Scared and Alone

[Trevor49]

I was hoping that I had dermatomyositis but I knew that wasn't causing my weakness or muscle wasting. It was a pretty easy diagnosis for the neurologist even though I still had some muscle strength. My arm muscles were just hanging there. I avoided going to the doctor to hear the news but my hands and fingers were getting go the point I couldn't move them and I've last so much weight and my mouth and face are now getting worse. I've left everything so late while waiting for huge doctors go determine if it is dermatomyositis .

Weeks of wasted time in the hospital and nie weeks bed ridden at home deteriorating. I can still walk and eat but have swallowing issues. I have a 16 year son that I haven't told yet as he thinks I'm going to get better. No one in my family knows yet as they think I will be fine. My wife doesn't want yo be a caregiver and I don't know whist to do. I don't want to a financial burden on everyone. I'm so much in denial and just getting weaker. Knowing I had but not being told was I guess the only thing keeping me going.

Now I'm lost and will tell everyone but I don't want yo live like this. I was looking at doctor assisted death but in Canada it will not happen until late 2016. I have insurance set up and want my wife and son to have a good life. My life is over. I'm progressing very fast but have very little breathing issues to date. I don't want to wake up. I can walk and speak ok but that is getting worse. I dealing with this pretty much alone and I didn't ask for this. I look at my arms and shoulders and it looks skinny with skin hanging there.

I don't wAnt yo be here and I will probably facing fast whatever they intend to do as I go back on Tuesday to discuss a plan as I left everything late and my condition has only gotten worse. I looked at the Steven Shackel story but I don't knoW if it is bs or has merit. At this point I'm looking at ways to make my life just go away but I'm a coward in all of this. I don't want to be paralyzed I will let me reach that point but I don't know whst to do.

My son is going yo be crushed as him and i are so close and love each other so much. My wife loves me but I know she won't help me with this as she told she doesn't want to be a nurse. I have paw coming twice a day to help me get dressed and shower but that won't help me in the later stages. We have go sell our house and my wife blames. Me fir everything. This isn't fair. I don't know why it took the doctors to figure this out I told them it wasn't dermatomyositis but they just continued with that. I'm sitting here and thinking of ways to get out of this mess. I can barely move my arms. There is no answer to any of my issues only doom.

 

[Alana]

Hi Trevor,
I'm so sorry to hear all the pain you are feeling right now. And I mean mental pain. My hubby was told in May this year and it's been a rough road so far trying to understand WHY US! He has a teenage boy of 14 and they are close as well. Our son knows and it has been awesome as they really do more together now than ever and I see that bond is strong. My hubby's arms are losing strength too and his fingers have lost the ability to grip certain things. He types with his two pointer fingers as they are the only working ones. I am not in his head so I don't completely understand the frustration he is feeling.
Whatever you need to do for yourself is the right thing for you, I just wanted you to know that this forum of people are very caring. We are hear to listen not judge.
I do hope that you can reach out to another family member and share your heavy heart and feel supported.
Blessings to you Alana

 

[lgelb]

Trevor, do we understand that ALS has now been officially confirmed? If so, I am very sorry.

Please be honest with your son so he can understand what is happening and come to terms with it so your time together can have the most benefit for both of you. Your wife is probably still processing the news as well.

From research, about 10% of PALS live 10 years or more, and Steven Shackel may be one of them (I don't have personal knowledge of where/how he was diagnosed to begin with). But there are very few verified cases where the disease has been reversed, which is his claim. As with all PALS sites, I would try to take the best advice for your individual situation from what is offered, e.g. nutrition is certainly important but you have to accommodate your swallowing issues. So you will find advice here that is more customized to that context, recipes for smoothies, soup and pureed meals.

A 16-year old has probably figured out that things are not going well. He needs you and you need him. Give your family breathing room and I think you will find from them and your friends/community, more support than you might expect.

Don't stay "bedridden" if you can walk and talk. Do what you can while you can, reach out wherever you see a hand, and you will find far fewer regrets along that path.

