Hi guys, first post here - My name is Amy, and i have a husband who was diagnosed with RRMS in february 2018 after a relapse caused stroke like symptoms which prompted a MRI which detected that his brain was “peppered” with lesions (the DRs words as well as us seeing it on the scan too). He started an Alemtuzumab treatment in the June of 2018, and had 5 days treatment in 2018, and 3 days in 2019. Once he was out of the relapse he was pretty lucky in that most of the symptoms and issues “went away”. They do show themselves if his temperature goes up, he gets an infection or hes super tired, but mostly do die down once the issue is resolved. Hes on Baclofen, Pregabalin, Citalopram, doxazosin, VITD3, VITB12 daily and had antibiotics whenever an infection showed itself. But since the Alemtuzumab treatments in year 1 & 2, no specific MS treatment. We are currently waiting for him to have this years MRI to confirm theres no new lesions, and the plan if everything is stable is basically manage any symptoms he may have from the damage caused from the relapse in 2018 and only treat with other MS drugs if he starts getting more lesions. We do understand that as far as this condition goes, hes very fortunate to be mobile still and not suffering too much atm compared to others with the condition and doesfeel grateful for that at least. He saw his neurologist today who is referring him to a sleep clinic as theres a possibility hes got sleep Apnea, and being referred to a bowel service to check theres nothing sinister there as he has accidents from time to time and quite loose motions almost every time he opens his bowels. He gets not a lot of warning and if he cant get to the loo in a matter of a couple minutes from first warning, he will lose control and have an accident. Otherwise the Neurologist is happy that things are quite stable.the one thing that shes noted is that his white cells havent bounced back as they would have expected by now (given its almost 2 years since his last alemtuzumab dose) and still sits quite low but nothing to a point they need to intervene, and have said he may just be one of those people that it takes longer to recover his white cell numbers than others. Hubby also suffers from depression and PTSD - he was a police officer who was very badly assaulted on duty (he was almost killed) so struggles daily with that as well as trying to come to terms with the MS diagnosis. We have 3 large sled dogs who dont ever go for a “walk” but pull like steam trains at the speed of a slow jog, (combined weight of all 3 is 120kg roughly and boy do they know how to use it) and due to health issues myself, hubby is the guy that walks them when he feels he can. On a good day, he can do 10 miles, and then still fit in a 5k run or HIIT session - but recently due to fatigue, dizziness, stumbling etc appearing more often, that is a lot less if at all on his really bad days (safety comes first and as our dogs are so strong, if hes feeling even slightly wobbly he doesnt take them, because theyd think nothing of pulling him over and keep on running dragging him behind them, across roads in front of traffic etc so for their safety and hubbys he doesnt go if hes not feeling 100%, and the bad days are outweighing good atm) He has gained a LOT of weight over the last 4 years, and even with the cardio exercise he does, and diet change, he struggles to lose weight which is obviously getting him down. Hes also VERY VERY stiff, flexibility wise, especially his legs. His neurologist has suggested several times about pilates or Yoga to which hubbys not been keen at all so hasnt tried it, but did start the joe wicks hiit workouts a few weeks ago, and whilst he found it very hard, and he couldnt do a lot properly because of how stiff he is, we saw big changes in his flexibility alone even from day one to day 2 there was a visible difference in flexibility and pace/ability and he started losing weight. He since has gone through a rough patch symptom wise and MH wise so stopped exercising and has stiffened up again.he does plan on restarting HIIT next week along with trying pilates/yoga (and while hes willing to give it a go i would love to hit the ground running and be prepared to help him as much as possible).
So, thats kinda his story, where we are today meds and treatment wise, and im hoping knowing the background, will help in giving the best advice.
We wondered, is there any pilates videos (like joe wicks does with HIIT but with Pilates instead) that youd recommend for him to visually follow and work out to, and specifically, ones that will help a person with MS do the right kind of exercise and right kind of stretches without causing injury or damage (which is what im afraid of if the Pilates isnt directly aimed at people with MS i guess) and whether theres like a basic “Kit?!” That he would need to have as a beginner if he was gonna give this a good go, that anyone would recommend. Cardio wise he is quite fit, but think HIIT got him hard, he thought it would be easy given his cardio he can do (hes done the couch to 5k and 10k several times over) and was knackard… so it got me thinking, perhaps we need to look at exercise that fits his diagnosis rather than expecting him to do a program that people without health issues can do… im terrified im going to make his MS worse by pushing wrong stretches/exercises, and whilst his neurologist didnt say HIIT wasnt a good idea for him and was impressed that he was doing it, she did lean more on suggesting he give pilates/yoga a try and get some flexibility going. Im assuming she would have recoiled and told him to stop doing HIIT style exercise if she thought it dangerous or harmful, but ive this niggle in the back of my head that me pushing him to do it (he asked for my help re him losing weight etc so was my idea to do the HIIT) is going to cause him more damage and injury if its not right for someone with MS and not specifically targeted at those with MS i guess. So i thought what better way to get advice, than that in a discussion board of people living with MS be it as a carer of someone with MS or the person with MS themselves.
So yes. Thats what this is about, a bit about my hubby and background, and a big hello and stay safe and as well as can be to you all and your “MS’ers”
Sending love and best wishes to you all, along with a huge sorry and thank you for reading this MASSIVE novel ive written .