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How to deal with a rapidly progressing disease.

I was diagnosed with RRMS in 2000. Over the years I have always been very positive about my MS, a cheerleader, even as they changed my pigeon hole to SPMS and now it is considered PPMS. It has been a relatively slow progression up until about 1 -2 year ago. Up until then the changes to me, while hard to believe, were manageable. In fact, I think your body and mind learn to adapt to your new situation and almost block how things were. Previously, years went by without any noticable change - but now I can look back a couple of months and tell you what has changed and worsened. Over the years, the majority of my problems have been waist down, with my legs being the worst since day one and getting consistently worse. Like many others, this is not the only problem we deal with - bladder issues, temperature fluctuations, balance or lack of ( which I find the most dangerous, because falling is real, I have fallen a number of times recently ), numbness and pain to name only a few more. Today, I find much more upper body issues, loss of dexterity in my hands, increased spasticity in legs and hands, cognitive problems. Currently, I gave up driving this past April 2023, but I can still get about my house with a walker and get out with a mobility scooter with a walker strapped on the back for outings, but have realized that to use the scooter, I have to be able to get myself to the garage which seems that will be short lived. I am doing my best to adapt and deal with the basic things - dressing oneself, bathing, cooking, cleaning etc. , all which seem to deplete my strength rapidly. While my spouse has been helpful, I understand that she will not be the caregiver for me. So having said all above, I guess this is now the reason for this post : I have to take careof myself - What's next and where can one go to learn how to deal with the next phase ? which I feel is coming faster that I want. I am now picturing myself in a wheelchair sooner that later and what does that look like. Changes that will need to be done around the house : modifying bathroom and shower, beds and sleeping and many other thing I don't yet understand. How to get around and the vehicle that I will need to accommodate? Will I need home care and to what level ? I am finding that the Dr's that have got me to this point, seem to be leaving me behind as there is less they can do to " Slow the Progression " Further: I find my mental state is not as positive as it has been and is harder to achieve the positive, Falling is bad because you can’t get up ! , UTI’s and recently Covid take all strength and mobility away both sending me to the hospital to recover. As I said previously , my spouse has been helpful but god forbidding, what if something happened to her ? , would I then be destined to long term care ? Kevin Wood Chilliwack, BC, Canada.

  1. What a lot to say and think about, . I understand completely the amount of worry and fear you are feeling just thinking about your next steps and what’s to come in your future. I hate this is your situation, but with the right planning and being proactive, you can still have a good quality of life with the right support in place. I want to share an article with you that talks about long-term care options. I also think this article would be nice to discuss with your partner as they help you navigate through your journey as well- Working through a chronic illness takes a lot of work and requires everyone to be on the same page. I think you both will find this article insightful. Lastly, I want to share with you our mental health hub which might spark inspiration for feeling better when you're having a hard time- Just know that we are here for you and if you have any questions, please let us know. - Latoya (Team Member)

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