Best,
Laurie

 

[Grace89]

Trevor,
I am so sorry you are having to go through this and you feel so alone. I was recently diagnosed and I know the struggle. As this disease takes hold of our body we are faced with the harsh reality of what is coming and will happen. In my reading and research it seems that most people think that there is no war or fight for us. That we are supposed to take the punches as they knock us down and eventually kill us. I do believe if we are ever going to find a cure for ALS that we as patients can not accept these punches and we can not bow down and allow our lives to slip away. And some may think this is easy for me to say as I am very early in my diagnosis and I still have many abilities. But in this moment I think of the future, I think of a single mom of two girls(my situation) 10 years from now that when diagnosed that there is a cure for her. A cure that is available because 10 years ago ALS patients made a choice not to bow out but to fight and to live longer. I want that mother to be able to tuck her girls in at night, to pull their blankets up and tuck their hair behind their ears. I want her to be able to fix her daughters hair and tie their shoes. I never want her to face what I am and if it means that I fight with all I have and I use all means possible and available to me so that I can give her that, then I will.
Your son will understand and believe me he will help and do all he can for you. My girls are 4 and 7, they already do so much for me. It is very empowering for them.
Please take care of yourself!

 

[Loverly]

Trevor,
I know you are experiencing the worst of the worst right now. I ask you to take heart and reach out to the ALS community for help. Your country has an als organization that will help you with every facet of the transition to your new life. As a person who has suffered with suicidal thoughts all my life, I ask you to ask for get help and reassess before you make up your mind. You can and will still have value for your son and wife, and though it will be in different ways, they still need you.

www.als.ca

That's the URL for the national society. (Take out the extra spaces) You can find your local chapter from there.

It does take a frustratingly long time to get a diagnose. I can sympathize with you in that.

Take care.

Jen

 

[Atsugi]

TREVOR, you said earlier that you had an EMG scheduled for today. What were the results? Did the neurologist give you a firm diagnosis?

 

[poppies]

Hi Trevor, I am so very sorry for what you are going through. Facing the future with ALS is scary enough without having to worry about who will be there to take care of you. This is not your fault. Whatever you do, please don't feel responsible for the difficult choices your family is having to make. The disease is to blame, not you. You deserve love and support from those around you. Speak to your local ALS organisation straight away to find out what your options are as far as assisted living is concerned. Each of us has unique circumstances to take into account so you need to find something that works best for you and your family. As far as your son is concerned please don't delay telling him the full truth. Teenagers are more damaged by secrets than the truth. It will be hard for him to deal with but he will come to terms with it in his own way and time. Please know you are not alone. We are thinking of you and sending you strength to face these very difficult early days.

 

[Trevor49]

Thanks everyone for your kind words of support. I'm still in denial of this and really font want the attention. I went to my sons hockey game yesterday and it was tough getting through the game as my bod head shaking and I feel each day the numbness or whatever it is in my face around my mouth. I did walk to much as when I got home I completely passed out. I don't know what to fo about my butt as it hurts so much I don't have sites on it. I have an appt Tuesday with the doctors . I only get maybe 2 hours sleep per night.

We are in the process of selling our house due to financial reasons. My wife has been doing everything to get it ready. She is so stressed and totally worn down. If I mention that I have als she freaks out and says it Dermatomyostis. I'm starting to feel pain im my stomach as I was on prednisone and still am but getting off it because the prescribed that and omit an for the thought diagnose of derma which might of sped up my symptoms.

I think about this disease 24/7. This is all unreal for me. I cough most if the night or. Clear my throat. I have a hospital bed that I've been in for a couple of months that helps. When I sit in a chair or stand for too long I feel this pressure in my spine and when I sit I get head pressure. The spine stuff started in July this year and got worse each month. I was on methrotriate and I was thinking there was a connected with it. I don't think I ever had dermat as my blood levels were always normal.

Since April 2014 I experienced some weakness in my legs had rash on hands and elbows. Had muscle biosby then and she saw inflammation so I had it. Sept 2015 comes around and losing weight , weak as anything, losing muscle mass. Can't move that well . Go to neuro in Sept. She says no als as I have strength. October in hospital out on different drugs blood work normal have anothe EMG by a different neuro and looks on paper I have derma does test and says no als. Try ivg and different drug doesn't work . Attending was going to send me to als Specalist while in hospital but other neuro said not necessary. They discharged me and set up appt with neuromuscular Specalists where he was suppose to do muscle biospy.

