MS Stories
Valerie's Blog
Valerie is married with one child and is the secretary for the Greater Moncton MS Society chapter. Although Valerie does not have MS, her husband Todd does—she is his primary caretaker and will be sharing her perspective on what it’s like living with someone who has MS.
Todd spent this past weekend at the MS Atlantic conference in Halifax. He had a very busy weekend. It was full of information on the different chapters and fundraising. Meeting other chapter ...
Todd spent this past weekend at the MS Atlantic conference in Halifax. He had a very busy weekend. It was full of information on the different chapters and fundraising.
Meeting other chapter chairs and vice-chairs was great and he discovered that we are not unique in needing more volunteers and chapter members.
We have been having this discussion for the last couple of meetings, wondering how to get more volunteers and members. I know life is so busy but there must be a way. How do other non–profit organizations get help with their fundraising?
There are meetings on the MS walk taking place in May and the Carnation campaign that happens on Mother’s Day weekend. We are trying to find new ideas for the Carnation campaign as it takes a lot of volunteers and time, spread over 3 days.
The Walk is always successful, we have started our fundraising and have $3000 so far. We always enjoy the Walk and this year we are partnering with our local Dog Daycare to get them involved and bring their furry family to support us. It is a new twist on the Walk which we hope will bring a lot more fundraising dollars.
On another note, it seems spring is here, it is warm one day, cold and windy the next. It always arrives this way in New Brunswick and then our hot summer begins.
We have just gone through an energy audit and have installed a heat pump/air conditioner. This should give Todd the cold air he needs for the summer and hopefully help with our huge energy costs.
This is also the time of year Todd usually has a relapse, but so far he is feeling well. Let’s pray it stays that way.
Have a great week,
Valerie
Ok, I know that Todd loves the winter and he always hopes for lots of snow but this is crazy. We now have about 6 feet of snow in Riverview! Our home will soon be an igloo where you will walk through ...
Ok, I know that Todd loves the winter and he always hopes for lots of snow but this is crazy. We now have about 6 feet of snow in Riverview! Our home will soon be an igloo where you will walk through a tunnel to get to our door.
And the craziest thing is we are getting a heat pump installed next week. Yes, as the rest of Canada freezes we are talking about how we will keep our home air conditioned in the summer, once the snow melts in June.
The last two years we have used portable air conditioners, very costly to run 24/7 and they only cool the rooms they are in. So Todd would be cool in the front room and hot walking through the rest of the house until he got to the bedroom. Quite silly.
He is already talking about turning it on in April—I think not. I can see a battle happening already, no Todd, you can’t freeze out the rest of the family with your new toy.
Stay tuned…
Have a great week,
Valerie
Well my cousin has been confirmed to go to the US for her Liberation treatment in June. I am really excited for her, always the realist though, she is taking it in stride. Through the treatment, she ...
Well my cousin has been confirmed to go to the US for her Liberation treatment in June. I am really excited for her, always the realist though, she is taking it in stride. Through the treatment, she is just hoping to get rid of some of her fatigue; anything else will be a bonus.
She has had a lot of illness in her family as of late, her daughter and husband—she is so strong to continue as moms do in time of need. Putting her own illness aside to make sure they are okay. I really wish we lived closer so we could support each other even more.
She has been a great source of support, especially since Todd was diagnosed. She has had MS for years so she is a great wealth of knowledge for us. She has done all her own research and has lots of ideas on coping.
Our prayers are with her and her family so that she may get prepared over the next couple of months, mentally and physically. You know we are here for you cuz!
As for us, we are still waiting to hear from those who have had the treatment done. Not ready to commit to it yet, because we’re still hearing negative and positive reactions. When the positives outweigh the negatives I am sure we will be ready to make our decision. At this point Todd is doing well and we just continue to listen to all the news and our friends, some who have had success and some who have not.
Have a great week.
Valerie
Ok, seriously, we have 5 feet of snow, I am sure there is someone out there who can use it. I can sell it to you real cheap. There is nowhere to put it anymore, so let’s hope the groundhog is ...
Ok, seriously, we have 5 feet of snow, I am sure there is someone out there who can use it. I can sell it to you real cheap. There is nowhere to put it anymore, so let’s hope the groundhog is correct and there will be an early spring.
While I dislike winter (although the snow is beautiful when the sun shines on it), Todd loves it. He has always loved the cold. Last Saturday he spent the whole day moving snow from the end of the driveway. I kept worrying about him, he took frequent breaks and he kept telling me it was beautiful out, so he kept working away.
Now if it was summer and we were working in the garden, we have to do it early in the morning before it gets too warm. Todd has always hated the heat, even before his diagnosis, he says it makes his mind foggy and he can’t even think straight. Even when he golfs he goes out at 6am so he is back by 11am. It is hard really, I am a sun and garden worshiper and he would rather spend 3 hours knocking snow off the trees at the walking trail. Spending time together works best in spring and fall—best of both worlds.
Isaac and I will go for walks in the winter, well maybe it is closer to spring when we like to go…hahaha .
Todd is doing well at the new job; it is quite tiring right now as he has to work in the office 8 hours at a time. He is used to working from home so he can take frequent breaks. At least he still has a job he is able to do well.
