Anyone with Central Pontine Myelinolysis

HI my friend  I truly know how you fell, I went through the same thing in 2015. I still suffer but nothing like your going through right now. You do get a little better but it's a long road. I also was told by a lawyer that the hospital covered it up to well by there sodium level stats. I still think about sueing to this day because I know they did this to me. Unfortunately I'm poor so I gave up. If you need anything or just want someone to talk to about what your going through please reply to me because I've been there and there is not many of us. Take care, gary

Hey Gàry, and àll heRe...my hands shake real bad,,ihavve dr appt tomorrow,,anythiing i should ask for!??

HI Nathan, nice to hear from you, in may case I was in nursing homes for about 7 months. Looking back on it physical therapy was the biggest help for me . It was months before I could use silverware because food would just go flying everywhere and hardly ever ended up in my mouth. The shaking in my case got better slowly. It took me about a year until it was under control that was me and we are all different. It's like Parkinson in reverse. For me doctors did very little. With the exception of causing it. This might sound stupid but yoga was very important very slow movements consistantly. I don't know what meds your taking. They gave me many different ones. They didn't know. I have been on this site for 2 years and your only the 3rd person I have heard from. We are lucky to be alive. Stay strong and positive because it dose get better. Take care,Gary

I don't know where you live but.medical marijuana has been and still is a huge help for me. I also have ptsd and because Of that I stopped oxy and anti deppestants, something you might want to research, take care, Gary

Hi Gary,

Firstly, thank you for being on here and having a conversation, i hope that we can start one?

My name is Caroline. My son was diagnosed with CPM 6weeks ago. We are very early in the process. My son is 37 and in the UK. He isn't on any medication and we are working toward him being taken of a ward in the hospital to go into rehab in Oxford. 

Gary, may i ask how long ago this happened to you? and the best 'treatments' you have found? I am interested in Medial Mary Jane (i live in Canada and will explore) just wondering about the impact it has had with you. I suppose i'm asking for your story, but if it's too personal i totally understand and any small amounts of advice you could offer i would be most grateful for. And from anyone else out there who may be reading this.

Bless you all

Caroline

Nathan,

Gary is right, slow repetitive movements really help. Like Gary, the first year  for  me was the worst for my hands. I couldn't do anything. Feeding, zippers, buttons were all impossible. Its been 6 years since getting CPM and at year four I started taking Propranolol, a beta blocker often given to people with ataxia. It does help but the tremor is still there. Like Gary, I do Yoga, Tai Chi, and exercise daily at the gym. Another thing that has really helped are planks. When I was in physical Therapy I was told they wouldn't discharge em until I could do a plank for one minute.

Things will get better for you Nathan.  

Joe

Wow! I've never had so many responses to CPM. Caroline I am so sorry about your son. He's at the beginning of a long road. I would be happy to tell my story and help you as much as possible. Please keep in mind that I'm a survivor and what I write is my personal experience and all experiences vary. It happened to me dec.2015 I was 51 at the time it happened. I was a business man married with a daughter (15),and the next thing I know I am fighting to live. Beware of most medications they seemed to make things worse. Its almost like your minds erased and you have to learn everything all over again. Medical mj worked for me but it is not for everyone. SOunds silly but yoga and tia chi are of the most importance. For you you must be patient with him he's going through hell. You and your son have my best, will talk again soon, Gary

Thank you Gary,

My thoughts are along what you say has helped you. I do physio with him every day, stretching his muscles and moving his joints. A long way off him doing this for himself.... 

I had never even heard of this condition until 6weeks ago. Your 2.5yrs in... a new life. I am so sorry that you are experiencing this awful condition. Are you back at home or in rehabilitation? Our next step is for my son to go in =to neurorehabilitation, but that will only last for 6month. The slow stretching  movements i hope will help when he gets there. No drugs are administered. I think right now, the speech is the most important thing to get back, we have stayed with him 24/7 until this week when the hospital said we must stay within the visiting hours... 8-8. it's terrifying for him. I really would love any input you can offer. This seems to be a rear thing and i'm not sure who to speak to - i would love to offer my son something... i have told him that i am now on this chat room and i think even that has helped a tiny bit.

Thank you so much for responding 

Caroline

Actually, I'm lucky! My dad had Guillain Barre Syndrome in the 70s when I was a toddler and had to learn everything over again as well. He made a 100% recovery. When I was laying there not able to move I asked how he did it. He said two things, "never stop moving", I took that as whatever You can move - move it, and "I'm proud of you". He may have said it before but that was the first time I heard it.

