A Quiet Sunday

It's a cloudy, cool day today. Won't be doing much outside. My son will be out of touch for a couple of days as he gets settled in to his new place. He's waiting to get the cable and internet connected. MSN is a main source of contact for us so I feel like my arm has been cut off. Hopefully he'll get connected again soon. His relapse seems to be under control. They steroids have done their work but usually, as soon as they wear off, it's only a couple of weeks before the next attack. His neurologist suggested he take a couple of days off work. She doesn't think it a good idea to keep going as hard as he has been. She feels it is stressful enough trying to move during a relapse but to continue working on top of it is a bit much. He has decided to go against her advice and keep working. We can only suggest, he has to manage. He gets quite cranky when we try to push so I have had to learn to quiet my tongue. It's not always easy for me to do. I tend to have a big mouth and voice my opinion. I try. He seems happier and more relaxed now to be in his own home where he has some control and freedom.

A New Chapter Begins

My son has now moved in to a new apartment he shares with two friends. This is a first for him. He had lived with me until Sept. 2008. He has concerns as to whether he can do this with MS such a huge factor in his life. The concern is mostly due to the fatigue and the fact he hasn't been able to work full time. He has a lot of support and I think he will be do just fine. Stress is a huge trigger for relapses. He's been living with his sister and very controlling brother-in-law for the last 9 months. We're hoping that leaving that stress behind will help calm his disease. He's excited to be on his own and knows he always has a room in my home if he needs. I'm excited for him and hope all goes well but worried at the same time. It is likely just typical mom worry when a birdie decides to fly. Today I have tears of both joy and sadness. Joy that he has taken such a big step. I think it will help his morale but sad for the struggle he faces everyday.

More steroids

We have been facing another relapse. Well, not really another. Dustin's neurologist says it's been one continuous relapse again that they can't get under control. This time it has affected his entire left side. He was trying to avoid the steroids as he has taken so much in the 4 years since his diagnosis that he has no calcium left in teeth but to no avail. He started having problems with his teeth about 2 years in to this and the dentist was shocked when he saw that he really had very little calcium left. I can only imagine what it has done to his bones. When it comes to holding off on the steriods, the vertigo gets the better of him every time. It's tough when he vomits every time he moves his head. I remember the first time he had the vertigo. I received a call at work from his best friend who had been at the house earlier in the day telling me he wasn't doing well. I phoned home to check on him and he didn't answer the phone. I came home to find him on the lying bathroom floor not able to even get up and move to his bed. I managed to get him to the car and to the hospital where he did a three day stint. That was the beginning of the steroid journey.

As his mom, this is so, not about me, it is about him and his illness but there is still so much guilt wondering if I had done something differently while I was pregnant, if we had stayed in California rather than move to Alberta, Canada where the incidence of MS is so extremely high would he be OK and not have to endure this beast of a disease?

He still has not made a decision on switching to Tysabri. He can't get past losing the airmiles he says. My hunch is he has some fear around switching. The thought of a brain infection scares him.

I cry for him almost every day and wish I could take this one away from him. Feeling helpless again......

Tysabri or not to Tysabri

The history goes something like this, my son was diagnosed with MS about 2 weeks after his 22 birthday. That was almost 4 year ago. What a birthday gift eh? While waiting for his subsidy approval from the Ministry of Health in Canada, the relapses were devastating for him. He was bedridden alot of the time.

In Canada, the medication for MS can almost be fully subsidized except Tysabri. They claim they have no proof that is any better than the other 4 they do subsidize. In Alberta, if you meet the below criteria, all you pay is a max of $65 a month plus a copay and that varies by pharmacy which is a dispensing fee that runs about $25 per.