Saturday is our annual MS Pancake Breakfast fundraiser—pancakes with real maple syrup, sausage, eggs, homemade bread, juice, tea and coffee! If you’re in the Greater Moncton area, join us between 8am and 11am at the Riverview Lions Club.
Have a great week.
Valerie
Well the hustle and bustle is over for another year. I find it sad pulling all the decorations down, everything seems so plain! It was a different Christmas this year, not having ...
Well the hustle and bustle is over for another year. I find it sad pulling all the decorations down, everything seems so plain!
It was a different Christmas this year, not having Todd’s or my Dad around. I am told it gets easier when someone passes away after you go through all the “firsts”…birthdays, Christmas, holidays...you know all the times you usually see them. Those times were really special to Todd and me as we live 3 hours away from our families, so we don’t see them often.
Our resolution this year is to try and see our family and friends more. You realize when you lose someone you love, you better spend more time with those who are here. Both our Moms are getting up in age so we want to spend as much time with them as we can.
We don’t usually make resolutions, they are too easy to break, putting too much pressure on you. Instead we just try to do the best we can to be good people.
So Todd still has the stress of not knowing what is happening with his job. It is almost as though they forgot about him. He went into the office last week to see if there is any word on what department they would move him to but there was no one around to talk to. Not a great way to start the New Year for sure.
Send your prayers our way please, Todd would not be able to find another job that would be so accommodating to his illness…I am sure a lot of you know what I am talking about.
To all of you at MS Village and those who read my blog, may you find health, strength and happiness in 2011. May you have prosperity and spend time with those you love.
Talk to you in a couple of weeks.
Have a wonderful day!
Valerie
We had a wonderful turkey dinner with the MS Society last night. It is always fun to get together, lots of laughs and good food, and I didn’t have to cook or do dishes! Isaac was such ...
We had a wonderful turkey dinner with the MS Society last night. It is always fun to get together, lots of laughs and good food, and I didn’t have to cook or do dishes!
Isaac was such a good boy last night, it is hard because a lot of time he is the only kid his age at these functions. There was one boy about his age but they arrived just as dinner was being served so they didn’t get to talk to each other. He was quite the gentleman though, talking to the girls at our table, he made us very proud.
After dinner and a visit from Santa, we were able to hear from some of the members. There were four ladies who had the Liberation treatment, so they were sharing their experiences.
It was funny, as one of our friends had a noticeable improvement in her walking but she said she didn’t see or feel that. We noticed as soon as she walked in. Our other friend was very pleased with her procedure and had warm hands and feet for the first time in years.
All four women had very positive experiences, two received their treatment in Poland, while the other two in the US. They couldn’t say enough about the treatment and the doctors and nurses who performed it. They definitely sounded like they were pampered.
One of the ladies had no changes as all, I am sure that is hard to deal with. You went all that way, paid a lot of money, qualified for the operation and did not see any improvements. She was told it may take a few months to see improvements, we pray she has some success.
It was definitely a hard decision for all of them to have this procedure done.
Prayers go to all of you, for continued improvements and good health.
Valerie
Last week we were still dealing with the shock of Todd’s dad passing away. His mom is doing better and we will be moving her to a new assisted living apartment next week. This past weekend we ...
Last week we were still dealing with the shock of Todd’s dad passing away. His mom
is doing better and we will be moving her to a new assisted living apartment next week. This past weekend we packed all her stuff she wouldn’t need and gave it to those who needed it. It was a strange feeling not to have Papa joking with us and telling us stories of every painting book he had. We will surely miss you Papa.
On to happier news, my adopted family is coming to visit this weekend. It is so exciting as we have not seen them in six years. This family was a host family for me 28 years ago when I was at an international youth camp with the Lion’s Club. We had a connection from the very first day and have stayed close ever since. Of course I have Todd running around fixing all the little things in the house that we neglect until we have visitors.
Todd is doing better this week; the funeral and family gatherings were definitely tiring for him. We are trying to get back to our normal busy week life with basketball, MS meetings and swimming.
Isaac is almost over his lung infection. We were very concerned Todd would catch it but so far he hasn’t! There is an awful cough and sore throat with the infection, so Isaac is using an inhaler, nose-spray and gargling two times a day. Not fun—he missed an entire week of school.
Well, hope everyone has a great week. As with every November, it is starting to get cold. This is also my favourite time of year when the Christmas concerts and craft fairs start. Ho Ho Ho.
Valerie
I am sorry I have been missing the last couple of weeks. After a very short illness, Todd’s Dad passed away on October 12. So the four weeks leading up to this have been a whirlwind of ...
I am sorry I have been missing the last couple of weeks. After a very short illness, Todd’s Dad passed away on October 12. So the four weeks leading up to this have been a whirlwind of traveling to our home town.
Todd was able to spend the Thanksgiving weekend with his Dad. When Todd arrived on the Thursday he was told it could be any time, but to everyone’s surprise on Friday Todd’s dad woke.
He had a wonderful visit with all his children, had some ice cream (he hadn’t eaten in three weeks), and spoke with his six children. He also saw his sister who arrived from Calais, Maine. He was able to talk to Todd’s mom and spend the day with her. Todd and his siblings speak fondly of this day. On Saturday, Dad (Papa) fell asleep again and did not wake up.
