My only child - son age 45 had a pontine stroke on May 6 this year. He was diagnosed with Type 1 diabetes at age 13. In his 20’s 30’s and 40’s he never went to a doctor. He managed his diabetes on his own. He was diagnosed with high blood pressure in his 20’s but never followed through with medication for that either. He was was very athletic and a very hard physical worker. He was 6’4 and weighed about 195.
At first they were treating him for a diabetic coma but he did not respond for 15 days and only then did the doctors find the pontine stroke. He has complete renal failure, his left arm doesn’t work and he has no feeling below his waist. He has a tracheotomy and a feeding tube and gets dialysis 3 times a week. His brain is very sharp he was a very good student with a degree in communications.
His primary care provider is his girlfriend of 8 yrs. She is an attorney with the District Attorney’s office. My husband (stepfather) and I visit my son very very frequently we live 2 hours away.
His (gf) is dealing with all his doctors, medical care and insurance and has a full time job. She has been an absolute godsend. I am 72 and my husband is 75.
My son has had 3 setbacks dealing with infections and was scheduled to go to a very good rehabilitation facility yesterday but he has another infection.
All his friends visit him very frequently despite having families and full time jobs.
At this point in my life I never thought for a second my son wouldn’t be able to be there for me. Neither my husband nor I have any close family for support.
I am at a total loss.
Have tried for the past 4 months to find a therapist but they have so many excuses not to help - too old, not the primary care provider, wrong insurance etc.
I am very religious and have given everything to God. I pray and cry so hard - please please God give my son the strength to heal.
Hi @At_a_loss welcome to the community. So so sorry to hear of your son’s stroke. I can only imagine how you must be feeling. Sending lots of positive thoughts to you and your family and really hope the current infection clears quickly so your soon can move on to the rehab facility he needs.
As you have found out stroke doesn’t discriminate with age or fitness levels. Now that they have discovered the stroke he should be getting the treatment he needs and hopefully this will help him start the recovery process.
Stroke recovery can take a long time but usually if yoh work hard at it improvements can be made. His age will help a bit but ut does sound like there is a long road ahead for you all.
It is very important that you all look after yourself at this time too as you will need plenty of strength to help him through tge next few weeks / months.
If you have any specific questions please ask away. There is usually someone that can offer some advice.
Sending my best wishes
Ann
Welcome. I’m guessing you’re in the States. You should be aware that most of the medical information on here is specific to the UK.
4 months is very early in terms of stroke recovery, we usually describe recovery as a marathon not a sprint. It involves a lot of hard work, you cannot wish yourself better. If your son tries to force the pace he is likely to fall victim to the dreaded post-stroke fatigue.
As Ann said please look after yourself. Your son will need a support network in the future. Hopefully he will soon be in a rehab facility which will give him the treatment he needs.
Hello At-a-loss. I am so sorry to hear of your son’s stroke. I am not a medical person, just a fellow stroke survivor. All of us on this site are here to support you as best as we can. In your message may I gather that you don’t live in UK? No matter what our language is, the effect of a stroke, as you say, is devastating. It’s very hard in these first few days to make sense of what is happening and no doubt your faith has been a comfort. However, the practical things need to be done. May we know if your faith community is alongside you? Not knowing what medical facilities are available to you is a deep worry.
Forgive me if I am suggesting things that are not available to you. Is there a dedicated stroke service in your son’s area? It seems that his lady is on top of these matters. What about the hospital resources? Is there a social service in the hospital so you could talk to a social worker?
I echo Mrs5K in that you and your husband also need support to face what ever comes. We can listen, support and offer any advice and we hope that will sustain you.
Please do let us walk alongside you, we have, all of us, been in the depths of despair but with courage and friendship we have survived.
I offer you my very best wishes Norma
Hi @At_a_loss I am so sorry to hear of your son’s stroke and the other health issues he is currently experiencing. Welcome to our community, I hope you will find this a useful place to be and a supportive community.
As a mother myself, I can’t begin to imagine how you and your husband must be feeling. Unfortunately stroke does not discriminate with age and fitness and many of the contributors on here (including myself) were fit and healthy before their stroke hit.
Sadly stroke affects not only the stroke survivor but everyone around you and you will need patience and strength to help him navigate the long road ahead.