My two sense on the tremor, remember the nerves are learning again so don't suppress them to much.  It's annoying but do lots of hand  coordination exercises. It will start to work!

Nathan, if you have an iPad get this app: Drak Night Kung Fu Fruit

It's a game of cutting fruit by sliding your finger on the screen. I was showed this in occupational therapy. Just remember to take breaks when you get frustrated and go back to it at later time.

HI Caroline, I will be here for you everyday if you want. If he is anything like I was he hears everything but doesn't really understand what's going on. It was about a year before I could understand things. When I could I remembered almost everything from family members arguing of me in the hospital room to having my last rites read to me. My family was told I would not make it. He is going to want to talk badly but will be unable for awhile. You should try to get a larger iPad set to enlarged letters so he can try and type will be very hard with the amount of shaking but is worth a try. I have been home for about 1.5 years. My wife and daughter have gave me full time care which I couldnt have never done without them. Everyday is still a struggle and probably will be for the rest of my life. But once again someday he will remember what's happening now! The emotional ups and downs are horrific to this day. One minute I will be ok and the next I will be crying and I just can't help it. This might be selfish of me but these discussion are more for me then you could imagine and if I can someone a long the way I very happy. I don't think anyone has heard of Cpm unless there are affected by it. I have not heard of any doctors that know about people surviving it. Emergency doctors know about it but in death they don't know about the few that survive. Anyways I'm here for you and your son at least to the best of my ability, stay strong and positive, Gary

Good morning Gary,

Thank you thank you thank you for sharing yourself and your experience. Already you have given me so much hope that my son will be out of hospital and able to speak and move again. I do have hope, but talking with you and seeing what Joe has to say is so very emotional and helpful.

Richard understands everything that is happening around him. He remembers who has been to see him and is totally aware of his surroundings. We have made up boards, Alphabet, parts of the body, emotions, types of pain. When you think back, can you or Joe suggest anything that you would have wanted and would have helped - something that only you guys could know about?

He has his sister who is with him every step of the way, his father, he has children an ex-partner (mother of children)  and new partner. All who love him and will support in anyway they can. And obviously me, Mum, my concern is that i don't live in England but on the West coast of Canada. I have been here since he was found in a coma - but i will need to go back home at some point and then work it out from there. So anything i can do right now to get the right support around Richard is my main task. His next step is going into the neurological rehabilitation centre in Oxford, hopefully within the next month. Would making his room more homey with family photos etc be helpful? I don't know if this would cause more upset?

Gary may i ask, did you lose your swallow and voice? and if so how long did it take to get that function back? I know everyone is going to be different, but it would be good to hear about  improvements. As said Richard is moving his thumb with ease now, that took about 3 days but it seems the new neurological pathway is working well. We (he and I) are focusing on fingers, hands, toes. I think it must be exhausting for him, can you remember how it was for you? Would you share that with me?

This is so different for everyone, as much as we do, i am a little scared of doing the wrong thing! As you say, not many docs know about this - in fact i think we know more than the docs now! In the meantime i will continue to work with Richard, stretching, moving joints and then asking him to focus on fingers etc. Did you do that?

Sorry guys, so many questions !

Blessings and thank you again

Caroline

HI Joe,

My name is Caroline, i have been reading your text and maybe you have seen mine? I just wanted to introduce myself and say hi and thank you for your comments on what is helping you.

6yrs... The fact that you are doing Yoga and Tai Chi is wonderful. My son is 6weeks in... a long way to go. I have been in communication with Gary for the past 2days - can you see those posts?

If not i will explain , but if you can i won't go over it all again. I hope that we can communicate too?

Warm wishes Joe,

Caroline

Hi Caroline, I  am sorry to read about  your son Richard, but can I firstly say it sounds  to me who  was diagnosed with  CP, in 2014,that you and  the  rest of Richards  family  are doing  a great job. I myself  spent 6 months  in hospital, and  for me whilst I had locked in  syndrome,  unable to  speak  really wished for those who cared for me to look at me  whilst talking because I  was physically  in the room and  not talking over  me, which a lot of Dr's  and  nurses tended to  do. Secondly move my limbs, it was agonising  lying  still for months on end.  I do believe that  the  quicker any physio  is started the better.