Patient must be assessed by MS neurologist (any
neurologist can become an MS neurologist)

Prescription must be approved by ministry of health review
panel

Patient must have relapsing-remitting MS, at least 2
attacks in previous 2 years and ambulatory with or without
mobility aid

He more than met the criteria but due to circumstances, it took close to a year to get it all in place. While waiting, the MS continued to get worse so the doses of steroids began. He had two rounds of IV prednisone as he was hospitalized two times during that year and one oral dose as we managed to keep him out of the hospital as we were learned to manage this beast. The subsidy finally came through, thank heaven for that as there was no way we could afford the close to $1,300 a month for these meds, and he began the Copaxone. He was on it for less than six months when his former neurologist decided the relapses weren't easing and switched him to Rebif. His system just did not tolerate the Rebif and the injections for him were so painful he wasn't following through so, consequently, he was not getting better. We were getting desperate to find some relief for him as due to the vertigo, he had no quality of life. He couldn't walk a straight line if he had to, the double vision stopped him from driving and he couldn't keep his head up long enough to go anywhere anyway. We used to try to get him to use a cane so he wouldn't fall but he refused to give in to it. I would tell him he was going to get arrested for drunk walking which he found humorous but still refused to use any type of walking aid. It quickly became apparent he wasn't able to stick with the Rebif so the next step was about a years worth of chemo and back on the Copaxone. It seemed a God send as it was a year free of relapse and he had his life back. He could drive again, was not missing work and was able to go out with friends and participate in life.

After six months after finishing his chemo treatments, the relapses or what they now think is one unrelenting relapse, began again. Albeit this time, not as severe although he did miss a week of work due to the vertigo again. His neurologist has now suggested he try Tysabri. Dustin's concern is with the continuous relapse/relapses. He has required way too much prednisone which has been an issue where Tysabri is concerned. He is also concerned as nothing has stopped the relapses and if this does not keep them manageable, what happens when he needs more steroids. His fear is the risk of PML and possible death. I must say I was happy to hear that he had some fear of death as about a month ago, he was feeling hopeless to the point of being suicidal. I sat with him one night in a parking lot, he and I both in tears, with me trying to convince him there is a good purpose to life. Pretty tough as I am not in his shoes and can only imagine his pain and frustration. So not the question is to Tysabri or not to Tysabri.......

The Small Things in Life that make it worth it

Talk about laughing through my tears. My son says the only benefit he gets from MS is the monthly air miles he racks ups as a result of the exhorbitant cost of his copaxone. So far he has turned those air miles collected over the last couple of years in to a nice 40" HD TV. Today he figured out a way to rack up even more every month. He calls it "airmiles inspired living to the max". He says it's the only thing that makes him jab himself with a needle every night......the crazy things in life that keep us going eh? Whatever works as I told him. The MS walk is this Sunday here and I always find it to be such a rough day as I'm forced to face reality in a big way. It will be even tougher this year as I go it alone without my family there with me. Not always sure this move was a good thing even though I'm trying to consider our future and where we can afford to be when all is said and done.

MS strikes again!

Mostly this is about life as a mom who has a son with multiple sclerosis and what that feels like. I remember very clearly the day we were told. My son symptoms presented with his left eye. It had stopped moving. The first thing they did after the initial exam was send him to see a neurologist who scheduled him for an MRI. We were sitting in his office as he went through the results and when he was finished, he asked what we thought when we heard the term multiple sclerosis. It took all I had to keep it together and not break down. For Dustin's sake, I did not want to do that. I was trying my best to be strong and positive. He kept asking what we thought and all could say was, "I need to go home and process this". All Dustin could say was he was glad it wasn't cancer that he could live with a wheelchair at some point but he has since changed his thinking. He had no idea at the time what he was up against. What was going through my mind was a friend who was diagnosed when we were in our late 20's. He was an electrician with his own very busy business. My thoughts went to all of scrambling to help him out as he was quickly admitted to hospital where he was bed ridden and couldn't even feed himself for weeks. Back then they didn't have MRI's and CAT scans so after ruling out other illnesses, the decided he had multiple sclerosis. I have lost touch with them due to all of us moving to different areas but I often wonder how he is doing.