I missed this day with him. I was working in my daycare and looking after Isaac. When I saw Papa on Monday, he did not wake, although he moved his hand as I held it and spoke to him. I hope he knows I was there.
Isaac saw Papa when he first went into the hospital at the end of September (when I was doing our fundraiser for MS) and he was able to have a nice visit. Something he will always cherish.
To our surprise Papa’s older brother Jack, who he had not seen for years died on the Sunday night. We did not tell Papa, but his sister was told. So now Auntie Flo is the only one left of that part of the family. She laughed, being the oldest, she never thought she would outlive her brothers.
So, for Todd and I losing both our fathers in eight months has been hard. Todd is holding up well for now but I am sure it will hit him the next time he picks up that phone to ask his dad how to re-wire something (his Dad was an electrician).
It hit me several weeks after my Dad passed away when we were heading to our home town and as always I asked to drop into see Dad. It is really hard when your parents get older.
My mom is 81 and Todd’s is 84, and our plan is to spend as much time as we can with them from now on.
Rest in Peace Papa,
Valerie
The weather is cooler in the morning and evenings, making life much easier for Todd. We took Isaac to school yesterday, grade 5, his last year in elementary school. He is so big, I am excited for him ...
The weather is cooler in the morning and evenings, making life much easier for Todd. We took Isaac to school yesterday, grade 5, his last year in elementary school. He is so big, I am excited for him to have new challenges and prepare for middle school.
Fall brings our first meeting for the MS Society. There has been a lot of rumours going around about the Society, and how it is their fault the CCSVI trials aren’t starting yet. In my opinion thy Society does everything they can to help those with MS and their caregivers. They have put aside millions to have these trials, but the government wants to make sure the trials will be going in the right direction. They want to see if the blocked veins are a cause or symptom of MS. The Society will continue to push the government to do the trials.
When Todd was first diagnosed, our chapter was wonderful, giving advice and helping with the cost of equipment needed, paying for Todd to go to the MS clinic in Halifax. We cannot say enough good things. These trials are not their decision, it is Public Health—this is who people should be complaining about.
I know it means more time before Canada allows the Liberation procedure to be performed and I can’t imagine how someone suffering feels, but I think it is the right thing to do. There are people spending thousands and they aren’t better after the procedure, but others feel much better. There has to be a link between the two.
For now, we will concentrate on school, getting out in the fresh air and continuing to listen and hear all the good and the bad regarding the Society, government etc. Please do your homework and make your own opinion, don’t jump on a bandwagon against something because someone else is mad.
There is lots of information on the MS website.
http://mssociety.ca/en/research/medmmo_20091021_faq.htm
Have a great week.
Valerie
So as we prepare for what could be a severe hurricane in Moncton, I am reminded of our flood in 2006. We laugh about it now, checking our sump area late at night and standing there watching the ...
So as we prepare for what could be a severe hurricane in Moncton, I am reminded of our flood in 2006.
We laugh about it now, checking our sump area late at night and standing there watching the water rise higher and higher until if flooded our basement. It cost us ten thousand dollars of damage, six weeks of renovations and relocating the daycare to our front room (which is clearly not big enough for 6 kids to run around).
Fighting with the Mayor and town engineers to fix the obvious problems, even though we are not engineers, we saw how the rain from the street opposite us cause a whirlpool in the sewers, not allowing the water to flow away from our home instead pouring in to it.
Fight as we did, the street was not fixed until 2008—or is it fixed? No one at the town hall will confirm that our sewers are fixed, I am sure it is because they will be liable if anything happens.
This is not so far from the CCSVI trials, as much as we fight they will not be done. The government is afraid to commit to something unknown, not wanting to take a risk.
Sometimes you just have to do it and hope it works. People are paying to go overseas. Charge us half the cost and we will pay Canada to do the surgery; a waiver is always signed for elective surgery so there is no reason to be concerned with retaliation. We all just want the opportunity to decide if we want to take the chance to feel better.
So, like Earl, we shall watch the storm with the government and the MS society…hold on to your hat!
Be safe,
Valerie
Let me start by saying we had a much nicer vacation this time than last month. My cousin Marie who has MS and family visited and Todd was able to do some day trips with us. It was wonderful! He only ...
Let me start by saying we had a much nicer vacation this time than last month. My cousin Marie who has MS and family visited and Todd was able to do some day trips with us. It was wonderful! He only got tired a couple of times, but waited in the truck for us. Marie was good as well, so all the kids (Isaac and Marie’s two girls) got to enjoy our time together.
Marie has her name on a couple of waitlists for CCSVI surgery. Her expectations are not high; she knows she will probably still be in her wheelchair that she has been for 13 years. But she hopes the treatment will help with fatigue and the awful migraines she encounters almost daily.
Her girls (ages 11 and 7) thinks she will walk again—Marie tries to keep them in check, telling them that won’t happen. But their excitement is concerning. I hope they will not be too disappointed if that does not happen.
The Premier of New Brunswick is on board to start clinical trials if the Federal Government and Health Canada will promote it. That would be so wonderful. Todd wants to go to Poland, but we just don’t have the money. At least if he was involved in the trials here, we would know if he was a candidate for the procedure.
Our heads spin with the amount of information and “hearsay” on all of this CCSVI controversy. I sometimes wish it was six months from now, so we would have evidence of the success or lack of and can make a more informed choice.
