Hi..I am new here, but CMT has been with me forty years! My symptoms have recently gotten worse and I am struggling...

[Enzowilldoit]

At this point I am pretty much wheelchair bound. Until recently I could still do warm water therapy at a local pool which was so helpful. I need badly to lose weight. One of my legs is very crooked from hip down which affects my balance. Recently I began to have trouble with transfers...getting into bed and in the bathroom. Also bathing is a huge issue. I have a strong support system in my husband...thank the good Lord...and a closeby daughter. Upcoming will be seeing if occupational therapy can help me. I had just been feeling discouraged and anxious and came across this site, so thought I would explore it a bit. Thanks for being here.

[MommaWheels]

Welcome to the site. Hopefully you can find some support here. It’s normal to feel discouraged when your level of independence is changing. I’m glad your family is supportive. Reaching out to people who are in a similar situation can help you feel less isolated. I’m in my 40s and my Cmt has definitely gotten worse as I’ve gotten older so I can totally relate.

Do you have any equipment to help you with bathing? A handheld shower head? A tub bench? If you see an occupational therapist hopefully they can make some suggestions. I have a ton on bars in my tub and just got a tub bench but am thinking more about getting a roll in shower with the graded floor. I just have to figure out how to pay for it!

Good luck with the new challenges you are facing. Set some small goals for yourself and hopefully that will reduce your anxiety.

[Enzowilldoit in reply to MommaWheels]

Hi Mommawheels! So kind of you to reply! Good ideas. I do have handheld shower nozzle and bath bench. We bought one of those devices you sit on and it lowers you into the water etc..it worked well mechanically but our tub is a smaller size and so i was pretzled and did not have much fun with my knees at my chin. Lolo...live and learn. Somewhat comical! We also have many bars around our house which help me alot. I read a little blurp somewhere that said "what if tomorrow you only had the things you were thankful for today?" So I try to think on those things daily. I am thankful and happy to have heard from you...i don' t know anyone locally. Our very good MUscular Dystrophy group has gone away in the past year due to the dedicated Dr. who ran it moved away for family needs. It left a big hole sadly. Some are hoping to re-instate it..fingers crossed. We are having a sunny day and that always helps. Hope your day is going well. The grandkids report some leprechauns dumped out their toys last night!!

[MommaWheels in reply to Enzowilldoit]

Being thankful daily definitely helps get through the day. We do have a CMT group close but I haven’t been lately. I am still able to work at this point with accommodations at my job and driving an adaptive van so I’m pretty tired when I get home. I also have a 13 year old son so he keeps me busy. I don’t know anyone else with CMT either so I check this site regularly for ideas and just to remind myself I’m not the only one dealing with this stuff. The weather was great here today too. Keep up the positive attitude!

[Enzowilldoit in reply to MommaWheels]

Hi MommaWheels...we looked in to getting a van to accomodate the wheelchair..but expensive. Used ones even are out of range, but we will keep searching because it is apparent I will need one in the soon future. We test drove one and it was truly very cool and we could see the advantages immediately. But you mentionned goal setting, and that is definitely one now! A more reachable one is related to our spa in the backyard which I have not been able to use for over a year. Currently my husband is building ramp and deck to (hopefully) enable easier access for me. The warm water is helpful and desirable. He uses it every day....he knows I love it and this is CONSTRUCTIVE goal setting. Thanx for your reminder on that. I can imagine how busy you are. My grandson is 13....teenage angst with autism as a factor. He is homeschooled.

One more component to life is having something to look forward to, and now I look forward to an upcoming spa experience! I will hope that you also have something to look forward to...oh, and daffodils are up here now.😊💐

[Coffeeman]

I'm sorry that you're going through such difficulties. I've had CMT for about 50 years. I'm not in a wheel chair yet and I'm fighting that. I basically need assistance getting out of bed and getting up from chairs. I too have a weight problem. I put myself on a low carb keto diet. It seems to be helping. I'm slowly losing weight but I need to be careful to not lose muscle. I recently started physical therapy hoping to learn how to exercise an keep the effects of CMT at bay.

Please don't let CMT defeat you. Your blessed to have a husband that cares for you. It sounds like you're trying to do some therapy. You may want to talk to your Dr. And ask for a referral for therapy. I wish you well. God bless you.

[Enzowilldoit in reply to Coffeeman]

Hi coffeeman..thank you for your encouragement. I feel glad to be exposed to other folks with CMT..thoughts and ideas ...it feels very isolated where I am and this is helping me! I have bowel issues which limits my dieting efforts. Currently i am on better choices and smaller portions...lots of veggies, whole fibers etc. We'll see...for the better part of the last decade I did warm water swimming therapy 2-3 times a week and it kept my muscles pretty strong. It is the best! I was taught a good workout by a therapist and loved it. I think it kept me out of a wheelchair and enabled me to continue to teach until retirement loomed. Kindergartners keep you moving! But now I definitely need the chair...i do ride a stationary bike sometimes but it is hard. I do sitting down tai chi which is ok..and currently my hubby is trying to figure out how I can best use our spa..the getting in and out challenge. Used to be easy and the warm water so wonderful on the joints. I am looking for therapy as my CMT worsens to try to target specific issues. And I have a counselor actually, to help with stress. Stress send CMT into overdrive I have discovered! Ha! But I will keep on keeping on. God's mercies are new every morning..thank you so much for your kind words.

[Messianicmex]

I don't know what I would do with our JESUS HE is the joy of my life.... sometimes you have to encourage yourself in the LORD.... which means that sometimes no one else can help.

Matthew 11:28

28 Come to A)" style="font-size: 0.625em; line-height: 22px; vertical-align: top;">Me, all you who labor and are heavy laden, and I will give you rest.

[Messianicmex]

Im sorry that didnt cut and past very good lol

Matthew 11

28 Come to Me, all you who labor and are heavy laden, and I will give you rest.

[Nicho48 in reply to Messianicmex]

I Have had cmt For 70 years although slow moving ,had. several operations through the years to help,as I was a Chef for !40 years ,now retired . I would no have been successful if I had not had the Lords help. I praise Him daily for his. Mercy and cars to me. .

[Enzowilldoit in reply to Nicho48]

Hi Nicho 48..thank you for your note... I also count daily on the Lord for His everlasting love and care for me. His mercies are new every morning! Yay for that blessing! ✝☺️

[Nicho48 in reply to Enzowilldoit]

Thinking over your situation ,I have help from a very good neurologist,also from Dr ,who understands my fatigue issue also my Balance ,seems you may need to get some help guidance for your future ,are you able to get some counseling in the other health issues that you have . Every Blessing for your future .we are all in the same boat as far as how we will cope as we advance with our age .

[Enzowilldoit in reply to Nicho48]

Hi Nicho..yes i have a new neurologist who seems very helpful to my issues. And also i will soon start with an occupational therapist i feel can address many of my problems. Yay! And i do have a counselor who is kind and helpful and also a Christian! ...i feel many blessings day to day. The Spring is beautiful which keeps me smiling for sure 💐 . A bouquet for your day! God bless you...

[Enzowilldoit in reply to Messianicmex]

Messianicmex...i lost track of you after you responded to me with scripture. I wanted o tell you that I also love Him with all my heart and I know it makes a big difference with my CMT struggles...God bless you..

[Messianicmex]

Thats awsome Enzo !!!!! Im glad to find a fellow believer in the RESURRECTED ONE .... because HE lives i can face tomorrow!!!! Just never give up and lets pray for one another. Godbless!!