Of course, as you've  mentioned  everyone  with CPM will feel and be treated different .  As for  being able to swallow , took about 5 months.  Once I began to  swallow  sips of  coffee /juice,  things finally  began to improve.  (JUST A NOTE , YOU MAY ALREADY  KNOW.  BUT NEVER  GIVE RICHARD  WATER?AS IT GOES DOWN  TOO FAST, AND  CAN BE VERY VERY DANGEROUS ).  It's sometimes  difficult to  know what you the family are doing when  Dr's  don't seem to  know a lot. But go with your instincts, I'll pray for your son and  all the family. I'll pray that he has a  speedy recovery.  It's a good sign that Richard, can move any limb at all, he's there  and will be  SO glad  that you  are all there for him. There's a long road ahead, and  it's not always  easy to know  what to do.  Take care of yourself  Caroline x

Alison 

Alison, thank you so very much! This is so kind of you to get back to me. You have given me much hope and i will pass your message on to Richard when he wakes up. How are you now? 

I take note of everything you have mentioned. I make sure the nurses, docs and therapists speak directly to Richard, have done this right form the beginning. I also note what you say about water. He can't swallow and i know a person has been giving him a little water on many occasion, this has lead to him having water in chest and a week of coughing..... I am doing about 1-2hrs of physio every morning, we have just finished a 1.5hr session. 

I can't tell you how much i appreciate your words and please if you think of anything else that we should be aware of please, if you can, let me know. This is such an obscure condition and as you found out, not many professionals know much about it.

Blessing to you Alison,

Caroline 

Hi Caroline, you guys are doing wonderful. Everything Alison told was right. I could not have food or water for months. With me they had a hole in my stomach that I was feed through. Just like everything else it's a slow progress to swallow and speak. On a positive note he survived the worse. Now it's all about getting better and with the support it sounds like he has I am confident he will be fine. They had me on so much moriphine I thought Micky and Minnie Mouse were trying to sneak me food and water,ha! I think Richard will be fine in time. Have a great day A, Gary

Thanks for your  kind words  Caroline, bless you. I was diagnosed with  CPM, in 2014. I was comatose  for 6 weeks, then had locked in  syndrome, for 6 months,unable to  move,only my eyes,not able to  swallow, even  my own saliva,  I was fed through my stomach. Now almost  4 years on,its been a very long hard road. I spent a year in a rehab  unit learning to walk again,feed myself, and  see to my own toilet  needs.  One thing I am sure of is that I always wanted to  live  and  get as well as possible.  It was after about 2 years, that I began to be able to walk 20/30 meters with the  aid of a  walking stick. This alone is miraculous, considering  everything. I  know I wasn't expected to  live let alone  walk again, & yes, everyday  things are difficult. I  get very tired  quickly,I shake a lot and  lose my balance  i need quite a  bit of  help from my family, whom without I think I wouldn't be where I am now,although I'm not back to 100% ,I'm still here. I know that when I lay in bed with that condition, I can only describe as feeling  entombed   whilst still alive, but I don't want to give you any more horrors about this,you already  know the reality, as I  said earlier,  mostly whilst I lay there i wanted all of the staff to look at me whilst talking (some  nurses talked over  me whilst changing  my bed sheets etc),but I truly hope  that I can  give you and your family HOPE.   Truly, amazing  things happen, and with the love of his familyhis recovery has already began.   Moving  his limbs is great whether  it's by yourselves  or physio, I really used to look forward to that as I knew the more movement the stronger  my muscles  would become.  Of course, you  carnt go mad doing hour upon hour. Sometimes I  would  cry I'd get so  tired. Sometimes, I  just cried. 

I carnt  of course say how long Richards  road is going to be , but it will be long and  hard,yours  too.  You'll  have to be patient.  God bless Caroline, your all in my thoughts and prayers x 

Let us all know how things are going! 

I'm here

Hi Alison, everything I read from you is almost exactly like my experience. Let me ask you do you have problems with attention span cause I do I can't do anything for more than a few minutes at a time. It drives me crazy😖, Gary

Hello Gary,   to answer your question. 

Yes I do have a short attention  span  & find being able to concentrate  for more than a  few minutes  difficult, also find it hard to remember  things

People can tell me  something.  If it's  mentioned  again, I'll ask why no-one  told me. To be honest,I find a few people think I'm pretending that I  don't recall  being  told. But it is as frustrating  for  me as them having to  keep telling me things over and over again. 

Whilst having  conversations, half way through  I'll forget  what we are talking about, some  friends  are very  pacient. 

