Living with C.M.T and Parkinson’s, Fybromyalgia (Chronic Pain)

Hello

I would like to invite you into my thoughts and feelings on a subject that affects my life on a daily basis. When I thought of setting up this blog, it was mainly to help me come to terms with the cards I’d been dealt in my life.

I would like to introduce myself. Sounds strange, as this is something I would never have dreamt of doing until I came across the world of Parkinson’s with the help of a little technology.

Its true.! I’m normally a ‘suffer in silence’, kind of girl. So, when I first began sharing my life and feelings, I wondered how it would help not only me but also other people in my situation. That’s a bonus if it does…. What a lovely community to be a part of. So positive and forward thinking and so much talent there too!

My name is Shelley, and I am 55 years old. I’ve been married for 32 years now.
Wow, that’s a long time!. I have three daughters and six grandsons. My family is my world and I know they are with me all the way.

I’d first like to take you back many years. I can’t say I ever remember being ‘normal’ (whatever thats supposed to mean!), 😊. I always had aches and pains. I also had a slight shake in my hands. But for me, that was ‘normal’. My mum used to say that I actually shook as a baby in my crib and as a child, I was always being taken to the doctors for various aches and pains but mum was told it was just ‘growing pains’.

Then fast forward to when I was in my late twenties. I was married, just had my first daughter and was working part time. I started to suffer with pains in my hands and arms, my legs and feet. I was finding it very difficult to cope. I was sent to see an orthopaedic surgeon, who then sent me to see a neurologist. I had various tests and an operation for Carpel Tunnel syndrome. Then I was diagnosed with CMT.(Charcot-Marie Tooth disease).

I was given medication and told to “go live my life.!!”, which I tried to do as best I could.

Finally, after much deliberation and sadness, I had to retire from working as I simply could not go on any more.

Then a few years ago I had a bad bout of pneumonia and my heart had to be stopped twice to reset it. A few months after that I got a very bad tremor. It like came overnight, down my right side. Thinking it had something to with my CMT, I just carried on coping, until my family forced me to visit the doctor.! The first time I went to see the neurologist about my tremor I saw him for about five minutes and I was told that it probably was ‘essential tremor’. I was put on more medication but had to re-book an appointment. because I wasn’t responding to treatment. I was then sent to another neurologist who carried out more tests. I had an MRI, certain blood tests and was then sent to London to see a top neurologist, who suggested I should have a Dat-scan.

I was finally diagnosed with Parkinsons. I was told that three neurologists weren’t convinced of the diagnosis until they had the results of the dat-scan.

I believe my Parkinson’s began in my middle to late thirties. That was when I was getting symptoms of the disease. Unfortunately having Charcot Marie Tooth disease, I thought the symptoms were from that.

Wow! I really couldn’t believe my luck. Not one but two diseases.!! Probably, thats why it was so difficult for them.

I must admit , to start with I went very much into myself. I’m one of these people who has to get things sorted and then move on, which I think, personally, I have.😊.

Being able to speak to so many people and hear other peoples stories has helped me so much. I always think of my glass as being half full. Smiling through is the only way to go. Sorry, no more clichés. 😊.

I’d like to share with you on this blog the ups and downs of being me.

N.B. I also have been suffering now for many years with Chronic Pain. It’s been attributed to my conditions I have had over the years, but just recently I have been diagnosed with Fybromyalgia , not only that, over the past few years have also been suffering chest infections , every three months . Until I recently was told I have asthma / COPD, and the menopause . What can I say ? Just taking each day as it comes, 🙂

Thankyou for reading 🙂

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37 thoughts on “Living with C.M.T and Parkinson’s, Fybromyalgia (Chronic Pain)”

  1. Wow I’m glad I came across this via the Parkinson’s, my other half also has CMT and was diagnosed 5 years ago aged just 40 with Parkinson’s. His consultant said it wasn’t possible to have two genetic mutations, obviously you can, you are both living proof!

