Service Dogs Part One---Ski Lift Cable Car Outing at Ski Resort This picture is of me and my 5 year old service dog named Candi. We are riding inside one of the gondola cars traveling back down the mountain from atop the ski area. It was after Labor Day last September and a stunningly gorgeous day with unbelievable views at the top. OK lets back up to the day before. I had done my research online about the ski resort so I would know what to expect and to bring. At the top of the ski area where the skiers get off it is quite high and much cooler than at the bottom...about a 15 degree difference, which meant dressing in layers. So I picked out a jacket that had an inside zipper for my small wallet and other pockets for other things. I made sure my big camera that I was taking was in its camera bag with its wide strap. I needed to keep my hands free of carrying anything because my left hand held Candi’s leash and I had to keep firm control of that at all times. So no purse, no cane or anything else in my right hand. The camera then went around my neck. In Candi’s dog vest she carries information on her, poop baggies, some treats, water, etc. Next morning we were off and it is a bit of drive to get there. When we finally got there it was obvious tons of other people had the same idea and the parking lot which is on an incline was almost full. My heart sank for I can’t walk that far on an incline. But then an attendant came up to us and said we could the handicapped parking, for he had noticed the handicapped license plate on our SUV. Off we went and parked within feet of where we wanted to be, we were so lucky! While I got things ready my husband took Candi for a potty walk in an appropriate area and she was now set. Then we got our tickets and used the nearest restrooms. Candi goes with me and we use the handicapped stall. She is trained to sit and stay where I put her in there and she does fine. If I need help getting up then she is there. When I go to wash my hands she gets a drink of water out of my hands as her front paws rest on the counter. When done I wipe up after us. It’s my responsibility to keep her clean and any area that she uses. I do walk by myself but I am a bit wobbly but walking with Candi controls that. She walks on a short leash right next to my left thigh and also wears a Gentle Leader which is a strap attached to her leash that goes high around her muzzle. With this on it helps me keep control of her pulling and walks at a safe gait for me. Anyway we now go to the lines waiting to take a gondola ride up to the top. These cable cars keep moving along when they come into the station platform that is how you get on them. A touch scary for someone like me. So my husband had me get in the car first and then he gave me Candi and then she followed right after me. All went fine and we sat down for the ride to the top, Candi was a bit concerned about this moving and noisy thing we were in so she just sat next to us and we took pictures. Arriving at the top we had to get out of this moving car but again holding tight to Candi and help from my husband all went fine. The view was breathtaking to say the least!! They had a restaurant, restrooms and a gift shop BUT everything was built on platforms with stairs and no level ground anywhere and sheer drop offs everywhere. Yikes! Well after all this is where the skiers start their skiing from but I just had not anticipated this. However the info I read about the top said getting to the restrooms up there was tricky but I had ignored that as we used the restrooms below. I should have paid more attention to that warning for now I know why. I don’t do well on stairs and inclines at all. My husband wanted to go everywhere and see everything but I could see I couldn’t do that. So told him to go ahead and Candi I would do our best to take in as much as I could albeit slowly. But I was determined to give it my best shot. I was scared every minute that I would fall down and roll off a cliff or something. My husband reminded me this would not be a good place to have to call 911 so be careful! So Candi and I just meandered around and took pictures. Without Candi’s help I could not have done it and didn’t want to impose on my husband and he could not have helped me the way Candi was trained to do anyway. Finally it came time to go back down and all went well again and Candi was so good about it all. When we got back down we took in some other things that were there and sat for a while in the sun. We were tired now and headed on out and then my husband had a rest room stop. While I waited for him a lovely couple came up to me to talk about Service Dogs. You would be surprised at the attention we get this way all the time. One big thing I have learned from this is that the average person knows very little about Service Dogs and we are both more than happy to explain things to them. This particular blog is just meant to show a glimpse of what a Service Dog can do for someone living with MS for the list of what they can do is extensive. Next Blog, Getting and Living with a Service Dog and is it right for? Just another great option for people with MS. Holly Mornings are rough enough, cold winter mornings are even worse. Roll out of bed, flop my legs off the side of the bed and let the shaking begin! If I’m lucky a nice cramp will go ripping through my leg as soon as I try to touch my heel to the ground. When a leg cramp occurs my left leg spasms into a straight pole and will either vault me directly into the wall or shoot me back onto the bed, both are great ways to start the day. Either way I have to somehow try to get my heel on the ground and stretch it out. It seems no matter how much stretching I do throughout the day my leg aches and never seems to settle down. So I brought this up to my PT and she recommended that I get a brace that would keep my foot at ninety degrees as I slept. When you have foot drop your foot even drops as you sleep and the tendons and muscles in your foot have no weight on them to remain stretched out so when you wake up stretching is a must. My appointment was made and I headed out to Ann Arbor to the University of Michigan Orthotics and Prosthetics building for a fitting. Really it was quite simple. It went by shoe size and weight so no measuring or molds to be made. I was surprised by the size of the thing...it’s pretty big and bulky to be sleeping in! The doctor showed me how to put it on at night and then showed me the kickstand…really it has a kickstand? It keeps your toes from pointing in or out, I’ve yet to extend the kickstand but it’s a nice feature to have. For the past two weeks I’ve worn the sleeping boot all but one night and it really seems to make a difference for me. My leg has been less achy and I haven’t had a cramp in the morning since! Be a warrior today, Donn http://www.rcai.com/products/02MP.html Seems like forever since I've had the time to sit down and write a blog. Now that the holidays are over and the snow has settled in, it reminds me of how MS patients sometimes feel isolated at this time of year. Whether you are too tired to navigate the snow or like me; just not sure of myself on the ice and snow, there are ways to navigate these things. With three artificial joints and counting, I know I am very reluctant to venture out. However, sometimes bread and milk do need to be replaced. If friends and family can't help, here are my strategies.