I sometimes  get  on my own nerves, but there we go.

Caroline,

We can all see your comments unless you send a private message to a person. I'm sure you know that we're all rooting for your son.

One thing that really helped me when I couldn't move or speak was the eye blink response. One blink for yes and two for no.

Also, friends and family massaged my feet and hands with a wash cloth and lotion. It helps the nerves come back quicker.

Let us know if you have any questions that we can help with.

All my best,

Joe

Oh my god! That's how I am. I thought I was alone on that. My family is very understanding but it's so sooo frustrating for me. My long term memory is good almost weirdly I remember this from my past like it happened yesterday but short term is horrible. Thank you getting back to me. I really need to speak to people that understand what I have been through and continue to go through. Take care, Gary 

Hey Joe,

Thank yo so much for replying. We have yes/no responses with eye movement as you have suggested. We massage hands and feet everyday, with oil as Richards skin is becoming very dry in those areas, then physio and stretching. Looks like the natural feelings are correct - such a relief to know. I so appreciate all input from you and anyone that is going through this challenging (sounds weak!) condition. 

Again, thank you so much - there doesn't seem to be many of us and if i can support in anyway whatsoever please let me know.

This site has been like a life line to me. I have started to read some of your responses to Richard, but of course he is so early in the process it's difficult for him to think in terms of months let alone years.

Thank you so much,

Blessing and warm wishes to all

Caroline 

Gàry,, apppt went ok, mainly got rid a few and gave blood. start the med 4 atax monday. i woulldd write morr' but too shaky tonight .

HI Nathan, I never heard of atax. Hopefully that will help you.. You should try doodling it doesn't come out pretty but it dose help. You should see some of my art work. Its pretty funny to look at now. Take care,, Gary

Good Morning,

Thank you so much , everyone, for writing here. Richard also now has a stomach peg for feeling and fluid. Better than the nose tube! 

Thank you for letting us know that he has survived the worse! That in it's self  is such a relief to know.

Just focusing on moving forward is good - looking back and it feels like looking at a war.

I did want to share with you all that as i mentioned Richard has relearned to move his thumb on left hand - yesterday, i actually got a squeeze of my hand with his left! A week ago i was sure he was making tiny movement, then i heard that his partner said over the weekend that he had to fight this and he actually made a fist! Well yesterday was a very good day to see the movement and to feel the squeeze.

And Gary, I have had to make sure that they keep off the drugs - i know that they were being administered because the nurses didn't know what else to do! He's just on vitamins and paracetamol.

Have a fab day, and thank you again

Good morning  Caroline, it's heartwarming  to hear that  Richard, can  now  make a fist and  squeeze  your  hand. It may seem incredibly  slow at times,as in my case when I began to be able to  move my toes a little bit  it was exchausting for me. Also when I first began to be able to  say the odd word,it was usually one word and then I'd be wiped out for the  rest of the day.

You must feel SO happy and proud of  your son, who clearly  has a strong  will to get better.  As a few of us have said,  and I'm sure you are aware, there's a long road ahead, but this sign is a light at the  end of  a very  long,dark tunnel.  Please pass my best wishes, on to all the family, especially  Richard. Tell him "well done mate".

Your  whole  family are in my thoughts and prayers.

(What part of the  world, is Richard  being  cared for)?

Alison x 

Joe

HI , so glad to hear that. Really glad to read in your writing some relief on your part. Can't imagine what your going through because I was on your sons end of this trying time. If the conversation from us helps both of you I could not be happier.  Take care, Gary

Hi Alison,

We are in the UK, in Stoke Mandeville Hospital right now - hope to get to Oxford within the month for some more appropriate rehabilitation.

Alison, i today finds you well and managing to do the things you want to.

Warmest wishes, and thank yo again

Caroline

Yay! Thank you Joe, it's so exciting and welcomed! 

Thank you so much for your support.

I hope you are well today?

Take care

Caroline 

The conversation from you is a lifeline, thank you so very much. It has helped beyond words to hear your experiences, to understand a little of what it is like for you all with this condition. Every step is so gratefully received!

Blessings

Caroline

How is Richard doing? We are all thinking of him.

Joe

Joe, hi! 

I have also been thinking of you all . How are you?

Richard has been doing well. His left hand  is getting stronger. he can lift his wrist, pinch with index and thumb and the next 2 fingers he can straighten. The arm is getting really strong, in fact he was cross the other day and i said ok, let's have an arm wrestle and get it out - he was very strong! 