In the meantime we will continue to read and listen to everything, keeping in mind only 50% of what you hear or read is true.
Have a great week,
Valerie
Well, the Copaxone seems to be working…yay! Todd has had some energy and has even taken Sam, our golden retriever out. That is how I measure Todd’s fatigue. He usually walks 10 km every ...
Well, the Copaxone seems to be working…yay! Todd has had some energy and has even taken Sam, our golden retriever out. That is how I measure Todd’s fatigue. He usually walks 10 km every day with Sam. When he was on the Rebif it was 3 weeks in a row he could not take him.
Todd has taken Sam out to the Fundy Trail four days in a row now—time to celebrate!
Isn’t it amazing how such a simple act can make you want to jump for joy? I am looking forward to our vacation next week; if you remember our vacation in July, Todd could not do anything. With luck, he may be able to do a couple of little day trips with us. How exciting!
My cousin Marie is coming to visit from Halifax with her family. Marie was diagnosed many years ago with remitting relapsing MS and has been in a wheelchair for many years. It is wonderful for Todd to get to talk to someone who understands what he is going through. She is such a positive person and tells it like it is. If Todd is feeling sorry for himself at all (which is rare), she tells him to smarten-up and realize things could be worse.
Well, have a wonderful week, prayers to all our friends undergoing the CCSVI procedure and hoping everyone will feel better!
Valerie
Note from MS Village: Valerie will be away on vacation next week and will not be providing a blog. Please check back the following week, to catch up with her.
Another hot weekend, but at least the humidity was not high and there was a bit of a cool breeze. Todd did use some energy to help me in the garden before crashing each afternoon. So we made it ...
Another hot weekend, but at least the humidity was not high and there was a bit of a cool breeze. Todd did use some energy to help me in the garden before crashing each afternoon.
So we made it through the week with Todd not on any MS or anti-fatigue drug. It wasn’t as bad as we thought it would be, Todd was able to continue working and just napped each evening.
Todd has started back on the Copaxone and we are going to go to a naturopath on the 19th of August, so hopefully she can help with any stomach issues Todd may get from the Copaxone again.
We talked to Melissa this week, she feels really good after her Liberation surgery. She is been able to walk in high heels, amazing! Todd asked her to send him the information for the clinic she went to, scary thought.
I am still following all the information closely, listening to the Provincial Premiers and all the information I can get my hands on...praying we will be shown what direction to take.
Have a great week,
Valerie
Todd saw the MS nurse and his neurologist yesterday. He has decided to go back on Copaxone. The “professional” team really couldn’t give him any new information or help. His options ...
Todd saw the MS nurse and his neurologist yesterday. He has decided to go back on Copaxone. The “professional” team really couldn’t give him any new information or help. His options were, stay on Rebif and be exhausted all the time or go back on Copaxone that helped the fatigue and hope you don’t gain 30 pounds again and have a distended, uncomfortable stomach all the time—what great choices.
For Todd, it’s a week off of all meds then start Copaxone again. We are going to try a naturopathic clinic to see if they can help; maybe some preventative exercises will help him with the side effects that come with Copaxone. Unfortunately, we feel at this point that the nurse and doctor are not much help—how can they be, they can’t imagine how someone feels with MS. Should all our MS specialists have MS or be close to someone who does, maybe they would have better insight and understand the frustration?
We are keeping good watch on the Liberation treatment, it is scary. I think on one hand it would be wonderful for Todd to feel well again, but at what cost?
I see the CBC has reported that Premier Brad Hall of Saskatchewan is ready to help fund clinical trials…read more below:
http://www.cbc.ca/health/story/2010/07/27/multiple-sclerosis-wall-ccsvi-liberation.html
My friend Melissa is home from Poland and doing well. I wait anxiously to see how she is long term. I am so happy for her!
For Todd, it worries me, I want to see more results from people who have had the treatment and long-term effects.
More later. Have a great week,
Valerie
Well, it is that time of year when we experience heat waves. Todd has been feeling like “mush” this week. With humidity warnings of 40% and temperatures of 32 degrees or more—it is ...
Well, it is that time of year when we experience heat waves. Todd has been feeling like “mush” this week. With humidity warnings of 40% and temperatures of 32 degrees or more—it is HOT!!
Because of the overwhelming heat—I thought I would share this reminder from the MS society of Canada website.
10 Tips to Beat the Heat – by Trish Robichaud
For people with multiple sclerosis, finding ways to beat the heat is about more than just comfort. Staying cool this summer may mean the difference between a season filled with fun activities and one spent in what I call “horizontal mode”.
Here are 10 tips to help you stay cool when the temperature soars.
1. Air conditioning
Air conditioning may be your weapon in the fight against heat. I have a window unit in my bedroom for sleeping. If air conditioning isn’t possible, a dehumidifier and fans can help. By removing some humidity and creating a current, the air will feel cooler. When all else fails, visit the mall, library or any place that has air conditioning. If prescribed by a physician, the cost of an air conditioner (maximum $1,000) can be claimed as a medical expense on your federal income tax form.
2. Keep the sun out
Keep the window shades drawn from at least 11:00 am until 2:00 pm. The mid-day sun can increase the heat in the house and make it difficult to cool down in the evening.