  2. very interesting blog shelley,my claim to two illnesses are pd for eleven years now and angina,just had a stent fitted and i almost forgot i was diagnosed with hodgkins lymphoma 5 years ago but i suppose i shouldnt count that as its thankfully in remission,i live with my 12 year old daughter and she is a great help but i try to stay upbeat and do as much as i can,i have bad days and it feels like its getting the better of me but i just challenge it when that happens i will say to mr pd i think i,ll take you for a hill walk today,he doesnt like that lol.

    1. Thankyou Alan, for reading, I certainly understand what you are saying. I try to keep my smile through whatever problem arises. It’s hard, but it helps. :-). Hope you having a good day today.:-)

      1. thanks shelley,i,v been to see my neurologist today and he is arranging for me to be assessed for an amomorhine pump therapy for the parkinsons as the meds i,m on are having little effect and if that doesnt work they are going to assess me for DBS surgery heres hoping the pump is effective!!

  3. Hi Shelley. Thank you for visiting my blog. I hope you found my natural approach to PD helpful. While I have not yet overcome PD, I believe the key to recovery is fourfold:

    1. Detox the body through diet, herbs and supplements
    2. Heal the emotional root cause (for me, anger and fear)
    3. Correct structural damage to the body, especially neck & spine [I use Body Stress Relief, but I would also suggest Osteopathy]
    4. Fill your life with love, peace and happiness

    Best wishes on your journey!
    Fred

    1. I haven’t yet read all of your pieces, yet I agree with with some, I have a great structure of family around me , which I believe helps me a great deal. I also feel we must try all aspects of healing that we can. As what may work for one, may not work for another . But if there is no harm in trying , I say (do it) . Thankyou for visiting my blog too. 🙂

  4. My husband has CMT and we were actually just talking about this. So far he only has the one but said its very possible for him to get Parkinson’s also. Hes 34…hoping he never gets the other, ones enough.

  5. My husband has CMT. He mainly has issues with his right foot. His mother died from ALS and his father had Parkinson’s. I think my husband has parkinson’s too, but he doesn’t like to have any medical for diagnosis. I think if he would of had his foot braced earlier, it wouldn’t be as bad as it is now. I’ve read the symptoms of PD and he has a lot of them, but then I wonder if some of them are from the CMT. Do you know if early medical intervention would help to limit the progression of Parkinson’s?

    1. I think they say if Parkinson’s is caught in the early stages, they can manage it with the dopermine agonists at the beginning, I think I had Parkinson’s for many years before diagnosis. I thought a lot of the symptoms were to do with my CMT.
      It would be really up to your husband if he wanted to be tested and examined for this. May I ask how old your husband is.? I hope I was of some help 🙂

      1. He will be 60 in October. He broke his foot when he was about 25. The doctor wanted to have him tested then for CMT, but he wouldn’t do it. He finally went to a foot doctor about 12 years ago and they told him he had CMT just from looking at him. For the last couple of years I notice when he sleeps he does the pill roll thing with his thumb and finger. And sometimes he just has small shakes in that hand when sleeping. He jerks his foot when sleeping. He hardly has any balance but with the CMT in his foot, that is understandable. He is having more pain in his arms lately. I don’t know how to approach him and try to get him to talk to a doctor about it

      2. The only thing I maybe can suggest is to show him my blog in passing. Maybe to say I have CMT and other things. It might help him decide. It’s a very personal choice. Please let me know. All my best to you and your husband.:)

  6. Hi Shelley was great to hear your story and I consider you very brave sharing it, I am a 54 year old female who has CMT and I was diagnosed when I was 25years old 6 mths after giving birth to my one and only child. My CMT is hereditary and it came from my father who also has CMT and Parkinson’s disease as did his father before him, I have found it very difficult whilst researching to find any conclusive medical evidence to find info on the two conditions being Linked? It is a very tough call being afflicted with two serious conditions in the family,at this stage I am not showing symptoms of Parkinson’s but as both conditions can show similar condions it always plays on my mind. Thankyou for sharing your story shelley I feel somehow better when I hear of others out there travelling down a similar path regards Deb

