Primary Progressive MS Questions??

[Sticklegs]

My husband has PPMS. He was diagnosed almost three years ago and mis-diagnosed for three years before that.

He is a quadriplegic now. Lately he is having some difficulty with speech and swallowing. The speech comes more from difficulty getting air and enough power to get the words out. He had to have some bladder stones removed at the end of February and in some of the testing that led to that procedure … we were told that his right lung was starting to get "spongy" at the bottom... it is not fully inflating.

Has anyone had experience with this symptom? We are doing the exercises given to us by his speech therapist and he does use the oxygen exerciser religiously... it is the one that they always give patients at the hospital.

Any ideas or suggestions on how we can (1) keep him motivated to do all his daily exercise activities and (2) any other recommendations.

I appreciate and am grateful for any thoughts or comments.

Lastly... you ALL are amazing and without this site I don't know what I/we would have done. The lived experience that you all so lovingly share is SO MUCH BETTER than what most of the medical professionals can offer because you deal with this every day!! Thank you so very much!!

[jimeka]

Hi, so sorry that your hubby is going through this. I have PPMS and was at the consultants only yesterday being investigated for larynx cancer but it turned out to be ms, which I am grateful for, but my neurologist says that not everything can be attributed to ms. It is hard to face when things start to decline, and I cannot find the right words to say to you. We are given a new day every morning and it is up to us how we use it. Smile, be as happy as we can, plod on, and enjoy what we can. Maybe ask your hubby what goals he wants to achieve. Make him a goal chart and then at the end of the week, have an award system. I don’t know what your hubby is capable of doing but the daily goals can be simple tasks and then he can look back over the week and see that he can still achieve something no matter how small. Keep in touch, many blessings to you both, Jimeka 🤗 🤗

[Jesmcd2 CommunityAmbassador]

Hi Sticklegs nice to meet you. I am so sorry to hear that your husband is having a hard time staying motivated. I think tho, HE has to be the one to make up his mind to Just Do It. And get it over with. And realise it's for the best For Him!? Check with his Dr. About maybe, <~ notice word maybe... Being able to switch it up?

You hang in there! Sounds like your doing everything you can! So kudo's to you!🤗💕

J🌌

[greaterexp]

I'm so sorry about what you and your husband are facing. He is really blessed to have such a loving caretaker.

I hope that he is always being evaluated for depression and that it is being treated. It's hard enough to stay motivated when circumstances are tough, but being depressed on top of it really takes the wind out of our sails. Does he have any interests that would urge him to have interactions with others and keep him focused? He is able to get outside at all?

Be sure to take care of your needs, too. We are cheering for you both.

[goatgal]

Sticklegs The burden on both of you must be heavy in very different ways. Your husband has lost his independence due to disability and you have lost yours due to his needs. You don't say in this post what his interests and pleasures were prior to the quadriplegia. Thanks to our electronic devices and technology, much of this may still be accessible to him, though some (like virtual reality) may present a steep learning/adaptation curve. It must be difficult for him to stay upbeat and positive. With the tendency of MS to send even the most optimistic of us into depression, he may be especially vulnerable. You also don't say how you are coping with this, what support you have from family, friends, and community. Though it may be difficult, you need to have blocks of time available for you so that you can tend to your own spiritual and emotional needs, time to take a walk, have lunch with a friend, play the piano, garden, to continue to keep your interests and spirits alive. There probably are caregiver forums on the internet where you can receive support and answers to some of your questions, and it's presumptive of me to suggest this when you have more than likely reached out to them as well.The recent issue of Momentum, the magazine from the National MS Society (MomentumMagazineOnline.com) has an article with resources entitled "Finding a caregiver." Some of these may be helpful to you. Please stay in touch and let the forum know how you both are doing. We care.

[lbenmaor]

I'm sorry you're husband is having such a hard time. He's lucky to have you by his side.

Best Wishes,

Leslie

[Sticklegs in reply to lbenmaor]

Thank you Leslie. I am lucky to have this time with him. We worked together for about 30 of our 38 years, but this time together is different, more special. We get to REALLY talk to one another. So in this one way, the MS has been a blessing. Thank you for your kind thoughts. Laura

[lbenmaor in reply to Sticklegs]

I'm glad you feel that way.