3. Sleep alone
It sounds lonely but it’ll be much cooler without the body heat that comes with a spouse, child, dog or even the family cat sharing your bed.
4. Wear cotton
Cotton takes perspiration away from the skin leaving you drier and more comfortable. Select light-coloured cotton clothes, nightwear and bedding. Cotton sheets not only absorb sweat, but permits your skin to breathe, making you more comfortable and less restless. Better sleep means more energy and better mobility.
5. Cool showers and baths
During the summer, there’s nothing more satisfying than a cool bath or shower. Even running cold water over my wrists (or another pulse point) for a few minutes cools me down. When I can’t sleep at night because of the heat, I fill a pan with cold water and soak my feet – it really helps to lower the body temperature!
6. Keep exercise moderate
Exercise is important but it’s tempting to skip it when it’s hot. Do exercise but keep it moderate. Don’t push yourself too hard and be sure to take a cool shower afterwards to bring your body temperature back down.
7. Try swimming
If possible, choose swimming as your exercise during the summer. Swimming works all the major muscle groups while helping to maintain a lower body temperature. It also helps with balance and mobility.
8. Seek shade
When you’re going to be outside, always sit in the shade. Even better, sit in the shade where there’s a breeze.
9. Wear a hat
The sun beating down on your head has a huge impact on your body temperature: always wear a hat when you’re out in the sun.
10. Try cooling clothing
A number of manufacturers now make cooling vests, hats, etc. Last summer my husband came home with cooling bandanas. They have gel crystals that retain cold when wet. You run it under cold water and tie it around your head. As long as it stays wet, it stays cool – neat!
Have a COOL week everyone!
Valerie
Note from MS Village: Valerie will be away on vacation next week and will not be providing a blog. Please check back the following week, to catch up with her.
It has been a rough week. Todd has been sick with the cold and flu for 3 days. I find it frustrating; when I am sick I have to still run the daycare, look after Isaac and the house. I sometimes ...
It has been a rough week. Todd has been sick with the cold and flu for 3 days. I find it
frustrating; when I am sick I have to still run the daycare, look after Isaac and the house.
I sometimes feel Todd doesn’t even try to feel better—I know, with MS it is hard to fight off infections and viruses, but it still is very frustrating.
It was my birthday on Tuesday and Todd forgot to even say Happy Birthday—very sad. There was no card or present, not that those are important to me, but it just seems whenever there is something important happening for me, Todd gets sick. Maybe he is allergic to me! Haha.
On a happier note, we will be celebrating Canada Day at our town park. There will be bands, cake, and things for the kids to do. Isaac always has a great time.
The weather is supposed to be hot and sunny the next few days, and I have a 4 day weekend; so lots of swimming and puttering in the garden.
I am looking forward to the break from the daycare and just taking some time to relax.
Until next week, hope everyone is feeling well,
Valerie
Well my friend Melissa is heading to Poland in July for the CCSVI treatment. She is hopeful and fearful of this new procedure. There are still so many unanswered questions regarding this ...
Well my friend Melissa is heading to Poland in July for the CCSVI treatment.
She is hopeful and fearful of this new procedure.
There are still so many unanswered questions regarding this procedure. My biggest questions are about long term results and complications.
With so much controversy, it must be a very difficult decision for her. She did say she felt all the signs were there, from her family winning some money, to the letters and calls she has received from the clinic in Poland.
I am excited for her and anxious to see how she makes out. This procedure may help many MS sufferers…how wonderful would that be!
However, I err on the side of caution. Is it too good to be true? Would it help Todd’s extreme fatigue? We will have to wait and see.
May God travel beside you on your journey Melissa.
Have a great week everyone,
Valerie
We attended our MS chapter’s appreciation dinner tonight. We all enjoyed the turkey dinner. Isaac thought it was great. The usual thank yous were given…for everyone who helped with our ...
We attended our MS chapter’s appreciation dinner tonight. We all enjoyed the turkey dinner. Isaac thought it was great. The usual thank yous were given…for everyone who helped with our walk, to the people who gave us the venue, the RCMP for keeping everyone safe, etc.
Our president, Marilyn, completed her term—a special thank you to her for showing me what I need to do to be our chapter’s secretary. She is wonderful, and will be missed.
Todd and I gave the presentation for “Mother of the Year”, to a wonderful friend who gives her all for her children and husband. Even with her challenges with MS she is always involved in her children’s lives.
The big surprise though was when Todd went to the podium. I didn’t think much of it as he was helping to organize the awards. Then he started getting emotional and I knew what was happening. The president and award committee had nominated me for “Caregiver of the Year”! Wow!
To me, looking after Todd and Isaac is just what I have to do, be it exhausting and frustrating at times, it is our life and I just “do it”.
The speech was touching and included words like “once I was diagnosed she went to work finding out about meds and what we had to do to get me well. I don’t make it easy on her sometimes changing medicines and routines”. My favourite part was his closing: “This won’t kill me, but I thank God for my Hero Val”.
I am humbled. Love you Todd and Isaac.
Valerie
Well Sunday turned out to be a beautiful day for our walk. The rain held off until later in the day, so although the wind was cool, the sun felt great. Our team raised about $2,300, not bad. Todd ...
Well Sunday turned out to be a beautiful day for our walk. The rain held off until later in the day, so although the wind was cool, the sun felt great.