    1. Hi Debbie,

      Thankyou so much for reading and sharing your story with me too, it’s amazing to hear that your father and his father before have got the two conditions , and how similar our journey has been . Our age is very similar too. I’ve found since starting my blog and joining different forums , how we are definitely not alone . I have found a few people so far with the two conditions, and am hoping that through my blog and searching I find more people , as it may help the doctors and professionals understand us more and recognise the two conditions together . When you say you are concerned that you may have parkinsons too, I would perhaps visit the doctor and discuss your concerns. Please keep in touch . ☺️ sending you my best wishes
      Shelley 😊

  7. Do u remember the name of your London Neurologist? Pls reply to my email address. I’m so glad I found your site.

  8. Just came across this blog on Facebook. I am a caretaker for my parents who moved in with my family 6 months ago. My father has Parkinson’s and was diagnosed close to 15 years ago or so. My mother has Parkinson’s, fibromyalgia, has had carpal tunnel surgery, surgery on her neck, and also has Shogrins disease. The fibromyalgia was diagnosed many years ago, the Shogrins about two years ago, and the Parkinson’s a little over a year ago. My father had DBS surgery 5 years ago and it has helped some of the Parkinson’s symptoms but does not stop the progression of the disease. My mother is really struggling with the loss of her independence. I cannot let her drive (many accidents) and her reactions are not quick enough, nor does she drive safely. I struggle with being the “bad” person daily for decisions that have to be made for safety reasons. I am so glad I found your blog because I feel it will help me keep grounded in doing what is necessary and help to keep me compassionate with how I deal with both big and small decisions on their care. Thank you!

    1. Hi there , I’m so pleased you found me . If I can help you in any way , I will. I started writing this blog to help me and maybe help others in the process . You certainly do have a lot to contend with , having both parents with differing problems . I really don’t know what I would do without my family and my daughter . Just know that you are doing a good job . Being there for them is all they need. But you must remember to take time for yourself . Sending you and your mum and dad all my best wishes 😊xx

  9. Shelley it seemsthat you have a lovely take on all aspects of life, despite a lot of bad luck. I was diagnosed 4 years ago. i live in Somerset just me n the cat, my daughter Eve is 29 lives in Wales but see her and her partner often, she is my best friend! Gave up work in 2013. Within support group have made new friends, do mild exercises and sea shanty singing! i have new confidence, got a quiz organised for last april. Sometimes its hard to be light hearted but if you can do it it inspires me.
    Like your blog it is a new idea for a technophobe like me.!! Kind regards x

    1. Thankyou for reading Kim, I’m so glad you introduced yourself. I think it’s so important to have a supportive family, I feel so lucky to have such a good husband and caring family. I’m definitely coping better since I started to share my feelings, it certainly helps me to get it all out there.. I’m here if you ever need a chat. Sending you my best 😊xx

  10. Hi I am Eva a Swede now living in Ireland. Wow, you certainly have been through a lot of the years. But you seem to have some sort of strength through all of this, I really feel for you and it must at times be quite frustrating. Thank you for sharing this post about your life, it is a good thing to share this with others and share your feelings about it. Sending lots of thoughts and hugs your way.

  11. You are an inspiration to others, you have had it rough and are still fighting on. Think this blog is a great idea to help and inspire others. I was diagnosed with Parkinson’s 10 years ago, at 38, and have recently had to finish work as I was struggling. I had worked in my job for 30 years and it’s has left quite a hole. I am trying to fill this have a couple of holidays booked going on 1st one in the morning 😎🌞

    1. Thankyou so much Debbie, for your lovely comment. I totally understand how you must feel about leaving your job. I hope you have a lovely time on your holiday. My poetry & photos and sharing with others on my blog has been like therapy for me. Wishing you all my best , take care xx

  12. Hi, my son drew my attention to your blog. My husband Dougie is 67 and was diagnosed with Parkinson’s 16 years ago but probably had it from middle 40s. He also has CMT diagnosed as a child. He is also in heart failure although well managed, for the past 8-10 years. He has had a pacemaker for 20 years and has 5 stents having had 2 heart attacks. He is a fantastic husband, father and granddad. Although sometimes in tremendous pain and rarely has a nights sleep, due to night terrors, he deals with life with great fortitude. Doctors and consultants often say he is complicated. They have never even hinted that any of his complaints may be connected. I don’t know what to think!