Today we have had a disappointment in that we were expecting for the people from The Oxford Centre of Enablement to come and assess him..... they didn't show. This is the rehabilitation centre - so it's just going to take him longer to get off the ward.

This week, and i'm sure you will all understand, has been difficult mentally and emotionally. Although he is totally cognitively aware of everything, he has started to ask when he will be discharged. How long before he can have a drink, How long before he can eat. These are his main concerns and of course they can't be answered to any satisfaction. It has driven him crazy this week when i haven't been able to understand. I have made boards but when Richard is frustrated he's unable to work with them.

Any advice you chaps have about handling this, or what you would have appreciated would be more that welcome. May i ask how long each of you were in hospital and then rehabilitation? How long it took for you to swallow and speak?  Are you able to live alone? 

Thank you so much for getting in touch, i appreciate this very very much,

Sending love to you all

Caroline x

Stay strong..

My dad had CPM n now about 7 months he is able to walk by himself without walking aid.

Daily physiotherapy. Hand a bit shaking. But only stamina does not recover yet. Easily tired and need to rest.

We r doing our best to help him rebuild all the movement needed.

Thank you so much for connecting and i would love to hear news of your father and his further  overcome challenges!

Best wishes to you and your family,

Caroline.

I was in the shower hospital for 2 1/2 months. Then I went to rehabilitation for another 3 months inpatient. From there I went home and have done several terms of outpatient therapy.  I had my first swallow test at the hospital then again passed it at rehab. I REALLY wanted an ice cream fruit smoothie! It’s amazing what you crave. 

Keep up the great effort! Look for the positive. Every thing is a mile stone. I just kept saying to myself, “Huh, I couldn’t do that yesterday!”

You guys are in my thoughts frequently. 

Joe

Guess my country medical understanding for CPM is really nothing. My dad did not went through any swallow test.. but we was told by a Chinese medicine doctor to train him with small tea spoon of water daily. This helps him to gain back the ability about 2 months on feeding tube.

Caroline another advise it to move all this arms and legs... To me it helps to prevent stiffness n also stimulate signal back to the brain. A little mistake we have done which we r too focus on his legs but his right arm develop dystonia... Every night we took turns to massage his arm.. now it shows less shaking or jerking..

Good morning Cleong,

Thank you ! So very much appreciating everything everyone has to say. We were giving Richard tiny amounts of water - only to told they would get security to 'escort' us off the ward if we did that again. The reason being is that they don't know where the water is going, it may be going into in lungs which would clearly be a great danger. So we wait.... 

Thank you also for the confirmation about movement. I am stretching all 3 limbs for about 1.5 - 2hrs every morning. Each knuckle also. My daughter massages him in the evenings. Interestingly, Richards right arm is also much stiffer - more so in the last week. So I am now giving it more love and attention. The rest of his body seems to be quite well and now that this has been in place for several weeks, he is no long in pain.

I think this is such a rear condition that we face the same problem in that the doctors don't really know much about it. I know that i actually know more than the medical doctors on the ward now - i hope that will change when Richard eventually gets to rehabilitation..... Talking of which, can you share what were the best exercises for your father to have the ability to walk after 7 months! This seems absolutely amazing to me from where we are.

Have a good day 

Caroline x

Oh Joe! So does Richard.... ice cream and ice lollies lol ! I can only imagine.

Shower hospital? I don't understand this term. Rehab only 3 months... wow.. ok, in my mind 6months seems a short time. Were you able to take care of yourself after 3 months? What were the most useful exercises for you?

Sorry so many questions...

I totally agree with the positive outlook. I walk in with a big smile everyday and told Richard i can only do that because everyday there is something ' a little more' than the day before. I love that your self talk was so positive! I hope it still is. 

May i ask, when were you able to begin speech again? was there a moment? is there anything (exercise) i can help with Richard? The tiniest snippet of knowledge is most welcome.

Dear Joe, have a really good day and thank you so much for sharing with us all,

Caroline x

My dad is 75yrs old. He is an very active person before the injury.

We give him daily physiotherapy and massage to stimulate his brain.

Actually the physiotherapist is the guy who plan his routine to let him learn to walk. He has been bedridden during November and December. Started walking without any help on January 2018.

