new staff. Once things settle down we, with my family's help, will establish a routine for the boys staying over.

I had not spoken to my husband since January and it has been a lot less stressful for me in the long run. It has been better for the boys because he can not get me upset and there no fighting and no blame Patsy game! If there are problems, my brother-in-law deals with him directly and the boys are more verbal in expressing their feelings when he starts behaving irresponsibly, so I don't have to deal with him for the moment.

The boys are telling me again that they are not impressed by their father's relationship with yet another woman since he has been home from Homewood. I am thankful that she has been nice to my boys and seems to not be mentally ill like the last one !

I am sleeping a lot better since I don't talk to him, I wake only 2 times per night and compared to the 6 times per night when he was home with his abusive sneaky lying ways of the last 3 years. I guess that I didn't realize how much of a negative effect he had on me over the years, many were unaware of what he was doing because he would make sure they were no witnesses to what he was doing to me. So I am slowly feeling better with greater quality sleep and greater sense of security/safety.

I got a sit to stand lift last week that I got to use at the nursing home . It exercises my legs and according to the physiotherapist I am getting stronger with my legs and buttocks; so I am still improving despite everything. I can now focus on myself and physical rehabilitation without any emotional and psychological attacks. I will have a formal assessment by the physiotherapist in a month, I will have to keep you posted.

Regards;

Patsy

Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)

[Al]

Great news Patsy. I have been wondering how you were doing. You just keep on working on those buns of steel and get stronger. Take care. Al.

[Granny]

Welcome back, Patsy.
It was exciting to hear from you, we missed you!
I am glad that you are having some positive experiences and will be able to share some good time with your boys.
Hugs and prayers, Leah

[patclawhorn]

I will pray for you and your family. Don't give up and try to enjoy each day and the blessings that God does give to you. Focus on the good things and know that God will take care of the rest. My name is Patsy also, so we can be sisters. Keep your chin up!! My brother has ALS and he is very fortunate, as he has a wife, daughter, family and friends that support him to the fullest. My brother has something that he puts in every e-mail that he sends. It is the following:
DPPHGLLL* Don't Postpone Praying, Hugging, Giving, Living, Laughing, Loving!

Remember that attitude is everything. Keep up your spirits. I care about you even though we have not ever met.

[ekoozmin]

Patsy--

Welcome back to the board! I had been wondering where you'd gotten to as well! It is so good to know that you are able to keep going after all you have been through. I've been reading about your experiences for the past year or so and I am in awe of your courage and your refusal to give up your dignity. I hope your return home marks a new chapter in your life, and it sounds like you are of to a strong start. Thinking of you!

Al--Buns of Steel--ROFL!!!!

Liz

[dana]

Patsy,
It was very good to hear from you and know that you are all right. You are one tough cookie. I hope you can post again soon and keep us updated on how you are doing.
Stay stong,
Dana

[TBear]

Welcome back Patsy:
It will be good to read your dispatches again. I wish your kids well too.

Al... buns of steel??? Get your tuickets to the Yankees game yet?

CHeers

T.

[Al]

Well I guess I was the only one paying attention. Patsy said her Physio said her buttocks (Buns) and her legs were getting stronger.
Ordered tickets last week. We are up on level 200 along 3 base line. Ryan at Jays said he is trying to put the ALS people on the 3rd base side. We have daughter and son in law coming with us and 2 friends so far. It is hard to get people to commit so far ahead. Are you and the professor coming?

[TBear]

... I got it! Just wasn't sure you could say buttocks on line... if they were simebody elses'
I am planning to go to the game and hope to bring the professor with me. She may have family visiting from England. I think I'll buy two tickets anyway and hope for the best... of course if I put on any more weight I'll probably need both seats! Good to know approximately where you will be parked.
CHeers
T.

[Al]

We are in the 200 level over by third base. Ryan at the Jays office says the seats up there are roomier and padded for us ALS patients whose buttocks have fallen off along with some other strategically placed muscles. Now if you are talking about vehicle parking I haven't got the faintest idea. As close as possible though or I'll have to use the wheelchair. Hope to see you there.