    1. Hi Linda, the first thing I’d like to say is Thankyou for sharing your husbands story. I have been told too, that I am complicated. On many occasions. I’ve been in contact with a few people who have both diseases. I’m sure there are many more out there. I find its hard for us who has both. As some of the symptoms are similar. So when asking the doctors, they seem not to know. I’m afraid I feel the same as you.

    1. You’re welcome, I wish you and your husband my very best. I totally understand how you and your husband must feel. My family and I are feeling it too. I think personally that the two conditions are related in some way. But I think there is too few of us to bother investigating. You take care too.xx

  13. Shelley, I have read your blog and have bookmarked it. Thank you for sharing your experience with us.

  14. Wow you helped me so much. My father suffered from cmt and we think Parkinson. For years dr told him it was arthritis. He had to match when he walked and had no individual use of his fingers. It started affecting his lungs and heart they said but he did not get the full diagnosis until he was in his 50s. And we had never heard of cmt and hearing bits and pieces my dad thought only boys got it. So I have two children my youngest a boy do my dad would check his muscles and feet. I figured I was in the clear since we thought women were only carriers. So in 2010 my body started having Kure issues. I too have had emotional issues and sometime physical. As a senior in high school I was told my back was bad and I’d never have kids. That’s funny. So I started having issues sleeping, and swallowing and from 2010-2012 I went to every kind of dr imaginable but yet nothing they told me it was all in my head. The shakes and emotional stuff got bad then in 2013 I was in a car accident which I had a very bad head injury and my left leg my acl was destroyed. So I got surgery for my knee in 2014 and I still can not bend it. It’s hard. I had weight loss surgery cuz in the end of 2014 we lost my dad. So I basically got so depressed between my knee n accident and my dad so I pretty much ate my feelings. I couldn’t sleep it had been many years for me. I’ve taken Tylenol pm for as long as I can remember. I got to the point where I wouldn’t sleep for days yet fell asleep during activities and I was so swollen my liver was dangerously enlarged and thus being 6 months after Losing my dad my mom was a wreck. So I started losing weight but still the insomnia got worse. Usually if I was lucky I’d sleep maybe 2 hours a night. My brain did not shut off. And the shaking. I’ve always had that I just thought that it was just how I was an since we thought the cmt was only in men it was never a thought in my head. Now then I start to think of the issues I’ve always had. I had endometriosis unrelated to this but that was a large contributor of my pain I believed. I always felt tired and hurting I couldn’t explain it. The constipation that I went thru ever test and three colonoscopies in bout 6 months but nothing. And then the swallowing. I couldn’t swallow I was hoarse when I spoke so then to the ent and the swollen glands and my right side of my thyroid enlarged I’ve had lymphodes removed, I’ve had more meds and blood work then u can imagine and yet never connected any of it. In my early 30s basically a nervous breakdown so I thought great. I’m crazy and maybe this is all in my head. So fast forward now my two kids are in college and finally found a job at a gastro office that was accomdating with my knee but the stress. So March of last year three months working I have a heart attack. So now there’s that. I haven’t felt right since then. The sleeping I e taken every type of script or otc drug for sleeping the teas the drinks aromatherapy NOTHING helps. I’m lucky if I get two to three hours a night. So between that and the stress from work and everyday life I started having Lil mini breaks. It was happening more and more until jan 13th this year. I was so upset and crying n so emotional I was exhausted. I went to work n it was a start to another stressful aggravating week and I left early to go with my son who needed supplies to go back to college after winter break. Here we are in staples. The last thing I remember was seeing him down the aisle and the next I’m waking up w people all around me telling me I fell and I said I’m fine I’m fine. They told me I had to go to the er which I tried to argue until my son with tears in his eyes looked at me and said mom you had a seizure. I said wait what. Again mom you had a seizure. So at this point he’s going home to get my mom and my boyfriend and my daughter and I was taken to the er. Scared out of my mind. Not really even knowing