Our team raised about $2,300, not bad. Todd was not very active in getting donations this year; he was just too tired. Surprisingly, he could not even finish the Walk. He usually does at least the short 1.5km Walk, but he could only go part of the way. The rest of our team, including Isaac, completed the 5km. Yay for us!
Todd helped out at the finish line and was happy to do that, but the realization that he can’t do things when he wants, was an eye opener.
First count gave our total Walk at $35,000 but we are waiting for the rest of donations to be collected. We hope to have another $10,000 or so by the end of the counts.
A great effort by all.
Have a great week,
Valerie
It has been a rough couple of weeks for Todd. He has been so tired, the new medicine has caught up to him and of course one side effect is fatigue. He finally got in to see the neurologist at the ...
It has been a rough couple of weeks for Todd. He has been so tired, the new medicine has caught up to him and of course one side effect is fatigue.
He finally got in to see the neurologist at the end of last week, so he has got some medicine now that is supposed to help.
Todd’s fatigue exhausts me…(pardon the pun, hee hee) I have to pick up the slack from him not being able to do much.
I think this is one of the worst parts of MS. At the end of the day Isaac wants to play with his dad, and I need his help with household chores; but all Todd can do is lie in bed.
Summer is coming and we need to be outside playing, swimming and enjoying the season. I hope this medicine helps with his fatigue.
We did go to Halifax this past weekend, to visit with my cousin, she also has MS so she fully understands when Todd was tired. We truly enjoyed the musical, Peter Pan. The kids had a wonderful time and the performance was amazing.
Have a great week.
Valerie
Wow, Todd and I went to a very interesting seminar this week; presenting was Dr. Dessa Sadovnick, Ph.D., Genetics, Professor, Division of Neurology of UBC. Dr. Sadovnick is a Principal ...
Wow, Todd and I went to a very interesting seminar this week; presenting was Dr. Dessa Sadovnick, Ph.D., Genetics, Professor, Division of Neurology of UBC.
Dr. Sadovnick is a Principal Investigator (with Dr. G.C. Ebers) of the nationwide Canadian Collaborative Project on Genetic Susceptibility to MS and is a co-Principal Investigator on the Prospective study of the epidemiology, pathobiology, and clinical outcome of Canadian children with clinically isolated demyelinating syndromes (CIS). She is the co-director and academic advisor for the M.Sc. Genetic Counseling Program at UBC and is a member of the Medical Advisory Committee of the MS Society of Canada. Dr. Sadovnick is a Member of the Board of Directors of the BC and Yukon Division of the MS Society of Canada, and in 2007 she was awarded the MS Society of Canada’s Merit Award.
We have always wondered if Isaac would be at risk to get MS. Turns out through all the research that has been done in genetics he has about a 3% chance. Not bad!
While Dr. Sadovnick was speaking, she talked a lot about the positive effects of vitamin D for MS patients. She also said, babies born in November and May had a higher risk percentage of getting MS. Isaac was born in November…scary. But like I said 3% is not bad for a percentage. It made us feel a lot better. She suggested we talk to our doctor about giving Isaac vitamin D to decrease his chance even more.
The stats were a little overwhelming, she really focused on letting us know that the chromosome 15 is the key to MS. If you, or one of your parents have a damaged 15 chromosome you may be more at risk to develop MS.
The presentation was taped on Rogers TV and aired May 14th (you will see this blog later than that, but check your listings, it may be on again).
Also this information was sent by the MS Atlantic office: “Genetics & MS” discusses the latest information on genetics research related to MS in Canada. The program will air at 7pm on Friday, May 14 on Rogers Community Television in New Brunswick. A copy of the presentation will also be available through the MS Society’s Lending Library. Please contact us at 1-800-268-7582 if you’d like to borrow this, or other materials from our Lending Library.
Have a great week.
Valerie
Some of the things I find hard with having a sick husband are the little things around the house that never get done. I suppose this happens when you’re not sick as well, but I just find I can ...
Some of the things I find hard with having a sick husband are the little things around the house that never get done. I suppose this happens when you’re not sick as well, but I just find I can only do so much of the repair stuff, before I can rely on Todd.
Take the lawn for example; I can’t believe I had to hire someone to mow our lawn this year. Todd couldn’t do it last year and I did it, but it takes so long and I never did like mowing the lawn; I find it exhausting, instead of rewarding.
As well, I have not been feeling well. I was just diagnosed as a diabetic; this explains why I have been so tired. I am trying to take better care of myself so I can continue to be the caregiver.
Even a simple task of painting becomes a huge deal when you have MS. Planning to paint a room could take days depending on how tired Todd is. I know it frustrates him as well that he can’t do as much as he used to. He always took pride in repairing “his” house, renovating and having it look good.
I am also looking for a handyman, so when the time comes I will have someone I can call who can help out around the house. Unfortunately, no family is near enough to have them help.
Perhaps we can start including handymen in our wish lists for funding. You may laugh, but lots of health plans include homemakers that help with cleaning etc.—so why not a handyman who can fix the cupboard door that has been loose for 2 years, or the towel rack in the downstairs bathroom that no matter how many times I screw it back in the wall, it falls out again?
Or perhaps I am looking at this all wrong. Maybe as caregivers, there should be a course on 100 easy home repairs….hmmm a new career of teaching for me…perhaps?