[TBear]

... I meant park your buttox... I'll try and get something over there in the 200 level, although 3rd base will be on the Yankee's side of home!
CHeers

T.

[Al]

Well I asked for first base line and they said they're trying to put us all in one area around third. If we sell enough seats then we will get to sit on the Jays side. Just a tought though. If they are are going to make a big to do about it, Lou was a Yankee, So should we cheer the Yankees on this one ocasion?

[rcharlton]

Patsy,

Thanks for touching base.

You're an inspiration! You're my hero!

Keep on truckin'!!


Richard

[TBear]

... we could I suppose. okay, maybe for 1 inning. Prolonged cheering for the Yankees might cause... better stop there. Too many New Yorkers read this site!

CHeers

T.

[Patsy]

Thank you very much for the words of of encouragement.

No joking around about my buttocks, I have verified multiple muscular improvements from the last 3 years by the physiotherapist. I can't explain why or what caused this but I am thankful. I have been doing various alternative health treatments and did do the Lyme disease treatments 4 years ago and got a feeding tube 1.5 years ago but I can't say for a fact what is responsible for the improvements. I won't get excited until I start walking, then watch out I will get the ALS doctors to take notice because I have had 5 neurologists confirm my als diagnosis and 3 different EMGs. I am a RN and got several second opinions. Don't want anyone start writing me asking me and for what I did, I don't know but I have been documenting everything that that I have done and my neurologist can determine whether or not it was something I did. I will keep you posted .

PatPatsy

[Barbie4]

Hi Patsy:

I am a fairly new member (March 2006). My friend has recently been diagnosed ALS. I am curious about your recent posting on how some of your muscles have improved over the last few years. I know you said don't ask you what you have been doing, but isn't there a way that you could give me a quick overview of the alternatives you have tried.
I am also glad to hear that you have been fighting this for so long. That is a bit of encouragment. Are you a younger P.A.L ? My friend was told that she might progress slower because she is younger (in her early early 40's). I was hoping to be able to give her some hope.
You also mentioned that you have two young boys. She has 3 young children and that is what is devastating her the most. How are your boys handling all of this and if you don't mind me asking, how old are they? Any advice on helping the children deal and understand all of this? Gail has not told her children yet and is in the process of seeking professional help to deal with this. any advice, what worked, what didn't, or watch outs would be greatly appreciated.
Welcome back. You sound like an inspiration to many. It is nice to meet (or should I say chat) with you.

Barb :)

[Patsy]

hi Barb;

I don't want to give anyone false hope and mislead people because I don't know what exactly is responsible for the improvements I am having. I don't know if my improvements are going to continue or what? I want to wait for more improvements and then let the neurologist determine what is going on!

it is no secret what I have tried to treat my ALS. Check my previous posts and my biography on ALS Independence website (I should update it) .

I was 35 years old when I was diagnosed with a 3 and 6 year old sons. read my biography for what I did for my boys.

unfortunately the separation issues from my husband are taking up all of energies and I don't want to risk stress to cause me to backslide!

Patsy

[Carol Deboer]

Hi Patsy,

It is good to hear that your spirits are up. Nice to have the sun shine, than to have the rain pour. It is getting nicer out now so everyone can enjoy the nice warm days that are hopefully ahead of us. Henry also seemed to get stronger in his legs a couple of years into his als. The P/T attributed it to using his legs as his arms, so the strength seemed to be achieved from this alone. However, she did say that his als was of the slower moving, and that to keep his legs strong was of the upmost importance. He did many excerises daily to help maintain this strengh as well. They maintained him for many years and right up until he died he could bear his own weight. How wonderful was that. Anyway, that old phrase, use it or lose it certainly did appear to be the truth in Henrys case. Hope you enjoy continued strength. Good luck.

Stay Strong, Carol xo