Reach out, don't be alone. Email me if you just want to chat. I'm here trying to stay warm and keep enough bread and milk in the house. Stay cozy and safe. Susan A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS. You just arrived home from the doctor’s office and you don’t remember a minute of the drive for you just received the devastating news that you have MS. You recall the doctor saying it was incurable and they don’t know how one gets it and no prognosis can be given as to how it will affect you personally long term. You are shocked and have a million questions. But the doctor does not have time to go into all that except to say there are therapies one can try designed to help with MS and a lot of research is being done for MS. He hands you some reading material about MS and tells you to make another appointment with your questions. You get out to your car and just sob! Now home you are reading what the doctor gave you and barely understand any of it and your mind racing in all directions and thinking No, No this can’t be, not this…. it just isn’t me, I refuse to go down this road! What about my dreams, my plans, my family, my goals and how will this affect me and what will be the cost? What do I do now and what help is there? Now comes the positive part. You now know what you have and you can become proactive about it. Learn all you can about it and it will become quite clear there is a lot you can do to help yourself and you are not alone with it. The mere fact that are reading this site Health Care Journey could very well answer most of your questions and also directs you to other sites that you should also look into. Get to know people that have MS so they can tell you about their experiences and you can make new friends. After you have gathered as much information as you can about MS then you can design your own plan on how you are going to deal with MS and what works for you. As time goes on medical things get better and technology advances so there IS hope! Yes MS changes one’s life and yes it might be a tough road but just keep on going for life itself is not easy anyway. DON’T try to go down this road alone either, it doesn’t work! Above all remember there is A LOT of help available and all you have to do is seek and ask for it. Keep in mind that there is NO question or problem that you may have that that many before you have also had and there are answers. I have had MS for at least 30 years but got the diagnosis about 24 years ago and life went on. At best it has been an interesting and helpful journey, may yours be even better. Holly The holidays are a stressful time for everyone so I wasn’t too surprised when my MS symptoms started to flare up a little bit. My balance which isn’t that great to start with had become so bad that I had started using my cane on occasion if I knew I was traveling a long distance or going somewhere that might present some tricky situations. I figured 2 weeks off for winter break was all that I would need to recharge and get back to “normal”. Thanksgiving is my second favorite holiday behind the 4th of July, the only way to beat football and turkey is BBQ and baseball! This Thanksgiving was extra special as my wife and I were finally going to tell the rest of our family that we’re expecting our second child this spring. The stress of expecting the new baby was the beginning of my new symptoms. I became extra spastic in my legs and now in my right arm too. Previously my MS has only affected my left side so a twitchy right shoulder got me worried; numb toes really got me worried! Along with newly tingly toes and extra wobbly balance my vision started to get shaky. Vision has never been an issue but I’m aware that many people with MS struggle with vision problems so this was just another stack of great news to go along with everything else. Finally we sprung the news that we had another baby on the way and I was very relieved to finally be able to share the news with my family and friends. Thanksgiving was over and break was only a few short weeks away, I could make it. The Sunday after Thanksgiving I had my Tysabri infusion and actually didn’t mind spending 3 hours sitting in a chair because it meant that I would get a chance to unwind and relax. Winter break finally arrived and just like every other teacher and student I was excited to finally get off of the grind for a little while and spend some time with my family. The first night of break we all went to Holiday Nights at Greenfield Village and had some fun, I was in such rough shape that my in laws went and got a wheelchair for me. I didn’t use the chair instead I pushed my son in his stroller all night and limped along through the 1860’s. Break was off to a not so spectacular start. Christmas was fun I got to spend time with all of my out of town family and see all of my nieces and nephew. I ate too much food and relaxed as much as possible but the new symptoms were still present I was beginning to think that I might be in the middle of an exacerbation. Good thing my 6 month neuro checkup was the Tuesday after New Year’s. Once I started explaining all of my new symptoms she asked how long had I been having them for, I explained that it had been going on since a little bit before Thanksgiving. She looked over the list and went to get the head neurologist who is my regular doctor anyway so I thought nothing of it until he walked in and started asking me the same questions I had just answered. “Do I think it’s PML, no but since you are JC positive let’s get some pictures to make sure and see if we can see any new activity.” Christmas, family and a