To all the wonderful, caring, patient mothers out there, enjoy your day!
Valerie
Well , Todd has gone off to Myrtle Beach to do some golfing with the guys. It is the first time in years he has travelled. Even before he was diagnosed, he was always concerned about travelling. ...
Well , Todd has gone off to Myrtle Beach to do some golfing with the guys. It is the first time in years he has travelled. Even before he was diagnosed, he was always concerned about travelling.
He was very concerned about what to do about his medicine when he went through security at the airport, and if there would be any issues. He was afraid he would get sick away from home.
He had no problems on the trip there and is having a great time. He is golfing early before it gets too hot, and relaxing in one of the 3 pools at the condo…(no I am not jealous, much!). I hope this trip will make him realize he can travel without problems. Like anyone, he may get sick—we checked on our insurance and we are covered if anything happens.
It was a lot of work for me checking on everything to make sure he knew what to do, talking to the airline about his medication, arranging his passport, getting American money. I know he appreciates all I did to arrange his trip (he better!! Haha).
We are planning a trip to Halifax in May as a family…not as exotic, but the first trip I have been on in many years as well (except to our home town an hour and half from here, boring!).
Todd should be home on Thursday and Isaac (and me) are really missing him. The hardest part is not talking to him daily, they are too busy and it is expensive to call—he has emailed though.
Hope everyone is doing well, have a great week!
Valerie
So great news, Todd is feeling well enough to go golfing. Todd has always had a passion for it and played whenever he got a chance. He did golf a bit last year, but that was the first time in a ...
So great news, Todd is feeling well enough to go golfing. Todd has always had a passion for it and played whenever he got a chance. He did golf a bit last year, but that was the first time in a couple of years.
Todd says the new medicine is making him feel much better (so much for my concern of an April relapse, yay!). So he and some friends are flying to Myrtle Beach for a week of golf. Todd is nervous to fly and we are checking on how he has to carry his medicine on the plane and that all his medical insurance is in order.
I am really jealous he is going to a shopping mecca without me! I am anxious to see how he makes out traveling. Our family plans for traveling have been put on hold the last couple of years. We have taken some day trips, but that is it.
We are planning a trip to Halifax in May to see my cousin, so hopefully this trip will give Todd the confidence to take some trips again. I think he is always afraid he will get sick or he won’t have the energy to do anything when we get to our destination.
It has been hard on me not being able to plan in advance. I am a planner; I need to know where I am going, where I am staying and when. It is hard for me to just do things on the spur of the moment, but that is how our life is now. If we have plans and Todd is not feeling well I have to make the decision to do the activity myself (usually with Isaac) or cancel.
I hate having to make that choice. I want us to do lots of family activities together so Isaac will have wonderful memories of both of us with him. I find the most difficult thing with Todd’s disease is that I end up doing lots of things alone with Isaac.
So I will wish Todd safe travels and try not to get to excited that we may be able to start traveling again.
Have a great week!
Valerie
So my thoughts this week are all about spring. The birds are singing and the flowers are starting to poke through the ground. It is a time of renewal, a time to dust the cobwebs from our homes and ...
So my thoughts this week are all about spring. The birds are singing and the flowers are starting to poke through the ground.
It is a time of renewal, a time to dust the cobwebs from our homes and minds. I love spring in case you couldn’t tell. It is the crisp mornings and warm afternoons that make me happy.
But, it is also the time Todd usually has a relapse. I once read the change of the seasons impact MS patients and can cause a relapse. I don’t know how true that is, but of the 2 years Todd has been diagnosed, each April he was sick. The first year being the worst, loosing the use of his legs, a month in the hospital and 5 months of physiotherapy. The second year, it was not as bad, fatigue and mental exhaustion.
This April Todd is feeling good…so far. I just hope it continues, I think if he gets through April he will be well for the rest of the year. At least I can hope for that.
So as I prepare for spring, planting and painting around the outside of the house I will be thinking of all patients with MS, hoping they too are able to enjoy the spring.
So get out and enjoy the sun!
Valerie
It has been a pretty good week in the Russell household. Isaac, my 9 year old, has not had issues with bullies at school this week and Todd is feeling better. Todd switched to a different medicine ...
It has been a pretty good week in the Russell household. Isaac, my 9 year old, has not had issues with bullies at school this week and Todd is feeling better.
Todd switched to a different medicine last week and is now taking the full dose. It makes him have flu like symptoms so he is taking gravol, but hopefully it won’t give him stomach issues like the last one.
I find it so amazing that Todd’s doctor just gave us a DVD and some information and said pick a medicine based on what symptoms you can live with. No recommendation or stats on what his patients felt worked better. I guess it is really a trial and error type of thing.
I am looking forward to having a long weekend—working 50 plus hours a week, then taking care of a house and family can be exhausting.
I hope everyone has a wonderful Happy Easter.
Valerie
So it always amazes me how much energy Todd has. He says he is “done” but continues to push himself. I suppose this is to please me and help around the house. The funny thing is I seem to ...
So it always amazes me how much energy Todd has. He says he is “done” but continues to push himself. I suppose this is to please me and help around the house. The funny thing is I seem to be the one overly tired lately. I think it is the weather. I am done with the winter cold and darkness. Bring on the spring!