Shortly after the vent was removed and the hole healed a little I was going given a speaking valve that is to be used to help with speaking until the hole completely healed. Some exercises I think would be tongue exercises and mouthing the words. Ask for a speech therapy visit from the hospital to give some exercises. Here is one I did to help with swallowing:

Masako Maneuver.

Look on YouTube for example. Tell Richard to caught if he feels the need during the swallowing test. My therapist told me i didn’t pass the first time because I didn’t caugh. I thought they would fail me if I did. 

Joe

Joe

I can totally understand this. It must have such a challenging time for you, my heart is with you. How are you now? And sorry i can't quite remember the timeline of your recovery.

Caroline x

How's everyone doing?

Good Morning Gary,

I think of you all each day and am so thankful for each of you and the sharing you have given. I know the challenges haven't gone away, they simply change and i truly wish you all well and hope that each day can become a little easier than the day before.

Thank you again Gary,

Warmest wishes to you all

Caroline x

Seems Richard is recovering good.

Keep monitor everything.. Especially later will he develop tremor. this happen to my dad as his nerve misfire. Doctor prescribe him anti Parkinson med. Side effect cause him unable to sleep n drinks high volume of water.

Gary helps me a lot during that period. Now I also share my knowledge to help others ..

Here I wish to say thanks everyone in this forum again...

Hi, great to hear, be careful with the meds. I felt like they were just trying drugs out on me. That's one of my biggest battles now. I think most of the meds given to me did more damage then good. One thing I learned from Cleong that I wish was done when I was in rehab is a daily routine of,omega3,pure turmeric and super b complex I fell that has done the most good. The shaking is tough but it's another step to recovery. I'm really happy to here from both of you. Take care, Gary

Good Morning Gary,

Wow, thank you for that advice. Richard doesn't take any meds at the moment. He is having daily vitamins  and paracetamol. ... As said i work with his body every morning, there is a shake here and there - not as much as there used to. I told Richard that if the shaking began again it would be a part of his healing - so thank you so much for that information. Everything you guys share is helping so much. 

It's Richards birthday today!  

Thank you so much !  Take care and warmest wishes

Caroline x

May he has a speedy recovery ahead..

Remember Caroline u have to take good care of yourself .

HAPPY BIRTHDAY RICHARD! I know how hard being in the hospital for your birthday. I spent my 40th there and Christmas. YUK! Luckily, the community band, Houston Pride Band, I used to play tuba in came and played Christmas Carols to cheer me up. It was a treat.

Caroline, i think you said Richard's feet are moving? The physical therapist was helping me to move my feet against the bed sheet bending my knees and bringing my feet towards my butt. Soon, I could do this on my own and it helped with muscle strengthening.

My wish for you on your birthday is a speedy recovery!!!

HI Nathan, how you doing, haven't heard from you. I know your in that weird place just out of rehab. Hope everything is alright? Gary

Good Morning Joe,

Richard has been accepted into the Oxford Centre of Enablement... now we wait for a date. This is where his 'proper' rehab can begin to take place - all he has had to date is me doing a lot of bending and stretching and his sister massaging.

Take care everyone and wishing each of you a good day

Caroline xx

HI my friend, nice to hear from you. Your typing seems much better. I'm sorry but the nasal drainage when eating isn't a problem I had. Remember take it a pace your comfortable with. Improvements will happen. Stay as positive as possible. Take care, Gary

Have u read any article on Vitamin E for nerve regeneration other then vitamin B12?

Seems promising.

Cleong, thank you for that information, i will most certainly be reading up on this research. How are you? How's your father?

Gary, how you friend? 

Update on Richard. yesterday he was taken from hospital to the Oxford Centre for Enablement - Yay! They will give him 3 months rehab - if he is going along well after the initial 90 days  they may give him another 3 months. All in all, very positive and Richard remains in a very good state of mind although the not speaking is driving him a little crazy as you all know. 

I would love to hear how you doing and please know that my thoughts are with you.

Take care and very warm wishes

Caroline xx

Just want to say how good it is to see your communication! I am so impressed that even if very hard for you to type, that you do it! Please, when you can, let us know how you are.

Warm wishes

Caroline x

Hi Caroline

My dad progress has slow down..

But the hand tremors has reduce.

Now looking at some other supplement to help him like Vitamin E.

And I have planted many plants around his room which will also release oxygen at night. Such as Alovera and also "snake plant"..

Increase his oxygen level around..

Caroline x

Hi Caroline, if you put down a word they don't like. They have to read it before it goes through. Mine will go through. But not for a few hours. Gary