Hopefully they can clear up the recent infection and your son can be moved to the rehabilitation facility where they can assess him to find out how they can help him and begin his journey of recovery.
Take good care of each other and with your love and support he will begin the long and difficult journey to recovery.
Please remember you are not alone and there is always someone here to offer information and advice.
Sending positive thoughts and best wishes to you and your husband and your son’s girlfriend.
Regards Sue
Hello @At_a_loss - welcome to the community.
Clearly you are going through a difficult time and have a lot to think about. I note your post on this forum has a very good response and hopefully this will give you some comfort and strength to build on.
You, your husband and your son’s girlfriend are doing an amazing job and I am sure your son will be getting much comfort and strength from this along with the support he his getting from his friends.
I believe that the love of family and friends and your faith in God will pull you and your son through these difficult times. Please continue to do what you are doing and do not lose faith.
Your son is clearly strong willed and a focused individual. To go through life and not see a doctor and manage conditions such as diabetes and high blood pressure on his own is quite remarkable. This character and mindset is what has kept him going after such a devastating stroke.
I will join you in prayers for your son and wish you all the very best.
Namaste|
Peace & Love
Hi @At_a_loss,
Thank you so much for sharing your son’s story, I can’t imagine how difficult and overwhelming the last few months must have been for you and your family. It’s completely understandable that you’re feeling devastated right now. You’ve been carrying so much emotionally, practically, and as an advocate for your son, and it’s clear how deeply you care for him.
I’m so sorry to hear about the challenges he is facing, a stroke is life-changing on its own, let alone when paired with other medical issues. It’s encouraging to hear he’s surrounded by a partner and family who are doing all they can to support him, and that he’s managed to complete rehab and return home, that’s a major step, even if things still feel incredibly uncertain.
Stroke recovery can take time, and for many people, it’s not a straight line. It’s okay to feel scared and unsure. You’re doing everything you can, and I hope his care team will continue to advocate for what he needs, whether that’s more rehabilitation, further investigation, or specialist support.
If you ever feel like talking things through with someone directly, our Stroke Support Helpline is here to listen and support you emotionally. They’re also an information centre and may be able to help find additional resources.
- Phone: 0303 3033 100
- Email: helpline@stroke.org.uk
@At_a_loss
I feel your pain 
There ar eno words which I can say that will make you feel better. But the support your son is receiving from family and friends will help in recovery tremendously. Don’t look back and think if only he had gone to the doctor regrading his diabetes and looked after himself properly, because what is gone is gone. Going forward I wish your son Good luck and he will never understand how fortune he is to have you as his mother. God bless you 
You are correct I am not in the UK. I didn’t know that was the source of this site. Unfortunately the stroke groups I have researched are for the surviving stoke patients and their caregivers so that doesn’t include me and my husband. Since his gf is coordinating all of my son’s medical care I do not want to burden her with any additional concerns namely my well being. The tough part is the complications from diabetes (infections) that keep my son from healing to get to rehab. Today is day 110 and his speech is improving every day but his swallowing is not. He does have a physical therapist that comes in for his arm and legs but only for about 10 minutes a day as this current facility is geared toward his medical needs. Last Thursday August 21 was my 72 birthday so I didn’t go to the hospital that day or mention anything to my son but his gf put my son on speaker phone and he wished me happy birthday. Every single mom knows how unbelievably happy the sound of their child’s voice is - and especially for me with the struggles my son is experiencing. Yes my faith is sustaining me and I know God has a plan - my prayers are that I will be able to accept His plan for my child. May God bless you and your family and you are in my heart and prayers.
Hello @At_a_loss I am so moved to see your post , wishing your son better life and lot of strength, I am also a great believer and believe that God helps. Stroke recovery can take a long long process but usually if you work hard at it improvements can be made. He is younger and age is on his side so let us manifest positive thoughts.
Now coming to your well being , How are you and how is your son doing now? At the age of 72 this much of grief can put a lot of burden , Please talk to care support group and be more active here as journaling is a proven technique to handle trauma. Personally i could choose anti depressants for few months after my young husband had this life altering brain stroke. But as I was in touch of doctors and my age permits me to take some drugs, Please try seeing what works best for you.
May God be with you all,
Regards,
-Neha