Saturday was a warm and beautiful day. I took down the Christmas decorations and cleaned up the yard. There was a lot of snow still on the deck and I really wanted to have a bbq. So Todd continued to shovel the snow and ice so we could get to the bbq.
Todd took several breaks, but continued to work. He has always approached jobs with the thinking he has to get it all done in an hour. He would not stop until the job was done even if it took all day.
I think planning tasks, especially around the house, knowing he should take breaks and rest over a couple of days is the best way to finish the job. But, how do I convince Todd of this? I think he feels if he stops working, he won’t get back to it and then it will not get done and I will “yell” at him. I don’t think I would really yell at him—he just says that to tease me.
So, during this spring while gardening or any home task you may have, remember to sit back, take a break and smell those roses. Even when you don’t have MS, it is a good plan to have.
Have a great week,
Valerie
Cancer is the fourth sign of the Zodiac. Its name derives from the Latin cancer...literally "the crab". Cancer individuals are tried and true. They are good at sustaining others and appear ...
Cancer is the fourth sign of the Zodiac. Its name derives from the Latin cancer...literally "the crab". Cancer individuals are tried and true. They are good at sustaining others and appear to have a mission to take care of not only people and themselves, but also their means of making a living.
I am a Cancer, I was born to be a caregiver, but it is not always easy. I get very tired sometimes, working 50 hours a week, plus looking after our 9 year old. Todd, my husband, helps as much as he can, but men just can’t accomplish what a women can in a day..…hee hee hee. (no offense gentlemen) . Being positive about life is essential for us.
So I wanted to share this story: I received a call from one of the MS society members; she wanted the MS Village website address and as we talked she recalled how positive Todd is at the self-help meetings. She told me about a member who is not very positive, an introvert and hardly went to any meetings. That is until Todd started going…
Todd makes everyone laugh and she said he always has such a positive attitude about his MS and life. This member now comes more often and Todd teases him and they joke around. Todd always says, “if I don’t laugh I will cry, laughing is more fun” .
She said Todd seemed very proud of me for doing this blog and sharing my experiences with everyone. That was nice to hear as those are things Todd is not usually verbal about. Although he did give me a hug and high five when I told him I would do this.
I also saw this positive attitude in Todd when my dad passed away on February 2, 2010. He kept my mom and family members laughing and trying to make the best of a difficult time.
My dad had been sick for many years—a stroke 22 years ago became disabled him. He was able to walk for many years, and started with a positive outlook. He soon lost that though, gave up on life, was confined to a wheel chair. That is how he was for over 10 years. So although this is a blessing, it is also a great sadness, not only for his health but the life he could of had, had he not given up.
Makes me wonder about being positive, how to not “give up on life”. Life is worth living no what matter the difficulty. It is worth it to see happiness in others, your child and family. I am sure it is very difficult when you are not feeling well, and so tired. I get very tired as well, but Todd and I always try to laugh at the situation and keep being positive—it’s not easy, it’s a mind set.
I will end with this, Todd came out of the front room the other day, tripped and almost fell into the table. I quickly checked if he was ok and then we laughed so hard I was in tears. If he could have only seen how funny he looked—it was like in a cartoon where the person is tripped and they exaggerate the fall; I need to keep the video camera handy.
How you do keep positive?
Valerie
Hello! I am so excited to start blogging with you! I have been reading Jen’s and Michelle’s blogs and I am excited to share my journey with MS. Let me clarify, I don’t have MS but ...
Hello! I am so excited to start blogging with you! I have been reading Jen’s and Michelle’s blogs and I am excited to share my journey with MS.
Let me clarify, I don’t have MS but my husband Todd was diagnosed in February 2008. It has been an interesting journey so far, to say the least. It was almost a relief to know what had been causing Todd’s illness for many years. He had vision problems, breathing problems (lungs), joint pain, leg cramps, peracarditis, extreme fatigue and depression. In 1995, he was diagnosed with Sarcoidosis (also known as sarcoid), a non-contagious autoimmune disease which causes inflammation and possible scarring of the body's tissues). But, somehow I never thought that was his illness though and now we know why—doctors found out he had 21 lesions, and estimated he has had MS for 20 years, which made perfect sense to me. As for the sarcoid, only a dangerous lung biopsy can determine if he has it. So for now, we will treat the MS.
Although I was feeling devastated, angry and sad I had to find the strength to deal with what was going to happen. My focus had to be on helping Todd and my son to understand and cope with this news.
A bit about us, Todd and I have been married for 16 years, we have a wonderful son, Isaac who is 9. Todd works as a Quality Analyst and his company has been wonderful about helping us—they have set Todd up so he can work from home. I opened a community home daycare in 2003 to be home with Isaac when he was little. Before the daycare, I was a director of a hotel for 13 years.
Todd and I are actively involved in our local MS society; I am the secretary and he is involved in fundraising. We had our 1st annual Scrapbooking for MS fundraiser last September, which was very successful. Scrapbooking is my hobby and stress-fighter.
I look forward to your feedback and support as I share my weekly experiences.
care•giv•er
Pronunciation: \-ˌgi-vər\
Function: noun
Date: 1966 : a person who provides direct care (as for children, elderly people, or the chronically ill)
— care•giv•ing \-ˌgi-viŋ\ noun