what was going On. What scared me was. When the emt asked for simple things like my name my dob I had no clue. It was so scary and confusing. I couldn’t remember anything. And then here I am admitted to the hospital so worried I’m gonna lose my job. So I have to go to see the neurologist since we know my dad had cmt and the seizure they said it’s a good idea esp with a head injury almost five years ago. Then I go w my mom to the appt. he explains the seizure and says let me examine you. Which I’m like I’m fine really. I just shake a lil esp when I’m upset or nervous. Well he took my arm as resting my hands just shake and he begins to check me and says you have early onset of Parkinson’s. I said no way. He said yes. So I said about my dad with cmt which we never knew if he also had pe. So now I’m put on meds and gotta see a shrink etc all I think is this is a joke right. I’m watching a lifetime movie. But no. I start to read up on pe and I start to realize just how many symptoms I’ve had but never noticed. I always had an excuse as to what was going on. So here I am a couple weeks in and it starts to hit me. I have had a lot of like nervous kinda tics when I’m driving and sitting or doing something. I never noticed it before cuz I would just be like. Yay I’m nuts lol. Now I feel sick from the meds. My family won’t let me get out of their eye view afraid I’m gonna have another seizure. Me personally I’m afraid to drive since my hands are affected the worse. I have had issues doing my eye make up for a few years now and I just thought like every other person who does office work. Eh carpal tunnel. But then it’s I’m so clumsy. And not just regular clumsy. I can’t keep hold of things or pick certain things up. I get obsessive over certain things and just the way I do things. It has made me stop and take a look at myself. I have already been dealing with a handicap because of my knee but I figured a surgery to remove the scar tissue or pt would work but it hasn’t. Then it hits me that I have a disease possibly two that I could’ve passed to my children. That I will have to adjust to a lot of things. By the way it’s too much talking not to mention the forgetfulness of things that I did for years s no issue. I always just thought it was from the head injury. But nope. I still don’t even believe it’s happening. I keep thinking I’ll wakeup it’s a bad dream but it’s not. It’s something I have to accept and learn to handle and live with. I watched my dad do it so I know I can. It’s just I’m a bit weaker than he was. I now understand when everyone would complain they didn’t feel good etc or they were in pain he would always say heh you should feel mine. Or he would always ask for new feet and hands. He was in a lot of pain but still worked. We believe he knew he was more sick then what he lead us to believe. In the end it started to affect his breathing and all and for six months I watched my strong dad would I believed was like Superman turn Into a weak frail and embarrassed person. He never wanted anyone to see his weak of his much pain he was in but somehow I always knew. And I’m a lot younger than he was and my kids are both in college my girl is 22 and my son will be 20. I want to be around to enjoy that. It’s hard now cuz they all kinda look at me like I’m fragile or broken and that’s when I realized that’s why my dad never let on what he was going thru. It’s the pity. The pity of people who have no clue. Or that worry thinking oh my gosh no don’t do that I hate to be looked at that way. I was s single mom. My ex hubby was another aggravation but I managed to raise two amazing kids. I always looked at myself as strong. I lived thru many things that most people never have to. I always felt like a survivor. But now for the first time I’m scared and I feel weak and I hate it. Most days it feels like I’m watching myself from the outside like a movie.

    1. Hi Michele, I’m so glad my blog has helped you. It sounds like you’ve had a really rough time. I’m sorry you lost your dad. It’s hard when you feel something is wrong and you don’t quite know what’s happening to your body. I can totally understand how you must have been feeling. Maybe it would help you to write down your feelings and start your own blog. It’s certainly helped me to get my feelings out. I’ve also found friends from all over the world that are going through the same as me. I think it’s good to know we are not alone in this journey.
      If you click on the three lines at the top of my page you will see some of my poems that have helped me through.
      Try to stay strong, I know it’s hard, sending you my very best wishes,
      Always here.
      Shelley x

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