new baby are all stressful to a degree, a potentially fatal brain infection is in a class of it’s own. As I numbly drove back to work from my appointment I couldn’t stop thinking those three scary letters PML. When I got to work I got online and completely ruined my day by looking up the symptoms that went along with PML. The most prominent symptoms are clumsiness, progressive weakness, and sometimes personality changes according to Wikapedia. Check, check and check, my personality was quickly changing! I never let MS get me down but PML had just punched me in the face and I was sure I was going to die or have to endure some crazy treatment to hopefully save me. My wife as always was my rock, “it’s going to be fine, get your MRI and we will go from there.” I have never looked forward to an MRI before but I couldn’t wait to lie in that stupid tube and listen to it honk, beep and thump while it scanned my brain and spine. After the scan was complete I got dressed and walked out the doors into the freezing cold sure that the results would confirm that there was an infection in my brain. When I spoke to my Doctor he explained that he saw no signs of PML and that there were no new active lesions either. He thinks that the extreme cold weather and the stress of the new baby have teamed up to get my MS irritated. “We will monitor it closely and get steroids going if needed”. So the good news is my brain isn’t being eaten by PML just the usual lesions. Be a warrior today, Donn A brand New Year with fresh ideas and time to take inventory of the last year, meaning too I still have MS and assorted other problems to deal with. I will make no resolutions about anything just because the date changed for that never worked for me. I have discovered that if I really want to change something I have to just DO IT! At this point of my life with MS and age I have to take stock of what worked and what didn’t last year. I need to let go of some things and cultivate others. Believe it or not I was trying to ignore my MS too much like it wasn’t there and went too far with that. MS has its place in my life as much as I wish it didn’t! It’s like a bad situation...if you don’t deal with it, it does not get any better. I know the areas in my life I need to work on for better emotional health which helps a lot with MS. I have many things I love and that give me wonderful peace and calmness. When I allow negativity and aggravation into my life my MS acts up no end and that’s bad! Last year reminded me just how much control I really have left in my life. SO here is to the New Year and the things I will practice that I learned from last year. May your New Year hold a lot of happiness, Holly
Good morning fellow journeyers. I haven't written a blog in a while. Seems I haven't had any pearls of wisdom to share recently. Actually, I guess in some ways that is a good thing. I haven't really had any major issues with the day to day routine. When things go smoothly with health issues, we sometimes even forget that we have this disease. Those moments are blissful. Then with all the hustle and bustle that this season brings, sometimes our symptoms increase due to fatigue. It is said time and time again, but pace yourself. When accepting invitations or scheduling tasks, make sure to put days in between for rest. I just returned from two whirlwind days in NYC. Somehow I forgot to take my own advice. Three Broadway plays in two days and four hours each way in the car is not smart. It took its toll and had me down for the count for a few days. Like the old saying goes. Everything in moderation. So here is my holiday advice. One day at a time, one cookie at a time, one step at a time and many many hugs and kisses from those you love and cherish. Happy Holidays to Everyone. May the new year bring everyone peace and good will. -Susan Lately my electronic foot drop device hasn’t been holding a charge as long as it once did. This has led to many interesting situations of me being stranded without power or a cane.
When I first started using my L300 Plus it would hold a charge for up to 12 hours; these days I’m lucky to get eight. I charge it all night same as always but I think I might need to get a replacement before the warranty is up! So far I have been stranded at school with its angry carpeted floors, shifty 1st graders and mini furniture and also while out holiday shopping with my family. While at school it was rough as there were some vast distances that needed to be covered through some treacherous terrain. I managed pretty well, never really falling down but there were numerous very close calls involving little people and little furniture. Lucky for me I have long arms and can wall walk whenever I got into a tight spot. While out shopping the battery died on me and again I was extremely lucky, I was pushing the shopping cart so it wasn’t too bad but I was extremely cautious while walking around anything that might cause a seen if I went crashing into it. I avoided the mirror aisle at all costs; I don’t need any extra bad luck! By the time we made it back to the car I was exhausted. Having the power go out is one thing but last week my 2 year old son got in between my feet in the kitchen and we both took a pretty good tumble. I was OK...a few bumps and bruises but he thought he killed me. “I BROKE DADDY WAAAAA!” After lying on the floor for a few minutes he saw that I was fine and we got up and carried on with our morning. I consider myself lucky so far with my struggling batteries and recent falls but I push on!! Be a warrior today, Donn |
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