Doctor was checking me before leaving hospital and she finally sees the twitching going on in my left shoulder but says it is ok but I could see her concern. But she discharged me. A week later I go to the third neuro and this is where I thought I would get the diagnose as it was completely visable the muscle loss in my arms legs and shoulders. I go there and the lady doing the nerve conduction test looks at me and comments on the muscle loss. She dies the ncv and she is surprised it is normal. A resident comes in and does the regular reflex and stuff . I did ok except arms above my head and my fingers . The Specalist comes in and sticks one needle in my arm and says your inflammation is gone you have a 98% of recovery. I said what about all the other muscles and weakness he said derma does that. Sends me home .

The reason I'm telling you this is my wife was with me at all of these appts. 2 weeks ago on Thursday I go to th neuro I usually go to. I passed some of the regular tests. The ncv was normal but the EMG wasn't. He saw difference in the waves compared to last time. Again he says I don't think it is als. My symptoms get worse and see that neuro again. He says no way my symptoms are worse in two weeks and I say they are. This time I have no power in my hands and the twitching is more promounced. It says based on my continued weakness and loss it is als. My wife isn't with me. She spent believe me because of passed results . No one believes me they think I'm crazy. That neuro is sending me a Specalist to get help.

I haven't told my son but my wife is going toy family doctor on Tueaday as he has to set up everything and then she will learn my fate. It has been 6 months with me losing muscle , weight, weak as anything to get to this point. I'm still not getting the proper help. Requir to treat the issues I'm having. Right now everyone thinks I'm going to be good and I try to tell them what has happened they think I'm crazy. Next week will clear up things but I'm in rough shape now and starting to losing voice and chewing is harder and my stomach is so upset. I can eat oawal I'm the morning after that I no appetite .

Sorry for the long story but this is what is happening with my life and I'm in such term oil . I don't know how all of these neuro couldn't figure it our and give me hope. I was expecting a diagnose a long time ago . It is completely crazy what has happened.

 

[LifeEnthusiast]

I am struggling to read this without paragraphs. In fact, trying to is given me a blinding headache. But the last number of lines say that you haven't been diagnosed yet; that the neuro says no to ALS and your strength tests are fine. Maybe I am misreading.

Nonetheless, your appointment on Tuesday should give you some more definitive answers. I do hope that they can find a cause for your problems and that it is not ALS. Wish you the best for next week.

Cee

 

[Trevor49]

Sorry I have a hard time typing. Yes I was. Diagnosed . I haven't been set up with a plan. . I have to the clinic. I'm really late in the process ad this had progressing snd I didn't geg a diagnose. Therefore I'm suffering in many ways . I just didn't wsntbyo wake up at night.

 

[LifeEnthusiast]

I have reread this and I don't see a diagnosis. I see an appointment with a specialist. Clearly, something is going on and you need to get it sorted. There is a chance I am misreading what you've wrote. But even in your last post, first say you were diagnosed and they you say you weren't.

I am by no means trying to be argumentative. I'm just feel I'm missing something here. My best suggestion is get your family doctor or specialist to make a referral to Sunnybrook's ALS/Neuromuscular Clinic. They'll be able confirm (or a not) a diagnosis.

Maybe others will chime in here.

Cee

 

[Trevor49]

I was just explaining what has occurred up to now. My neuro did diagnosed me. It wasn't hard for him to do as I now have little strength and getting worse . I'm in a state of fear and just don't know what to do. I Kay in bed most of the day and by myself . Im so scared and I want to go to slept and not wAke up. When I do sleep
My body gets weaker and I cough all the time. I believe in god and I can't believe this happening to me. I don't want to go through it. I have no musvles left on my back. My chin is start twitching now and lips are numb. I can't deal with this

 

[LifeEnthusiast]

I am sorry to hear that. I therefore can't stress enough a second opinion at an ALS clinic. Sunnybrook is a reasonable drive for a second opinion. Once a second diagnosis is confirmed, the ALS clinic will offer you the assistance you need for a more comfortable life. I am hoping more knowledgable members will chime in.

Best.
Cee

 

[notBrad]

Hi Trevor,

Sorry you're going through all this. As others have said, get a second opinion so you know what you're fighting.

If it isn't ALS think of the time you're wasting while it could be cured or treated.

If it is ALS then I have the following advice; don't waste another minute laying in bed in fear waiting for death, it will come soon enough. You believe in god so there's nothing to fear (actually there's nothing to fear even if you don't but that's another discussion) and you will regret not spending every available moment telling and showing you wife and son how much you love them and spending time with them. What you're going through at the moment is temporary and will be over soon enough. Channel your fears into giving your son (and wife) the love and memories of you to last him a lifetime.

Take care,
Brad